tag:blogger.com,1999:blog-84666913378340511762024-03-13T07:40:47.864-04:00I'M SOMEWHERE ELSEAmanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.comBlogger677125tag:blogger.com,1999:blog-8466691337834051176.post-52062440142502372152023-12-14T22:31:00.003-05:002023-12-14T22:46:19.498-05:00Revisiting "The School"<p>For various reasons, I've found myself thinking about ABA. For the past decade I've tried to avoid the subject, but I think any ABA-critical person gets sucked into arguments about it sometimes.</p><p>What particularly strikes me is that when ABA proponents defend ABA, they're always moving the goalposts so that abusive and harmful ABA practices don't "count."</p><p>"That doesn't happen anymore."-->"Okay, maybe it happened recently, but not that much."-->"Okay, maybe it happens a lot, but not at <i>good</i> centers." "Maybe it happens a lot, and it's called ABA, but it's not <i>real</i> ABA." Etc. <br /></p><p>The summer I spent interning at an ABA school in 2009 had such a big effect on my life. I don't think any experience could shown me more plainly the depth of disrespect and contempt that this world has for disabled people, and the extent to which "helpers" can be confident in doing harm.<br /></p><p>I wrote many blog posts processing what I saw at the school. One of my posts--<a href="http://adeepercountry.blogspot.com/2009/11/they-hate-you-yes-you.html">They hate you. Yes, you</a>--was shared around in a few places. I never named the school. In my experience, while lots of people write and talk about their experience seeing abuse in an ABA setting (or working in an abusive ABA setting) they usually don't name the school or center.</p><p>I don't know about everyone else but in my case, I didn't want the school to find out I'd written about them because I wanted to use them as a reference. Even though it was an awful place, I didn't have much work experience and wanted to list as many things as possible on a resumé. I was 20/21/22 and always worried I wouldn't be hired. From <a href="https://yorkspace.library.yorku.ca/xmlui/handle/10315/35587" target="_blank">I'm a Juggling Robot</a>, the brilliant ethnography of ABA therapists by Julia Gruson-Wood, I know that it's pretty common for people who work in autism services to hide their critical opinions about ABA to avoid damaging their professional life. Obviously, I didn't hide my critical opinion altogether, but I did protect the school.<br /></p><p>Now I am 35 and don't need to list summer internships on a resumé, so it seems worth saying that "The School" was the New York Center for Autism Charter School in Harlem. When I interned there the school was only 3 years old. Now it has been around for 17 years and they have expanded to two schools.</p><p>Every few years, I would go on their website and see who was still working there. It's not possible to see school staff, but I did see that some of the staff moved up to leadership roles--including specific people whose abusive actions I described in my post.</p><p>They are still working in the field, they have moved up in their jobs, and they have <i>more</i> kids now. They're doing <i>better</i> than they were then. The school doesn't appear to have any self-advocates on their board. Even if they stopped abusing kids, which I highly doubt, they have never apologized or been held accountable.</p><p>Why can't people admit that this isn't over? Why do I feel so nervous as I type this, like I'm still, somehow, going to get in trouble?<br /></p>Amanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.com0tag:blogger.com,1999:blog-8466691337834051176.post-11263581080489873412018-08-22T14:29:00.000-04:002018-08-22T14:31:01.092-04:00Inaccessibility 2: 2 Menus 2 FuriousI was rereading my <a href="http://adeepercountry.blogspot.com/2017/06/inaccessibility.html">Inaccessibility post from last year</a> and just wanted to add some addendums. Sometimes thoughtful waiters at restaurants will bring everyone else a glass of water, and bring Anna water in a disposable cup with a lid and straw.<br />
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Your mileage may vary (I can't help thinking of the <a href="https://thedealwithdisability.blogspot.com/2009/09/waitress.html">Deal with Disability post about being brought a sippy cup</a>) but this really warms my heart. I can see that the waiter has noticed Anna, seen that she's severely disabled, thought about what accommodation she might need, and decided to bring this cup, presumably because they know other disabled people who drink out of a cup like this.<br />
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However, it's actually a waste of the cup and straw because Anna can't drink out of a straw. She drinks out of an adaptive cup or a squeeze water bottle (which she brings with her). Or, in a pinch, I very messily pour drinks into her mouth out of a glass.<br />
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It means a lot to me when people are paying attention and thinking about what a disabled person might need, to the point that I have a very mixed reaction when the disposable cup appears. It's so considerate! But...it's <i>wrong</i> for us. It's nice when staff at our haunts get to know us and know what we need, but if you don't know, it's better to ask.<br />
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Also, in the previous post I complained that the waiter didn't bring menus or glasses of water for Anna or her friend "Otter." I realized maybe I should explain why I have a problem with this, as Anna and Otter each bring their own water bottle, may not be able to read menus, and can't order their own food. The waiter was technically correct in judging that they wouldn't drink out of the glasses of water and wouldn't pick up the menus, read them, and order from them. The reason I don't like this is:<br />
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1)This assumption is wrong a lot of the time. Somebody may be able to drink out of a glass (maybe with a straw, maybe not); definitely may be able to read their own menu and order for themself; and may still enjoy having and looking at a menu if they can't read or order. <a href="http://laughingatmynightmare.tumblr.com/">Shane Burcaw's blog</a> has some good posts about being treated like a child at restaurants and stores, when he can order for himself.<br />
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2)Even if someone MAYBE doesn't need a menu or water, if you normally bring a menu or water for <i>each person at the table</i>, then by automatically bringing 2 menus and 2 glasses for a table of 4 people, you're implying that you only see 2 people at the table. In the general population of "able-bodied" people, some of them have a regular order that they always get, and it's certainly not like two friends would shrivel up and die from sharing a menu. But it's still common to bring everyone a menu. Just bring everyone a menu because everyone is a person. Why.Amanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.com0tag:blogger.com,1999:blog-8466691337834051176.post-86216970423281083262017-06-11T16:41:00.001-04:002018-08-22T13:51:00.896-04:00InaccessibilityI was meaning to write about experiences I've had in stores and restaurants with my beloved boss Anna. A few things about Anna are relevant to these stories. She uses a wheelchair; she needs help eating; she sometimes impulsively grabs or knocks over things in her field of vision; and she has severe, frequent seizures which require a specific medical protocol.<br />
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A person in our situation has a weird line to walk. If I just got really mad about things being inaccessible, it would seem aggressive. Despite accessibility being the law, there's a degree to which people seem to think it is just an extra perk you can add to your business, and actually complaining about inaccessibility is entitled behavior. Also, it seems like if something isn't 100% inaccessible, you're supposed to be happy with that, even if their attempt at accessibility doesn't really work for you.<br />
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And you do catch more flies with honey than you do with vinegar etc. But the truth is that if a disabled person can't get into a store or restaurant, isn't treated respectfully when they are there, or has to do a lot of extra work to access the same things as everyone else, this isn't fair and makes it hard to do everyday things.<br />
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For me personally, attitudes are more important than physical accessibility. If staff apologize and are willing to help a customer because something's not accessible (for example, bringing them items from a section of the store that the customer can't get into) I am not as bothered. If they act clueless or hostile about how inaccessible their business is, that's when I start to get really irritated.<br />
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Anyway, here are some stories.<br />
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<b>Walgreens</b><br />
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Anna and I used to go to a certain Walgreens, but it was renovated and the new lift was too small for Anna's wheelchair. She got stuck in the lift while we were trying to go to the second floor of the Walgreens. With help from store staff, she got un-stuck from the lift, but it was clear that we wouldn't be able to get upstairs.<br />
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A store staff reassured me this wasn't a problem, because he would get us whatever we wanted from upstairs.<br />
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I explained that I wanted to show Anna a few ribbons so that she could choose between them, so I wasn't sure how to pick out what to buy if she couldn't go to the second floor.<br />
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"You can go and get them to show to her," he said.<br />
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"Hm, I don't want to leave her alone," I said. "Could you go and bring back a few ribbons so she could choose between them?"<br />
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"Oh, I can stay with her while you go," he said cheerfully.<br />
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(I just want to reiterate that the reason Anna has 24 hour care isn't because she can't stand to ever be alone. It's because she needs help with a lot of things and has seizures. It's not <i>hard</i> to take care of Anna, but it is specific; this random guy would not do as a replacement for me if she had a seizure or needed any kind of help.)<br />
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Not knowing how to argue with someone who was not interested in helping me the way I asked, I hurried upstairs, grabbed the first ribbon I saw, and came back as fast as I could. After this, I never brought Anna back to the Walgreens.<br />
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<b>Crystal Store</b><br />
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I thought about taking Anna to a crystal store. When we came up to the store, two friendly guys eating at an outdoor café took an interest in Anna. She had a big smile on her face and was very charming. They talked up the store to us, telling us it was really fun. I pushed Anna in down a narrow hall, but then saw that the hall ended in steps.<br />
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We came out again. The guys at the café were sad to hear that we weren't able to go in. Then the ladies from the crystal store called after us that they had a ramp they could put over the stairs--they just had to find it. "See, you will be able to go in!" the guys encouragingly said to Anna.<br />
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Anna and I waited as the ladies looked for the ramp. When they found it, it was terrifying looking--steep, slippery, and narrow. It didn't seem very stable when they put it over the stairs, and I couldn't bring myself to actually try pushing Anna down it. We left, to the disappointment of our new friends.<br />
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<b>Mexican Restaurant</b><br />
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Anna and I were at our favorite taqueria. If I go there by myself, the staff ask, "Where is the girl?"<br />
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Where you're supposed to stand in line is organized by ropes. According to Google they're called "crowd control stanchions"--they're, you know, those ropes on poles that show you where you're supposed to wait in a line. Anyway, at the taqueria, the space between the ropes is way too small for Anna's wheelchair to fit. So we couldn't wait in line. There were only a few people in line, so I just awkwardly waited with Anna <i>next</i> to the line.<br />
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A lady in the line looked at us. She moved the poles apart at the beginning of the line so that the entrance was wider. "Does this help?" she asked.<br />
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"Aw, no, I think we'd be able to get in, but we would just be stuck," I said. It was true--the rest of the line was still very narrow.<br />
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A minute later, the lady said, "That table over there is free. You could put her over there while you're in line."<br />
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As I've mentioned, I really cannot leave Anna unattended in most places. This sounds overdramatic, but in addition to seizures, there's just the sheer variety of stuff she might be interested in grabbing and knocking over--glasses, tables, bowls of chips, napkins, plants, etc. If I'm looking at her and watching what she's looking at, I can usually get an idea of what things are in danger and need to be moved out of reach, but sometimes I don't see things coming or she changes her mind. The table she was happy to rub her face on a moment before now becomes an enemy that must be shoved away from her as hard as possible, making dishes go flying and stabbing the side of the table into anyone who is sitting across from her and doesn't get out of the way fast enough.<br />
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Anyway, if I have to get up while we're sitting at a table together--say to get a straw or something--I go extremely fast and practically walk backwards so I can see if Anna is thinking about wreaking any havoc. This is for, like, a thirty-second trip at the <i>most</i>. The idea that I could wait in line, order food, and pay for it while Anna sits by herself at a table is ludicrous. Sorry Anna but it's true.<br />
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Not really knowing what to say to the lady, I gave the non-response of, "Yes, that looks like a nice table. I think that's where we will sit after we get our food."<br />
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<b>Other Mexican Restaurant</b><br />
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I was very excited because we'd made plans to go to this restaurant with our friends "Otter" (another severely disabled lady) and "Penguin" (Otter's aide). I'd always wanted to take Anna there because it has an extensive menu and ornate decorations that I thought she would enjoy looking at. I'd worried because it is crowded at times, but I'd done my research and concluded that if we went there for a late lunch instead of dinner, it wouldn't be crowded at all. This would be nice because the four of us take up a lot of space at a table, both because of wheelchairs, and because I sometimes sit Anna next to the table instead of at the table so she won't push the table into Otter and Penguin.<br />
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When Anna and I came in, I explained to the waiter that we were waiting for two friends, one of whom was also in a wheelchair. He drooped with unhappiness and repeated, "<i>Two wheelchairs</i>?" like he was saying, "Two chupacabras?" Having one chupacabra in your restaurant is bad enough! "Well...I'll have to set you up in the back," he said. "There's nowhere else that will work."<br />
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(Looking around the restaurant, I saw other tables that would work, but I didn't press the issue. I think he was partly laboring under the delusion that everyone in a wheelchair wants to sit <i>at</i> the table. I know many people, like Anna for example, who don't have to sit at the table when they eat. I also know some people who <i>can't</i> sit at the table when they eat because they lean back in their chair and their aide feeds them standing up. I really wish restaurant staff would not try to choose or set up a table for wheelchair users without finding out what the person actually needs.)<br />
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Otter and Penguin arrived and I pushed Anna a little further into the restaurant to make room for them. "You'll have to wait!" the waiter admonished me. "I have to set up the table!" (As predicted, the restaurant was almost empty, and no one was eating in the section where Anna and I were.)<br />
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It turned out that setting up the table just involved removing a few chairs from the table and a few barstools from the bar. But I wasn't sure I'd be able to feed Anna if she sat where the waiter was planning for her to sit. "She needs to sit there," he said. "There's nowhere else she will fit." I ended up being able to move the remaining chairs and barstools around to get her into a better place.<br />
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Then, the following things happened, some of which I wouldn't have cared about if they hadn't all happened in combination:<br />
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1. The waiter only brought menus for Penguin and me.<br />
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2. He only brought glasses of water for Penguin and me. Then he asked us if he should bring water for Otter and Anna.<br />
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3. Penguin: How big are the meat strips in the chicken or steak quesadilla?<br />
Waiter: This big.<br />
Penguin: Then [Otter] will have chicken strips.<br />
Waiter: The chicken strips are just as big as the steak strips.<br />
Penguin: Yes, but chicken will be easier for her to chew.<br />
Waiter: Okay, but you should probably still cut them up into smaller pieces.<br />
Penguin: Yes, I will.<br />
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4. Otter and Anna are not dainty eaters. They have motor issues! Plus, Otter <i>loves</i> food. She once picked up an entire omelet in her hands and started feeding it to herself like you would feed a carrot to a horse, while ham and cheese fell out the back of the omelet and trickled down her shirt. That is just Otter's way. Penguin and I always have a lot of napkins handy to catch food and wipe our bosses' faces, hands, and clothes. There just isn't any amount of thriftiness that would make us not need all of these napkins, if we don't want Anna and Otter to be wearing their lunch.<br />
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Anyway, Penguin asked the waiter for "a stack of napkins."<br />
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He said very sternly, "I can bring you a<i> few</i> napkins, but I can't bring you a <i>stack</i> of napkins. We're trying to <i>conserve</i>."<br />
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He brought us three napkins. Fortunately, we had both collected unused napkins from a previous lunch for a situation just like this one.<br />
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5. I ordered a quesadilla for Anna and me to share. She eats slowly, so by the time she was done, Penguin and Otter had both finished their food. I hadn't eaten anything yet because I had been feeding Anna. I was about to start eating my half of the quesadilla when the waiter appeared and asked if I wanted to put it in a box. I was startled. "No, I'm going to eat it!"<br />
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"<i>Really</i>?" he said. "Well...to be determined, I guess." He went away again.<br />
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(Again, barely anyone was in the restaurant--we weren't taking up anyone's table with our slow eating.)<br />
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I'm not sure I can fully explain my gripe with #3 and #5, but all in all this is one of the most unfriendly experiences I've had in a restaurant with Anna. A <i>stack</i> of napkins!<i> Quelle horreur!</i>Amanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.com2tag:blogger.com,1999:blog-8466691337834051176.post-68118588602785950812016-03-13T17:40:00.000-04:002016-03-13T17:41:44.047-04:00Why nursing homes are hellish placesI just found something I wrote last year and thought it was worth posting. Warning: it's very dark!<br />
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Nursing homes are hellish places. I can’t speak for every nursing home in the world. I worked in one for 8 months, have been in a few other ones (training, working with clients who lived in nursing homes, etc.), and have been a support worker in various other settings (some of these things are also true in those settings). I think there’s a system in place that causes residents of nursing homes to often be in hellish situations–treated roughly, severely physically neglected, and denied kindness, respect, and freedom at a time in their lives that is likely to be very confusing and painful.</div>
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The people who appear to be responsible for this are the staff who work directly with the residents–the aides and charge nurses (LVNs). And these are the easiest people to blame when something bad happens, like a resident getting injured or sick due to neglect. Not only does it seem to be the aide or LVN’s fault, but they’re often from marginalized groups–poor, women, immigrants, POC–so it’s easier for higher ups to project something negative on them. They weren’t empathetic, they’re not kind, they were too lazy to take care of their resident. Due to language or cultural barriers, the aide may not be able to present themselves in the best light or make the best impression. It also is easier to fire or punish this person than to change the system.</div>
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However, what’s actually happening is that they’re put in an impossible situation.<br />
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They’re paid very little, and aside from the obvious stresses and difficulties of being poor, they may be doing things like picking up extra shifts–so, like, working 24 hours in a row. They might be trying to raise kids, work another job, or be in school at the same time so they may not be sleeping much or at all. Obviously, all this stuff affects how functional someone is and how fast/well they can work.</div>
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But there’s the other thing which is that too much work is assigned. Like, when I worked at a nursing home, the minimum required ratio at night was 1 aide to 24 residents. (Often it was like thirtysomething residents–but since that wasn’t actually legal I won’t talk about that.)</div>
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So, let’s say 12 of these people aren’t continent and are supposed to be changed every 2 hours, let’s say changing & cleaning someone takes 10 minutes. (Which I’m absolutely sure someone who doesn’t know anything about it would say is SO much longer than it really takes! You should be able to do it in 5 minutes! But also it’s against the law to have diapers and wipes out and visible on a table in someone’s room, they should be away in a drawer. But you should be able to do it in 5 minutes even though you might have to change the person’s bed and clothes. Well…I’m saying 10 minutes. Sorry.)</div>
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Anyway, doing that job already takes 2 hours. But also there’s helping people who put on their call light asking for help getting to the bathroom, or for a glass of water or something. So let’s say 3 people do that, the water takes 5 minutes. One person goes to the bathroom and back in 5 minutes. The other person goes to the bathroom and sits there for a long time–you’re supposed to stay with this person because they are a fall risk. (You are responsible if you leave them alone and they fall.) So the whole trip takes 15 minutes. Now we’re at 2 hours and 25 minutes.</div>
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Also, someone is confused and is getting out of bed, walking up and down the hall, and walking into other people’s rooms and touching them, which is scaring those people. You realize this is going on, so you go and convince that person to go back to bed. This takes 10 minutes. (Also, the LVN finally comes on the hall–you haven’t seen her all night–and wants to drug the person to keep them from getting up, which I’m pretty sure is illegal, and is definitely a horrible thing to do. But maybe you can see where this kind of decision is coming from.)</div>
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We are now at 2 hours and 35 minutes for what was supposed to be 2 hours of work, and our hypothetical self is working without ever taking a break or going to the bathroom or anything. Also, I forgot that you’re supposed to be filling out this computerized chart of what everyone ate and if anyone went to the bathroom, and if so, how much, etc. I don’t really remember how long this takes overall, but let’s say that you do it for 20 minutes during this “2 hour period.” So we’re basically at 3 hours. You are working at a speed that isn’t realistic; you’re also probably exhausted because of your life circumstances that I mentioned earlier; and you are 1 hour behind in your work.</div>
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Oh, by the way, pain: getting the nurse (who is stressed & busy) and trying to get her to give a pain pill to someone who is screaming in pain. And, by the way, emotional pain, just kidding. Like, someone is terrified, or miserable. That person is crying. You’d like to go and talk to them and keep them company. Just kidding, it’s 3 people. You’d like to go talk to these people. But you can’t talk to any of them, you don’t have time. But you go talk to one of them.</div>
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Then, you hear an alarm going off, indicating that someone who’s a fall risk is walking around, but you’re pretty sure it’s someone who, while she’s technically a fall risk, is always getting up and walking around by herself, but she never falls. So you keep talking to this person who’s upset. The other person falls and is seriously injured. Also, you’re in a lot of trouble.</div>
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Basically, the actual circumstances of the job encourage you to not care about people at all–to do a half assed job with the physical act of taking care of people (not cleaning them very well when you change them; just throwing random clothes on them; not brushing their teeth; transferring people in a very fast brusque way that is physically uncomfortable for them), never mind their actual preferences (you’ll help them get to the bathroom when YOU can carve out the time to do that) or God forbid their FEELINGS (how could you possibly have time to just sit and talk with someone?). The job is SET UP LIKE THIS because the workload is not realistic. Meanwhile, the higher ups expect you to get all your work done, AND the things they officially ask of you are like, to be gentle and polite and respect people’s preferences.</div>
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So if the aide doesn’t get their work done or is short with people, the higher ups are like, oh they’re a bad aide. (To be clear, I obviously don’t understand why someone would speak cruelly to an old person they’re taking care of. I do understand neglect and roughness in this context–the former of which especially can be really dangerous.)</div>
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And the higher ups maybe aren’t evil. I’ve never been one. But when I was an aide, the nurse manager was this very soft spoken lady who seemed very sweet and caring (btw she also came off kind of upper class and seemed to find the working class aides rude and uncaring and stuff) but like…at best, she just didn’t get it! And I’m guessing that the further away you get from the actual situation, the less you get it. And those are the people who set the job up.</div>
Amanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.com2tag:blogger.com,1999:blog-8466691337834051176.post-66627962202346002462016-02-01T00:32:00.001-05:002016-02-01T00:32:25.052-05:00The Softer Side of Searing<div class="p1">
The New Yorker has been kind enough to publish my letter, where I point out that Autistic kids don't have black mirrors for eyes. (<a href="http://www.newyorker.com/magazine/2016/02/08/the-mail-from-the-february-8-and-15-2016-issue">Their version</a> // <a href="http://adeepercountry.blogspot.com/2016/01/i-wrote-great-letter-to-new-yorker.html">my initial version</a>.) I really appreciate them doing this because I hope it will make their readers consider the effects of dehumanizing language. I don't refer to my hurt feelings, but to the way people may behave after being exposed again and again to the idea that Autistic kids are bad tempered, bad to be around, and different to the point of being inhuman.</div>
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I also hope that the wording of my letter will remind people that autism is just one of the many disabilities that exist. I feel this is an important thing to remember, both for Autistic people's benefit and for the benefit of people with other disabilities.</div>
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When the New Yorker first edited my letter, I didn't like some of the changes they made. I worried that they would not publish my letter if I argued, but the Letters Editor was very nice and accommodated the 3 requests that I had.</div>
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However, I want to point something out. I summarized the black mirrors quote this way:</div>
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<i><span class="s1">Shapin </span>claims that Autistic children's eyes "are not windows to their souls, but black mirrors."</i></div>
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The New Yorker wanted to change it to:</div>
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<i>Shapin mentions the struggle of parents whose autistic children’s eyes "are not windows to their souls, but black mirrors."</i></div>
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My original letter did not mention parents at all, nor did it need to. It was only about a 9-word phrase describing Autistic kids' eyes. Knowing that this phrase appeared in a sentence about parents does not explain or excuse it. It is just as bad to write, "Autism parents suffer because their kids have black mirrors for eyes," as, "Autistic kids have black mirrors for eyes"--and for the purposes of my letter, I don't see the value of one over the other.</div>
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<br /></div>
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<span class="s1">I explained why I did not agree with the edit--"</span>Bringing up parents' 'struggle,' when it's not relevant to my point, is something that I don't agree with because I think media discussions of autism are already biased toward the experiences of parents. (Of course their experiences are important; they are just not the only perspective, and they're often treated that way.) That line doesn't represent how I would write."</div>
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<div class="p1">
It's a bad habit the media has when discussing autism--always inserting the perspective of parents, whether or not there is a reason to do so. I've read a lot of great deconstructions of this by Autistic people, but my favorite is Zoe's parody article from a few years ago, <a href="http://illusionofcompetence.blogspot.com/2012/07/person-with-autism-manages-to-do.html">Person With Autism Manages to Do Something</a>:</div>
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<br /></div>
<div class="p7">
<i>How does Joe Autie feel about his achievement? “We’re very proud of him,” said his mother.</i></div>
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<br /></div>
<div class="p1">
Anyway, I suggested that if the editor wanted to provide context, it would be better to quote more of the review. Now the letter includes the entire sentence that the black mirrors line is from:</div>
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<br /></div>
<div class="p8">
<i>It’s a searing experience to have a child who doesn’t talk, who doesn’t want to be touched, who self-harms, who demands a regularity and an order that parents can’t supply, whose eyes are not windows to their souls but black mirrors.</i></div>
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<br /></div>
<div class="p1">
This edit is okay with me, but does have an unfortunate result. My letter begins with this quote, but only talks about black mirrors--giving the impression that there's nothing to say about the rest of this quote. However, it's actually pretty awful from beginning to end. I just decided to write in about "black mirrors" because it was the most obviously wrong and offensive part of the sentence, and I felt I could write something very short about it.</div>
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<br /></div>
<div class="p1">
I want to address the rest of the sentence, though, except for the part about the "searing experience." If people feel "seared" by having Autistic kids, I can't argue with that--it's how they feel. I feel "seared" by reading that it's "searing" to have a kid like me--and that's how <i>I</i> feel. If feelings can't be criticized, it's a tie. However, I can and will criticize the list of reasons that Autistic kids are "searing."</div>
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<div class="p1">
After "black mirrors," what stuck out to me is the self harm--specifically the construction, "It's a searing experience to have a child who self-harms." I'm afraid that this is such a common construction, when writing about autism, that it's not obvious what is wrong with this picture. Imagine the following description of a violent accident:</div>
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<br /></div>
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<i>Kendra, a kindergarten teacher, slipped on the steps of her house; she fell and cracked her head open on the sidewalk. It was very upsetting to all the people on the street to see Kendra lying there. Kendra's husband fell into a deep depression, unable to deal with what had happened. Kendra's students were very distressed when she could not come back to work because of her brain injury.</i></div>
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Hopefully this example gets the point across. Everyone has good reason to be seriously affected by Kendra's accident, especially her husband. But we don't expect to have their perspectives emphasized to the point that they entirely drown out Kendra's perspective of her situation. Her physical condition is only described in terms of its effect on others, and her feelings aren't described at all.</div>
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<div class="p1">
That is just a ridiculous way to describe something bad happening to Kendra--because first and foremost, it happens to Kendra. It does not happen to the people around her, no matter how much they love her. I can't speak to every person's experience of self harm, but in my experience it feels pretty bad internally--and physically, of course, it hurts a lot. No one else's reaction to self-harm is as "searing" as being in that situation yourself. To frame a child self injuring in terms of how someone else feels about it is unbelievably unempathetic to the child; and when it happens over and over in the media to the point of being unremarkable, that is really disturbing.</div>
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<br /></div>
<div class="p1">
However, as I read the multi-faceted "searing" quote again and again, what stands out the most is the implication that autism is volitional--that Autistic children are being Autistic on purpose, just to torture the people around them. I addressed this idea a few years ago in my post <a href="http://adeepercountry.blogspot.com/2012/11/behavior-vs-ability_20.html">Behavior vs. Ability</a>. I was saying that those who are more empathetic to a disabled person will usually see the person's actions/inactions in terms of what they are not able to do, the fact that they may have to do things in alternate ways, and that they are trying to cope. On the other hand, there's the colder view that the actions are all there is--the person "prefers to do this," "refuses to do that." No reason is given, and no acknowledgment is given to the idea that a reason might exist. The person is just being bad.</div>
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<br /></div>
<div class="p1">
It's subtle. But look what Shapin says:</div>
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<br /></div>
<div class="p8">
<i>a child who doesn’t talk</i></div>
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<br /></div>
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Why not "a child who <i>can't</i> talk?" Does Shapin mean to say that kids who can't talk are just refusing to talk? Does he really believe they can talk?</div>
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<br /></div>
<div class="p8">
<i>a child who demands a regularity and an order that parents can’t supply</i></div>
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<br /></div>
<div class="p1">
Why not "a child who <i>needs</i> a regularity and an order that parents can't supply?" I doubt the child is drawing up a contract of "demands" like a rock band demanding green M&Ms in their rider. The child is <i>upset</i> when things aren't regular and orderly. The child is<i> struggling</i>, not "demanding" things.</div>
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<br /></div>
<div class="p1">
(Imagine if the New Yorker had wanted to edit my letter to discuss "the struggles of children with black mirrors for eyes" instead of "the struggles of parents who have children with black mirrors for eyes." It's really too bad how surprising that would be.)</div>
<div class="p1">
<br /></div>
<div class="p1">
And how come the child "doesn't" talk, but the parents "can't" supply order? Why not say "the parents <i>refuse to</i> supply the order the child needs?" Because Shapin has empathy for the parents and understands there are things they can't do--but the child is just a mirror-eyed cipher.</div>
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<br /></div>
<div class="p1">
Well, I'm just spitballing here--I don't want to go point by point through the whole sentence and edit everything to make it sound more like the child is in fact disabled--not "demanding" the things they need to function, not refusing to talk to "sear" their parents, not self-harming just for the hell of it. At that point, the sentence would no longer be as damaging to Autistic kids, but it still wouldn't be very good. ("This is the worst writing I've ever seen in the New Yorker," was my mom's comment, although her judgment may have been affected by all that searing I did to her.)</div>
<div class="p2">
<br /></div>
<div class="p1">
Anyway, I just wanted to give the searing sentence a more thorough look, and now I'll shuffle off with 2 boring postscripts:</div>
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<br /></div>
<div class="p1">
1. I want to be very clear that I was not offended by the idea that Autistic kids' eyes look black, or that they look different from other people's eyes. I was offended by the context and implications. I don't like the resemblance to the <a href="https://en.wikipedia.org/wiki/Black-eyed_children">Black-Eyed Children urban legend</a> and to the purely black eyes (including black sclera) in a lot of <a href="http://tvtropes.org/pmwiki/pmwiki.php/Main/BlackEyesOfEvil">ghost/alien/monster characters</a> in movies and TV. I don't like the idea that our body parts aren't flesh but metal, or the idea of us having "nothing behind our eyes" where other people have souls.</div>
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<br /></div>
<div class="p1">
However, lots of people do have glass eyes, metal spines, and so on. There's nothing supernatural about that either. When I jump on this quote like, "How dare you say this!" it is NOT because I think there's something horrific or monstrous about anybody who really has glass eyes, has very different looking eyes (no pupils, etc.), or doesn't have any eyes at all. It is because of the context and the tropes it's drawing on. And while the insult was specifically aimed at Autistic people, I don't think it does blind people any favors either to talk in such a weirdly tragifying, spooky way about eyes that look different, or eyes that do not focus and make eye contact.</div>
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<div class="p1">
2. It's hardly worth responding to, but Shapin says some really false and insulting things about the neurodiversity or Autistic self advocacy movement. I assume these are regurgitated from the book. For a smart and clear self advocate response to <i>In a Different Key</i>, that explains exactly how untrue these assertions are, I recommend <a href="http://www.vox.com/2016/1/21/10801846/autism-in-a-different-key">Ari Ne'eman's review</a>.</div>
Amanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.com6tag:blogger.com,1999:blog-8466691337834051176.post-90061097517100691922016-01-22T00:33:00.001-05:002016-01-22T00:42:03.806-05:00I wrote a great letter to the New YorkerIn Steven Shapin's review of <i>In a Different Key</i>, he claims that Autistic children's eyes "are not windows to their souls, but black mirrors." Actually, I'm Autistic and since I was a child, I've had completely ordinary-looking eyes--irises, pupils, and so on. I've known a lot of Autistic kids and adults, and I can testify that none of us have black mirrors for eyes.<br />
<br />
Some people don't do much communication through eye gaze, which is presumably what Shapin meant. Many Autistic people don't make eye contact because it hurts us. Blind people don't make eye contact because they cannot see. Some people with other disabilities (like Parkinson's disease) cannot control the motions of their eyes. I've met all kinds of people who don't make eye contact, but I've never met anyone whose eyes I would describe as black mirrors. It sounds like something out of a horror movie.<br />
<br />
Now, this is some figurative language, so maybe I'm missing the point. I'm Autistic, after all. But I think and think about this phrase, and all I see is some very negative, dehumanizing language aimed at children with a developmental disability. In an article that contains several pieces of misinformation about Autistic people, "black mirrors" is the icing on the cake.Amanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.com6tag:blogger.com,1999:blog-8466691337834051176.post-76779578791495828452015-12-22T22:54:00.002-05:002015-12-22T22:58:45.219-05:00Uncanny Valley Blues<span class="im" style="background-color: white; font-family: arial, sans-serif; font-size: 13px;">This is just a vent with no political or artistic import. Here I sit, watching my boss's dad Richard wait on the phone with Covered California, the Obamacare organization. For the last few years Richard has occupied the thankless position of being my unpaid, uncredited support worker in matters of bureaucracy. I can't manage them myself due to difficulties using phones, approaching long chains of tasks, and regulating emotions (i.e. when under a lot of stress I usually zone out and can't do much).<br /><br />Medi-Cal (Medicaid in California) has decided to occupy themselves this holiday season by mailing me some forms and demanding that I complete them in a week or else. Now, I certainly am unable to do this--they're requesting tons of things that would each individually be something I could only do on the best of all possible days. I guess Richard could theoretically do it if it was an emergency, but it wouldn't be very realistic for him either since he has plenty of things to manage aside from tracking down copies of every insurance check I've mailed in the past year.</span><br />
<span class="im" style="background-color: white; font-family: arial, sans-serif; font-size: 13px;"><br /></span>
<span class="im" style="background-color: white; font-family: arial, sans-serif; font-size: 13px;">But aside from the general obnoxiousness, there's the small detail that I am not on Medi-Cal, nor have I applied for it. I exceed the maximum income limit, and I never seriously considered applying for it even when I made less money. Well, I thought about the disabled workers program, but then an Autistic friend applied for it and was denied for not having an intellectual disability, which is pretty much like telling someone they're not blind because they can hear. After that happened to her, I wasn't going to bother. That was years ago.</span><br />
<span class="im" style="background-color: white; font-family: arial, sans-serif; font-size: 13px;"><br /></span>
<span class="im" style="background-color: white; font-family: arial, sans-serif; font-size: 13px;">But for some reason I'm hearing from Medi-Cal because they want to evaluate me, even though I make too much money and they already have that information without me, i.e. Richard, doing any of this busywork they've assigned. After Richard sits on the phone with them forever, we find out that they sent me all these forms because I said I was disabled when signing up for insurance.</span><br />
<span class="im" style="background-color: white; font-family: arial, sans-serif; font-size: 13px;"><br /></span>
<span class="im" style="background-color: white; font-family: arial, sans-serif; font-size: 13px;">Let's review: according to the ADA, a disability is a physical or mental impairment that limits a major life activity. Check. My disability is also on the list of disabilities that can qualify you for disability if you cannot work, the working disabled program if you can, a disability bus fare, and so on. I've been diagnosed with autism twice and I have the paperwork. I'm not applying for any of these things, though, like I said, since I am not eligible for most of them and when it comes to other ones, like free </span><span style="background-color: white; font-family: arial, sans-serif; font-size: 13px;">bus fare, it would be a lot of work to pour into something that I might not get. But. I am, objectively, disabled.</span><br />
<span style="background-color: white; font-family: arial, sans-serif; font-size: 13px;"><br /></span>
<span class="im" style="background-color: white; font-family: arial, sans-serif; font-size: 13px;">A few years ago I used to get upset about the fact that I'm unlikely to ever qualify for any services for my disability. I'd get upset because of the practicalities--I have to recruit other people to unofficially help me, which is difficult for many reasons, not least <i>because</i> of aspects of my disability--but mostly because it was extremely overwhelming and distressing to feel like the reality of my life was being dismissed. I stopped talking and writing about this not because the situation or my feelings improved, but because I realized it was not helpful to dwell on something that made me so upset. Besides, I'm really lucky to have so many helpful people in my life, and that's what I should focus on.</span><br />
<span class="im" style="background-color: white; font-family: arial, sans-serif; font-size: 13px;"><br /></span>
<span style="background-color: white; font-family: arial, sans-serif; font-size: 13px;">And when it comes to Medi-Cal, I do not want it because I don't need it. I hadn't been at all surprised when the Covered California website said I wasn't eligible. That was the end of it. But apparently, a disabled person who isn't eligible for Medi-Cal isn't even allowed to exist and to just answer yes on a form that asks if I am disabled, just as I enter other information about myself like my gender and race. Instead, I have to be badgered with tasks I cannot even do for having the gumption to identify as disabled when the healthcare system doesn't consider me to be so.</span>Amanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.com1tag:blogger.com,1999:blog-8466691337834051176.post-22099776310922063832015-12-20T02:02:00.000-05:002015-12-20T02:02:42.362-05:00Moving the furniture<div class="p1">
I'm 27 years old, "living independently," and just unable to cope with my 2 favorite diners closing in the span of 1 month. Manor Coffee Shop closed in November and I thought, at least Lucky Penny is still around. Then I happened to read online that LP was closing, but I just told myself it couldn't be true even though the article was from May.</div>
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<br /></div>
<div class="p1">
Tonight I'm at LP and I can kind of see that everyone is talking about LP closing, and I want to ignore it and pretend I don't hear it. This is actually kind of embarrassing, that I can't bring myself to make it real by asking Nancy, the waitress, about it. It feels infinitely sad, like I am moving or graduating from college. It just has seen me through a lot of bad times.</div>
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It's not a nice restaurant but that has never been my jam.</div>
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<br /></div>
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It's a big place where one section is always closed, except for a few people eating there who I think are employees or their family members. There is a counter. There are copious green, run-down booths, almost always mostly empty when I go for breakfast or dinner. It is full right at lunchtime, but even then it's not packed.</div>
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<br /></div>
<div class="p1">
It looks out onto Masonic and Geary through big tall windows. It's a very nice view, especially the underpass. It's one of the closest things in San Francisco to the Connecticut and New York state diners I grew up with, which are often in the middle of a highway. There are lots of nice diners (Manor Coffee Shop among them) that are just in regular buildings in the middle of small quiet streets. But there is something magically transitional about a diner with a parking lot that looks out onto streaming traffic; the sense that it's a space in the middle of a journey.</div>
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<div class="p1">
Autistic people are famously attracted to trains, and anecdotally, I sometimes think we're attracted to diners as well. I'm probably wrong, but I can't help associating both things with the big tug-of-war at the center of my mind. I love short visits to strange places, impulses, fleeting impressions; sleeping on somebody's floor; listening to a stranger's totally unrelatable life story and pretending I understand. But my memory and my processing speed just aren't good enough for me to be able to function in that kind of life. If things aren't exactly where and how I expect, I can't do much.</div>
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<div class="p1">
Trains and diners provide a happy medium where you can watch the world go by while ensconced in a comfortable booth. You get to stay passive and do pretty much the same thing, while people and places rush over you without making the demands that they do when you've actually committed to them. The menu offers lots of possibilities, but laid out and laminated.</div>
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<br /></div>
<div class="p1">
This year, I guess, I'll be forced to make good on my plan of getting to know some new diners and visiting them nervously until they don't make me nervous anymore.</div>
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<div class="p1">
Some contenders: Tennessee Grill and Bashful Bull Too, both on Taraval Street; and Hamburger Haven, on Clement. But even though San Francisco doesn't seem like the place for a lot of diners, there are actually tons more options, which is just the kind of freedom I don't like.</div>
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///</div>
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<br /></div>
<div class="p1">
Woman: When did your father's father die?</div>
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Man: James? In 1955. It's funny because I was just thinking about this in the shower today.</div>
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Woman: I was thinking about it while we were watching the movie. Because I was thinking about your grandma.</div>
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<br /></div>
<div class="p1">
They both have interestingly powerful voices. It's hard to explain it exactly--every phrase just sounds kind of forcefully thrusted, like they're being sarcastic ("because I was THINKING about your GRANDMA"). Can't see woman's face so for some reason was assuming they're just friends, not married, because I'm imagining she's younger than him--she has brown hair and man has white hair. Imagining they are friends who spend a lot of time together because they keep talking about where they will go to eat after Lucky Penny closes. Where's open all the time and always empty and there's always parking, they ask each other.</div>
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</div>
<div class="p1">
"I guess it's just progress," she says. "Which I have trouble with. It's like Curly's, how Curly's is nicer now but you had feelings about how it was when it wasn't nice, even though you know that it's nicer now, it just makes you feel sad."</div>
Amanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.com0tag:blogger.com,1999:blog-8466691337834051176.post-8798013438145055562015-06-13T00:49:00.000-04:002015-06-13T00:55:15.495-04:00Sensory Issues<div class="p1">
Something like this happens:</div>
<div class="p2">
<br /></div>
<div class="p1">
1. I'm in college, in a psychology class, where the professor tells us that Autistic people don't care about other people. We only see them as objects to get something from. (She knows I'm Autistic and she's taught Autistic students before.)</div>
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2. A friend of my friend informs her that I will never care about her because I'm Autistic.</div>
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3. <a href="http://disabilityinkidlit.com/2015/04/04/review-the-curious-incident-of-the-dog-in-the-night-time-by-mark-haddon/">One of the most popular books in the world </a>is about an Autistic character who doesn't care about people and wishes that everyone else in the world would die. I see people reading this book all the time, including people I'm close to, and it has been recommended to me so I can learn more about autism.</div>
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<br /></div>
<div class="p1">
4. After a mass murder, I hear people speculating that the murderer must have been Autistic.</div>
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<br /></div>
<div class="p1">
Something like this happens: my feathers are ruffled. I feel hopeless about life; I feel like I can't trust anyone. I want to confront the person who said something. I don't want to feel obligated to be nice to them. I feel betrayed if the person was someone I liked and trusted.</div>
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<br /></div>
<div class="p1">
If I talk to anyone about this, most people respond calmly and cheerfully. Even close friends and family aren't hurt or angry on my behalf. They have no emotional reaction--they often seem a little bored that I've brought up something so trivial--and if they even intellectually condemn what happened, their focus is on telling me that it isn't so bad.</div>
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<br /></div>
<div class="p1">
The person didn't mean it like that.</div>
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<br /></div>
<div class="p1">
Well, a lot of people have that misconception about Autistic people. They just don't know any better.</div>
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<br /></div>
<div class="p1">
I shouldn't be so sensitive. I should get over it.</div>
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<br /></div>
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They wouldn't think that if they got to know me.</div>
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<br /></div>
<div class="p1">
Mysteriously, the last statement--a compliment--is the one that bothers me the most.</div>
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<br /></div>
<div class="p1">
Why be modest? No one else is going to say anything good about me once they know I'm Autistic. So I'll admit that I'm a kind, caring person. It's certainly the way I am most often described by people who don't know I'm Autistic. As I leave a room I sometimes hear people exclaiming, "She is so sweet!" I always do my best to be kind and polite to everyone, I volunteer, and I've chosen to take care of other people for a living.</div>
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<br /></div>
<div class="p1">
I'm pretty much as far from the Autistic stereotype as I could get. So yes, it is probably true that if certain people were forced to spend time with me, they would eventually have to admit that I care about other people, and maybe they'd even start to wonder if this is true for other Autistic people (but I doubt it; exceptionalism is a hell of a drug). Yet somehow this fact is completely inadequate and unsatisfying to me in every way.</div>
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<br /></div>
<div class="p1">
For many people, there's a duality between disabled people--an abstract group--and the disabled person you know. People just cannot get their heads around the idea that ableism really does affect their disabled friend or family member. How can a nice pink-collar Manic Pixie Dream Girl like me possibly be affected by the idea that Autistic people are serial killers? I'm obviously not a serial killer if you get to know me!</div>
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<br /></div>
<div class="p1">
The rub is obviously that most people don't know each other and that most acts of discrimination aren't committed between close friends or family members. I'm supposed to be comforted by the idea that my friends and family members know I care about other people, and completely desensitized to the fact that doctors, therapists, potential employers, police, judges, or jurors might think I don't.</div>
<div class="p2">
<br /></div>
<div class="p1">
Even if you put aside situations where I could be concretely hurt or disadvantaged because of those stereotypes, there's still the daunting task of having to convince new people in my life that I care whether they live or die. Specifically, the fact that it's completely horrible to assume I don't care about that; and the fact that I shouldn't have to prove something so simple; and the question of how, having proved I meet a minimum standard for decency, I'm supposed to settle down and be friends with someone who assumed I didn't.</div>
<div class="p2">
<br /></div>
I've been thinking about this whole thing a lot lately, and I do feel a lot more friendly toward these responses than I once did. I think, if people care about me, they think it is kinder and more comforting to believe that these things don't matter; that I'm just a cuddly Autistic snowflake floating around and those kind of ideas can't ever really hurt me. I am <i>their </i>friend, <i>their </i>family member. They know I'm a nice person (even if their ideas about Autistic people in general are negative) so everyone must know that I'm a nice person (even if their ideas about Autistic people in general are negative). I must be safe and equal; if someone cares about me, it feels nicer to think that I am just silly and oversensitive, than that I could actually face discrimination for being Autistic.Amanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.com14tag:blogger.com,1999:blog-8466691337834051176.post-49126113650313797092015-06-12T16:11:00.000-04:002015-06-12T16:13:05.784-04:00A DownerIt makes me feel really hopeless when things are always set up so you're only allowed to communicate about things in real time spoken conversations, and if you try to communicate in a different format, people get mad or just won't listen at all. I can't really do real time conversations about anything important because I can't process stuff or put together words fast enough, and it is really frustrating because if you write things, people automatically see it as much more formal and intense. So sometimes, writing is just not really allowed as a format for certain conversations.<br />
<br />
It's not a big deal and I can figure something out in most important situations, but sometimes you just need to talk to someone you don't know that well about something important--but I have to choose between either not having the conversation, having it in a format where I'll be forced to agree with everything they say because I can't follow it, or offending the person by using what they think is the wrong format.<br />
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It's a downer.Amanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.com1tag:blogger.com,1999:blog-8466691337834051176.post-76254709536867623912015-05-16T19:37:00.000-04:002015-05-16T19:37:37.971-04:00Two people are late but the bus is fine<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">Even though the San Francisco public transit system is very extensive compared to other cities, I'm having a lot of trouble using it. When I lived in Cincinnati, I was rarely late, but since moving to San Francisco I have been chronically late to work. I almost was fired from one of my early jobs here, and the only reason it hasn't been a bigger problem in the Dream Job is that we're on a very loose schedule. I am nearly always late.</span><br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">Aside from the problems wheelchair users face on SF buses and trains (which I'm obviously pretty familiar with), the transit system is inaccessible to me as someone with cognitive disabilities, not only because buses and trains don't come at predictable times, but because they don't even have a goal of coming at predictable times. The Muni schedule isn't an actual schedule with times, but just a promise that the 24 Divisadero bus will come every 10 minutes in the afternoon, every 15 minutes in the evening, and so on.</span><br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">The biggest problem with this is making connections. If my other bus drops me off to catch the 24, I could catch the 24 right away, or I could have 10 minutes to wait. It's hard to plan my commute when I don't know if my transfer will take 0 or 10 minutes. Obvously, in real life the bus doesn't always adhere to the schedule--I could be pleasantly surprised by two 24 buses arriving only minutes apart, or stuck waiting for 15 or 20 or 25 minutes.</span><br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">This is a huge problem for me as an Autistic person. I can't respond quickly to surprises and changes, or make snap decisions. I mean it's theoretically possible and I try really hard to be more flexible, but there's only so much I can do about the way my brain is. It would be so great to be able to leave for work at the same time every day and know when I would arrive, or to be able to rely on a Google Maps estimate. Instead, after living and working in the same two neighborhoods for almost three years, I am still almost paralyzed by confusion on the way to work.</span><br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">For example, what if I arrive at the 24 bus stop, and the LED sign says the bus isn't coming for 15 minutes? Now I'll probably be late. I consider walking to Castro Station and trying to catch the 35 bus, because it might happen to come sooner. But sometimes the LED sign is wrong, so as I'm walking along in between bus stops, I see the 24 bus coming by after all. I usually can't process this information fast enough to start running after the bus or trying to get the driver's attention, so I miss the bus and feel stupid because if I had just stayed where I was, I would have caught it and I wouldn't be late.</span><br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">Or, I am waiting at the 24 bus stop and the sign says 7 minutes, but it suddenly changes to 14 minutes. I'm wondering if the sign is malfunctioning, if the bus is briefly delayed and the sign will go back to 7 minutes when the bus starts again, or if I should try to walk to Castro Station to catch the 35. I sit and wait for a minute because I'm overwhelmed, and the sign goes up to 20 minutes. I decide to walk to Castro Station and when I am just a block away, I see the 35 going by. If I had just made my decision faster instead of sitting at the bus stop, I would have arrived in time to catch the 35.</span><br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">Or, I have written down the ID number of the Castro Station stop, so I call the transit information number on my phone, and it tells me when the 35 is supposedly coming--a long time from now. I frantically study the bus map for another option, and decide to walk a few blocks and catch the J train, since I see it on the map. When I get there, there aren't even any train tracks and I realize that in my anxiety, I forgot that the J is an underground train in this part of the city.</span><br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">I feel bad because if I was a little smarter or tried a little harder these things wouldn't happen, but I think we have to admit that our ratio of supercrippery to exhausted hopelessness is maybe set in stone by the mid-twenties. I don't know how much better I'm going to get at handling constant surprises and setbacks; and even though it's usually not a problem at work, I know every time I arrive late, and I feel stupid that I can't succeed at such a simple goal.</span><br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">The public transit in Cincinnati is pretty spare and slow. If I could have driven to my job, it would have taken a half hour; instead, it took almost two hours because I rode two 35-minute buses with a 30-minute wait between them, and had to walk a little bit to get to work. People I knew acted like this was a shocking and awful commute, but I was almost always on time, and I seriously miss having control over this. It's so frustrating that in San Francisco, I can't just choose to be on time, and nothing seems to work.</span><br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">The lack of a real schedule annoys me not just because it is inaccessible to me personally, but because it's such a transparent attempt to avoid being held accountable for not being on time. Yes, people who ride Muni know that it is late a lot, but we can't really be aware of how much. If a bus that's supposed to come at 8:00 comes at 8:10, everyone will know the bus is 10 minutes late. But if there's no set time for the bus to arrive, then people won't notice it's late unless they either know when the previous bus arrived, or if they got to the bus stop more than 10 minutes ago.</span><br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">Last month Muni decided to change the names of a lot of buses, for God knows what reason. I guess it seemed cooler than fixing their actual problems. My favorite bus, the 71, was changed to the 7; the 71L, which has the same route but makes fewer stops, was renamed the 7R. The 16X, a bus with a totally different route, was renamed the 7X, and we can all guess whose dumb ass got on it by accident and ended up wandering around downtown in utter confusion, trying to figure out how to get where I was trying to go. Otherwise no improvements, but I hope they had fun painting the new names on the bus stops (covering up the stop ID numbers half the time and making it harder to call transit information when the LED sign is broken or absent).</span><br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">We know I'm Autistic and will tolerate anything for public transit--the relaxing sight of a dog's urine slowly dripping along the bus floor and onto some beautiful Doc Martens; the excitement when an old man starts beating up five people because they made fun of his boombox; or the thrill of being offered whisky by a startup intern who looks like he's in third grade. Constant stress, and inconveniencing people who have done a lot for me, is no big deal compared to these treasured moments. But straight talk: if I had the motor skills to ride a bike or a skateboard, I'd be on it like white on rice.</span>Amanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.com2tag:blogger.com,1999:blog-8466691337834051176.post-67547015536154269152015-01-16T02:40:00.000-05:002015-01-16T03:00:24.868-05:00The Sublime Mysteries of BelugitudeI am working on a blog and possible video series (the video part is probably a lie) about my adventures with my boss Anna. It is called Belugaville because I like to pretend that Anna and I are beluga whales. I mostly just wanted to make blogs and videos about it because Anna and I are so adorable and have so much fun, but I was also hoping it could have an educational component so people could see that having a disability doesn't prevent you from kicking back and eating some scrambled eggs.<br />
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(A drawing of a floating beluga feeding eggs to a beluga in a wheelchair.)<br />
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Anyway, I wrote a long and extremely verbose description of Anna's disabilities and my disabilities, which I'm sure would just serve to distract people from how adorable our blog is going to be, so I'm posting it here in case people who love words think it is interesting.<br />
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ANNA'S DISABILITIES</div>
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<span style="text-align: center;">(A photo of Anna sitting on the couch and looking very solemnly at the Christmas tree.)</span><br />
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Anna has a rare developmental disability called Aicardi Syndrome. People ask what her disability is and then are surprised when it doesn't answer their questions, but this shouldn't really be surprising. Even if someone has a common disability like Down Syndrome or autism, the label doesn't tell you much.</div>
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I don't mean this in a politically correct way like disabilities don't matter, but most developmental disabilities affect a lot of things, so it's more like someone has a lot of different disabilities instead of just one, and all the disabilities could be at different levels of severity. I think it's easier to just talk about what a person needs help with.</div>
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"What does Anna need help with?" Anna needs help with eating, walking, and most other physical tasks. You could also say that she needs help making decisions, but it's more that she is not able to communicate what she wants very easily. She can't talk, write, or use sign language.</div>
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You can learn a lot about a person by watching their expressions and what they do, but this is a little different with Anna. She often gets stuck and takes a long time to move somewhere she wants to go, or grab something she wants. I think she also is very much in the present and is focused on holding and looking at things instead of using movement to communicate an idea. In other ways, she can be detached from the present--she sometimes looks serious while something is happening, but smiles and laughs when the event is mentioned later, giving the impression that she really liked it. So it's hard to figure out what Anna likes, even by watching her expressions and behavior.</div>
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One of the very confusing things about Anna is that she sends mixed signals. For example, she always pushes food away at first, but if you make her eat a bite, she might like it. When she likes it, she sometimes grabs your hand and brings the food to her mouth. But other times, she continues pushing her favorite foods away even though she is smiling, and if you make her eat more of them, she laughs and dances. I think Anna is kind of a troll sometimes. If she looks serious, clamps her mouth shut, and pushes the food away really hard, then we know that she truly doesn't want it.</div>
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This means that Anna's parents and assistants have to play a guessing game to figure out what she wants. We have to pay attention to her behavior, but also realize that her behavior doesn't always tell the whole story. We have to remember what she liked and didn't like in the past, so we can guess what she might like in the future.</div>
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What isn't clear in my description is that Anna has a very big personality and strong preferences, even though she is hard to understand. That is one of the sublime mysteries of belugitude. We do know a lot about her. Her favorite foods are yellow curry, guacamole, grilled cheese, and scrambled eggs. She likes music, dancing, parties, applause, and restaurants. She likes going out, but loves coming home and curling up on the couch or in her tent bed.</div>
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Anna sleeps in a tent because she has seizures, which I forgot to mention. When she was growing up, she used to have a lot more seizures and she could have them at any time. She had to wear a helmet everywhere and she didn't like that. When she was a teenager, she had so many seizures that she stopped being able to walk by herself and started having more trouble with a lot of things.</div>
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When Anna got older, she stopped having as many seizures. They also started to only happen when she was sleeping, which is great because she can't hit her head on anything in the tent or on the couch. She is happy that she doesn't have to wear a helmet anymore. After Anna finished school and didn't have to get up in the morning, it turned out that she likes to sleep until early afternoon. Now that she's able to sleep as much as she wants, she has even fewer seizures. I didn't know Anna when she was having so many seizures, but her parents say that she walks better now and is more clear headed and energetic.</div>
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Objectively, Anna still has a lot of seizures; she has a few a week. She takes a lot of seizure medications and she has a magnet in her chest that sends electricity to her brain to try and control the seizures, so she is basically a cyborg. One of the biggest problems for Anna is that when she has a seizure, she can't fall back to sleep for a day or two. She ends up having a hard time because she is so tired. We usually stick to our usual routine as much as possible, even though she can't participate as much when she is tired.</div>
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We do a lot of things. We go to a group for people with disabilities who are learning to use communication devices; we go swimming; and we go to drama classes for disabled people that are offered by the City College of San Francisco. We hang out with Anna's friends and their assistants, with Anna's parents, or by ourselves. Last year we went twice to the Frozen Sing-Along at the Castro Theater and Anna was very excited by the scenes with the trolls, probably because she is always trolling and could relate to them. We also went on Anna's favorite public access TV show, Dance Party, which is just what it sounds like. Anna also likes to spend time in her neighborhood, visiting her favorite stores and being greeted by her adoring public.</div>
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People ask if Anna can understand what they're saying, and if she understands what's going on. It's probably clear by now that we don't really know the answer to that. In special education, it's considered best practice to make "the least dangerous assumption." An example of a dangerous assumption would be if we all decided that Anna couldn't understand anything, so we just didn't talk to her at all, and we talked about scary and upsetting things in front of her without considering how she would feel about it.</div>
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This is done to a lot of people who can't talk. Sometimes, people start talking or typing when they're older and they reveal how horrible it was when people treated them like they weren't there. Even if Anna doesn't understand anything, she still probably wants people to pay attention to her and interact with her. But I don't think that's true; I think she understands a lot.</div>
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I don't know if it is like this, but I usually assume that Anna can understand things as much as I can when I'm drunk. So I assume that she might enjoy hearing about things but she might miss some of the details, or sometimes she might be tuned out and thinking about something else, which is fine. I love talking, so I just ramble to her about everything I can think of. Poor Anna.</div>
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AMANDA'S DISABILITIES</div>
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(A photo of Amanda sitting with a beagle standing on her lap.)</div>
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I have a very common disability, autism. Before I worked for Anna, I rarely told anyone I worked for that I'm Autistic. A lot of people stereotype Autistic people as being violent or self-centered, so I knew it would make it harder for me to get and keep a job. This is especially true because I'm not in a stereotypically Autistic line of work, like computer programming. And since I work with quote unquote "vulnerable populations," being perceived as violent, or even selfish, would be even more of a problem than in other jobs.</div>
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Since I was hiding my disability, I had two consistent problems in all my jobs:</div>
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1. I couldn't get accommodations or ask for help with anything, and I couldn't even explain why I made mistakes without revealing my disability, so I had to hide them or lie about what happened.</div>
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2. I couldn't let my employers or coworkers get to know me. I get stressed very easily, so I don't do very much compared to most people. I don't go on trips or go to parties very much, even though I like them, and I do most of my socializing on the Internet. Without an explanation, my lifestyle can seem strange since I don't have kids or a lot of other responsibilities. Also, most of my best friends are disabled and a lot of them are involved in disability rights; this is a part of my life that is also hard to talk about if I can't say I am disabled. Obviously, it made it harder to do my job when I had to stay detached from other people. It's hard for anyone to work with strangers, and I'm especially shy with strangers.</div>
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When Anna's parents had interviewed me to work for her, they researched me and found my blog about disability. I was really scared when they told me that, but reading my blog made them want to hire me. I had written a lot about my previous jobs and how I didn't want to boss around my clients or ignore them, which I felt pressured to do in those jobs.</div>
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Even though I talked about being Autistic on my blog, I couldn't believe that Anna's parents really knew I was Autistic, because they didn't seem to worry about it at all. Eventually I realized that they did know. We all spend a lot of time together so now I am very comfortable with them and tell them everything. I'm not very professional, but I find it hard to communicate with people who are not my friends and family, so I'm glad that Anna and her parents feel like both of those things to me.</div>
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I have been working for Anna for two years and plan to stay with her forever. Even though Anna is the best person ever, her parents are the ones who make this the best job ever because they accept and support me. I rarely feel scared to explain problems to them and I always have time and space to do it.</div>
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Sometimes people are confused by my lack of ambition. People who only know me on a superficial level don't understand why other jobs have always slowly fallen apart for me. I can't keep it going in the long term if I can't get any help and can't form connections with people. Also, I have some times when I'm not doing great mentally. Working with Anna is not just fun, it's also predictable enough that I can still do my job when I'm not firing on all cylinders.</div>
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I need help with a lot of things, like long term plans, making decisions, using the phone, and communicating in general. It might seem weird that I need help communicating, because I can communicate with people I'm close with, and I can communicate about simple things with people I don't know well--like ordering at a restaurant. What I can't do is communicate about complex things with people I don't know well. Actually, it doesn't have to be that complex--if I was ordering at a restaurant and they ran out of something I wanted, or just asked me a question I wasn't expecting, things could get screwed up. I honestly like people a lot, but I hate when waiters and baristas tell jokes or try to be friendly before I finished ordering, because then I can't focus on communicating clearly to them.</div>
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Part of the problem is that my speech can be hard to understand, but I guess the main problems have to do with my ability to make decisions and remember things and react to new information, and also that the way I talk is naturally somewhat idiosyncratic and disjointed. If I know someone better our conversations are longer so there's more time for me to deal with things, and we also have more common knowledge so I don't need to be super precise for them to understand me. I also feel more comfortable and less like I am inconveniencing them because I don't communicate quickly and precisely enough.</div>
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A lot of people who know me would probably think that I communicate very quickly and precisely. In certain contexts and about certain subjects, this is true. In other situations it's not true at all--another of the sublime mysteries of belugitude, I guess. One part is that you can talk a lot without actually saying anything and that is something I excel at. Meanwhile, Anna's dad often has to call and make doctor's appointments for me because it's too hard for me to remember all the relevant information while also speaking clearly, and I tend to agree with anything that's suggested to me in order to keep from stalling the conversation. It's especially hard on the phone because if I am thinking too long, they might hang up.</div>
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Anyway, that is what's wrong with Anna and me, pretty much.</div>
Amanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.com3tag:blogger.com,1999:blog-8466691337834051176.post-2525907482932906372014-12-04T23:38:00.000-05:002014-12-04T23:50:22.594-05:00content warning for violence and racism<div class="p1">
I don't expect this to change anyone's mind, because it is seeming to me that a lot of my fellow white people just don't care and refuse to acknowledge when an innocent black person is murdered by a white person for no reason. This isn't going to be a very good or original piece of writing, but I don't want to be silent about this either.<br />
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Mike Brown, Tamir Rice, John Crawford, Eric Garner, Renisha McBride, Trayvon Martin, and all the other black people who have been killed this way in recent months and recent years, were innocent people who did not deserve to die. The people who killed them were wrong and racist, as were people who defended their killers and the people who, in most of these cases, have allowed the killers to go completely unpunished.</div>
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Of course no human being is completely innocent. No one is an angel. This doesn't mean anyone deserves to die for being a normal imperfect human being, and attempting to "tell the other side of the story" by talking about the victim's drinking, supposed petty crimes, or social media posts is hateful. When people tried to defend George Zimmerman by showing that Trayvon swore and talked about sex on Twitter, all they did was reiterate how horrible Zimmerman's crime was by showing the average and infinitely complex young person whose life he cut off for no reason. Yes, Trayvon was "no angel," but only in the sense that he was a regular kid.</div>
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After Mike Brown was killed, the Ferguson police department went around looking for something that would make him look like a criminal. They have successfully convinced many people that Mike stole cigars from a convenience store prior to his death, and that he can be seen on video physically harassing an employee at the store. First of all, this wouldn't excuse his murder and it can't possibly have been the motivation for Darren Wilson to kill him, since Wilson could not have known about it at the time. But it is also unbelievable that Mike even did this. There is a video of Mike buying the cigars he supposedly stole and the store owner does not think that the person in the surveillance camera video is Mike. (There are sources for this in item 3 of <a href="http://rosethomass.tumblr.com/post/103604034509">this helpful master post about Ferguson</a>.)</div>
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The situation with Mike Brown's "robbery" is very telling. It shows how if powerful people want to cover up a crime, they can find a way to make the victim look bad and they can make the public believe it. Not only are some white people already biased against black men, but when authority figures show the surveillance video and say it is Mike Brown, it can be hard to question them. It was hard for me to believe that the police were this dishonest in their attempts to protect a murderer--but they really were. The "robbery" brings home that any victim could be portrayed this way. Even if there existed a human being who was impossibly morally perfect, that wouldn't protect their reputation if they were a black person murdered by a cop. The facts could be twisted to convince the public that they were a bad person and somehow frightened their murderer into killing them.</div>
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Some of these victims had done illegal things in their lives; some had not; some were big and strong; and some were people who couldn't possibly have been physically threatening, like Renisha McBride who had just been injured in a car accident. But not only can some of these details be misrepresented, they are not relevant. What these black murder victims have in common is that they didn't deserve what was done to them and their killers should have been unequivocally condemned by public opinion and the law. The fact is that over and over, their killers have been excused.</div>
Amanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.com1tag:blogger.com,1999:blog-8466691337834051176.post-85776829016787102602014-11-02T01:57:00.000-04:002014-11-02T11:23:44.386-05:00BreakupversaryIt's <a href="http://autisticsspeakingday.blogspot.com/">Autistics Speaking Day</a>. I think I only completed an ASDay post on the first year, 2010, and since I don't blog very often, I'm not sure if I would have decided to write one this year. As it turns out, I didn't even remember November 1 was Autistics Speaking Day, even though I've been watching November 1 coming for quite a while. That's because November 1, 2013, was the day I stopped being in an abusive relationship.<br />
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That was your trigger warning. I'm not sure if this counts as an ASDay post or not. It's aimed at Autistic people, disabled people, and to some extent, anyone who is part of a marginalized group and sees that as an important part of their identity.<br />
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I have written about my abusive relationship, and I have more to say in the future. What I have to say today is: I didn't know that an abusive relationship could feel the way mine did. I generally didn't feel scared of my abuser or like I was being hurt; instead, from the beginning of the relationship, I was afraid that I was abusing and hurting <i>her</i>. I saw her as a very weak, vulnerable person who I was obligated to protect, and even when I was really unhappy and wanted out, I didn't see it that way. I saw myself as being stressed because my girlfriend needed more help than I could consistently provide. Or, towards the end, I thought that I just was too disabled, or too selfish, or not disciplined enough, to do everything she needed.<br />
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It wasn't until after the relationship ended that I became afraid of her. When we were together, my perception of the world was so absorbed into hers that I didn't realize how little control I had over my choices, how afraid I was of displeasing her, and how little she cared about my well-being. It's pretty scary that her thoughts and opinions became mine, that even disagreeing with her in my head was really difficult; but naturally, I wasn't scared at the time, because I didn't have enough control over my mind to be scared.<br />
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A few times I cried uncontrollably for hours; I felt hopeless; I got sick. But I always traced it to sources other than my relationship. The closest I ever got was thinking that really bad things happened because I didn't respond to her the right way, and if I just did it better next time, things would be okay. I could handle her.<br />
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To be clear, my ex was also Autistic, and had various other disabilities. Her disabilities played a major role in why I stayed with her and was afraid to question the nature of our relationship. At the time, I had a few rationalizations for it:<br />
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<ol>
<li>It would be wrong to think that she might be exaggerating or lying about certain needs, or using her disabilities as an excuse for her behavior--even though that was clearly happening sometimes, I refused to consider it.</li>
<li>I should be loyal to her because she was disabled. It was right for me to stay with her and help her because disabled people should look out for each other.</li>
<li>If I didn't stay with her, she would be alone because other people didn't understand her disabilities and discriminated against her. She wouldn't get the help she needed, and she might even die. A few times she told me that because I had upset her, she might get institutionalized and they would kill her.</li>
</ol>
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As comforting as it might be to imagine that she was faking or lying about her disabilities, that the person who did this to me wasn't Autistic--well, I knew her well enough to know she definitely is Autistic. I also know that it doesn't matter, that if she wasn't really Autistic, or wasn't really disabled, that wouldn't make this any better.<br />
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This is a friendly reminder that marginalized people can be abusive or dangerous just like everyone else; and that some social justice ideas are right most of the time, but have exceptions. You don't have to always agree with someone just because they are marginalized. If someone is obviously lying, you shouldn't just accept it because they are marginalized. Disabled people aren't usually lying about their disabilities or using them as an excuse, but it does happen, and you don't have to put up with it if it's hurting you.<br />
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Maybe most importantly, not everyone who shares an experience with you is trustworthy. Making Autistic friends was very important to me and I'm now at a point where most of my close friends are Autistic. That does not mean all Autistic people are my friends or have my back, or that I should have their back. This sounds obvious, but it's a lesson I've had to learn a few times, and I hope (maybe unrealistically) that I'll never have to learn it again.<br />
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These are some links I find helpful.<br />
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<a href="http://pervocracy.blogspot.com/2011/07/why-does-she-stay-with-that-jerk.html">The Pervocracy--"Why does she stay with that jerk?"</a><br />
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<a href="http://www.safehavenshelter.org/myths-about-abusers/">Myths About Abusers</a><br />
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<a href="http://kqcrazytrain.wordpress.com/">Off the Rails</a> by Abbey Wilson--particularly the "Why I Don't Believe in God" series--<a href="http://kumquatwriter.wordpress.com/2011/08/23/why-i-dont-believe-in-god-part-1/">one</a>, <a href="http://kumquatwriter.wordpress.com/2011/08/28/why-i-dont-believe-in-god-part-2/">two</a>, <a href="http://kumquatwriter.wordpress.com/2011/09/07/why-i-dont-believe-in-god-part-3/">three</a>, <a href="http://kumquatwriter.wordpress.com/2011/09/14/why-i-dont-believe-in-god-part-4/">four</a>, <a href="http://kqcrazytrain.wordpress.com/2011/10/12/why-i-dont-believe-in-god-part-5/">five</a>. Additional warning, this is about being in a cult as well as an abusive relationship. It's very different from my experience but for whatever reason, it was the first thing I read that I related to.<br />
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<a href="https://medium.com/the-nib/trigger-warning-breakfast-c6cdeec070e6">Trigger Warning: Breakfast</a><br />
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I like the writing of Lundy Bancroft (like <a href="http://redflagarchives.tumblr.com/post/101515624542/myth-4-he-holds-his-feelings-in-too-much-and">this</a> for example, and that whole tumblr has a lot of good stuff), but the big warning is that he basically doesn't believe women can abuse men. This is ridiculous and makes me uncomfortable.<br />
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Also, if you are in my situation, there might come a point when you should take a break from reading and writing about abuse, even if you think it's a good thing to do. It can upset you and make you paranoid; at least, it can for me. When that happens I make an effort to focus on other subjects for a while.Amanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.com0tag:blogger.com,1999:blog-8466691337834051176.post-10140298260200017752014-08-22T02:54:00.000-04:002014-08-22T02:55:52.262-04:00A fun experiment!Imagine a rich, successful executive has a personal assistant. His personal assistant is knocking at the door in the morning and he finally gets ready and comes down. The assistant says, "What took you so long? I want to go shopping."<br />
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The executive says, "That's not what I was planning to do today."<br />
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The assistant says, "Well, I need to go shopping and I haven't done it in a long time. Come on, it'll be fun." She proceeds to bring him along with her as she goes shopping, does all her errands, and hangs out with her friends. What's in it for him is that he gets a chance to get some coffee or something.<br />
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If this seems weird and confusing, instead imagine that a disabled person has a personal assistant who is behaving this way. I don't have to imagine because I know lots of PAs who do this. It is jacked up, but completely socially acceptable. Why?<br />
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I'm guessing because the client is not able to use words to tell them to stop, or is easily convinced to be agreeable and not express their real preferences, or because if they do complain, the PA can just say, "That person just isn't patient or empathetic to my needs because of their disability," or, "That person is just confused and being contrary because they have dementia." AND, because clients are often not able to fire their PA, or at least can't do so immediately/directly. (For example they might be able to tell the agency providing them services that they don't like this PA, but if they need help eating, it would take a lot to just tell someone, "Okay, you're fired," in the middle of dinner. Especially if someone needs a PA with them at all times, that makes it hard to stand up to someone. Or someone might think, "Well, this is kind of annoying, but it could be a lot worse. I might not find someone else who is friendly and knows how to handle all my medical needs.")<br />
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I just think it sucks, a lot, that some PAs think they can just schedule their client's life around whatever they want to do. Even if someone can't communicate very much and you have to guess what they want to do, you should still do that, not just pretend that you think your blind client wants to go to a silent movie with you or whatever. You are doing a job. You are getting paid. If you want to do whatever you want all the time, then don't have a job, because that is not what a job is, and in no other job is it so acceptable to railroad over the preferences of the person who should be your boss.Amanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.com12tag:blogger.com,1999:blog-8466691337834051176.post-40374986466415050772014-07-22T03:18:00.000-04:002014-07-22T12:48:08.500-04:00Why I Published A Picture of a 24-Year-Old Looking Bored With a Stuffed Dragon<div class="p1">
Like many people, I recently saw a picture of a disabled teenage boy in his underwear. I'm not going to post the picture since I don't find it appropriate or appealing to distribute near-naked pictures of minors. If you don't know about the picture, it was the main picture on an NPR article about the boy's parents and their experiences taking care of him. Now you have enough information to find this picture--and what 16-year-old wouldn't be thrilled if the entire Internet community could find a picture like this of them?</div>
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It's true that most 16-year-olds wouldn't like it at all, but almost no one considers your perspective if you have a severe disability. When disabled people complained about the picture, NPR ran another piece defending their decision and a bunch of non-disabled people made comments about how beautiful and important and meaningful the picture was. All these people--the author of the new piece, the photographer, and most of the commenters--failed to comprehend any of the complaints that had been made. It is amazing how much people just refuse to hear information that has to do with disabled people having a perspective.</div>
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To hear them talk, the only people who had problems with the picture were just weenies who were shocked to see an image that refers to personal care. The commenters especially seemed to feel that they were crusading for great justice, shutting down a bunch of Cloudcuckoolanders who want to remain unaware of the fact that some people need this kind of care and it can take a physical toll on their family members. The popular phrase was, "When I look at the picture I don't see all the stuff you're complaining about, I just see LOVE."</div>
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Most importantly, this is bullheaded ignorance of the fact that a)disabled people have opinions, b)most people would not like a picture like this to be distributed of themselves so it's a double standard, and c)no reference was ever made to the boy, Justin, being asked his opinion, nor whether he was able to give his opinion.</div>
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But on another note, I'd like to put forth <i>my</i> disabled opinion that this simply isn't a very good picture and that it represents neither love nor the real experience of caring for a severely disabled person. I'm not a parent, nor do I expect to ever be able to be one because of my disability; but my job is taking care of a severely disabled person, who I happen to love. My job involves personal care sometimes (how shocking), but also endless attempts to take good pictures of Anna. She doesn't care about pictures, but her dad is a photographer, her mom is an artist, and I am a member of the Selfie Generation, so we feel compelled to document every adorable and interesting thing that Anna does. Since Anna is quite adorable and interesting, she has to contend with this kind of thing pretty often.</div>
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Here are some of my pictures that I consider bad:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh47EcAuw_rLIHYo4MoKUU6cY6o1X7Gm4AAX7cuDCTTkBjJXPZ-ynnvxtmx_EUUMxWeWL6jhnMnO6-a3J99orKJn_C3O04McWziUb6ZqKisJGT_42DsgPNAdXKvUX0HCw1SwPjO6Zlmf83s/s1600/Screen+shot+2014-07-21+at+11.45.05+PM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh47EcAuw_rLIHYo4MoKUU6cY6o1X7Gm4AAX7cuDCTTkBjJXPZ-ynnvxtmx_EUUMxWeWL6jhnMnO6-a3J99orKJn_C3O04McWziUb6ZqKisJGT_42DsgPNAdXKvUX0HCw1SwPjO6Zlmf83s/s1600/Screen+shot+2014-07-21+at+11.45.05+PM.png" height="220" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPamEfVU2xg37c5lrhxYi_DCHvD903k5F2DLHbt9uVXxHtXYDzYSz6ag70-V9mXUR0_nzIP2GYCWRZ7kRSENGkiTLzztpnC-LYKFjaGEkQSfLH7M3H591dirpdWidIa2J1O56VuxHSwlnb/s1600/image+(43).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPamEfVU2xg37c5lrhxYi_DCHvD903k5F2DLHbt9uVXxHtXYDzYSz6ag70-V9mXUR0_nzIP2GYCWRZ7kRSENGkiTLzztpnC-LYKFjaGEkQSfLH7M3H591dirpdWidIa2J1O56VuxHSwlnb/s1600/image+(43).jpg" height="240" width="320" /></a></div>
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I consider them bad because they don't do what a picture should do--show who a person is. In the first picture, Anna is not looking at the camera and her face isn't visible. In the second picture, she is visible, but she is tired or lost in thought, so her personality is not portrayed in the picture. Actually it's not a great example of a really bad picture, because she sort of has an expression. The point is that in many candid pictures of Anna, she looks very blank and much more like a stereotype of a severely disabled person than she does in real life.</div>
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Here are some pictures I'm proud of, because they show Anna's personality.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaKRypBlNs9_wQUuetO5nvUWxcL01m7P9z6lNqjAQTeKu5Yagg49PvJ06Q10Tbhly3Ig2UOFKo05NS4pAHofZf9W3cAIX5HQxc6ogjSoQUCR64vQnNfpjo9vNlaJ9uN5zBa9tZP91nkyiV/s1600/image+(41).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaKRypBlNs9_wQUuetO5nvUWxcL01m7P9z6lNqjAQTeKu5Yagg49PvJ06Q10Tbhly3Ig2UOFKo05NS4pAHofZf9W3cAIX5HQxc6ogjSoQUCR64vQnNfpjo9vNlaJ9uN5zBa9tZP91nkyiV/s1600/image+(41).jpg" height="240" width="320" /></a> </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWsTWDplJs1IFNEV9er5U-7Pw5lafz9Nh9NhHcz7BKBIeZ4M78O0c-IdIRbhjjS710kXZwrIgZI_YesannPG8fPEM8QE1kXsbgP77Q5bgQkQnC8TtRxZ9pIZMY6vVHhbpAlM_bQHxyUayP/s1600/image+(42).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWsTWDplJs1IFNEV9er5U-7Pw5lafz9Nh9NhHcz7BKBIeZ4M78O0c-IdIRbhjjS710kXZwrIgZI_YesannPG8fPEM8QE1kXsbgP77Q5bgQkQnC8TtRxZ9pIZMY6vVHhbpAlM_bQHxyUayP/s1600/image+(42).jpg" height="300" width="400" /></a></div>
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I'm not a very good photographer, but I can sometimes get accurate pictures of Anna just by choosing the right time and talking to her while I'm taking the picture so she is interacting with me instead of hiding from the camera. Or I might take a picture of her while she is doing something she really likes to do or interacting with someone else. This seems pretty obvious, yet Andrew Nixon of NPR did not seem to think doing this was important. If you cut out the "shocking" part of the picture (that the boy is almost naked and his dad is carrying him) this is the supposedly loving image that you get.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXCj6x_5l4Yk6wWRDbZEw2-msQjX2rc3EeT9aIr2AucaD-lxOtKtctDipSgSBuMQvk40Xb4Q4y8ScymiRywfYGghQEJ7sGX4M6emG891pPugfV9Qz95-OL0EO3rgdk5XLT2ZZwFocU0oGx/s1600/Screen+shot+2014-07-21+at+7.05.08+PM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXCj6x_5l4Yk6wWRDbZEw2-msQjX2rc3EeT9aIr2AucaD-lxOtKtctDipSgSBuMQvk40Xb4Q4y8ScymiRywfYGghQEJ7sGX4M6emG891pPugfV9Qz95-OL0EO3rgdk5XLT2ZZwFocU0oGx/s1600/Screen+shot+2014-07-21+at+7.05.08+PM.png" height="166" width="320" /></a></div>
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I feel he could have taken a better picture of the dad too, but the most obvious problem is that you can't see the son's face. He might be smiling back at his dad, but you really can't tell because of the angle, and you have to work hard to even guess what his expression might be. I don't see the love or realism in this picture because I can't see the connection and interaction between the father and son. Some people think that taking care of a severely disabled person is just a heroic task where you cart around someone who doesn't even know you're there, but that's not reality. It's not unrequited love.<br />
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Andrew Nixon took a picture of two people, and failed to take it from an angle that included both of the people in the picture. Without the "shocking" parts, it's obviously a bad picture. Rather than people not liking the picture because it's too shocking, it seems to me that people who like this picture like it <i>only</i> because they find it shocking.</div>
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The article includes another picture, where Justin is getting physical therapy. No one has much of an expression, and Justin especially almost looks like he is asleep. I don't really mind this one too much though, since it was not used to illustrate the article and everyone is fully clothed. Finally, at the end of the article,<span style="text-align: center;"> is an actually good picture of Justin. It looks to me like someone who Justin actually relates to (i.e., not the photographer who obviously doesn't know how to interact with him) has stepped in between him and Nixon.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgozUZglvH-p0usXFoKwQCHVquZNfILUMwK31jZI_4gyJvAtMwmmGEea4XaK3WXjU4xuUzdlnheQHyOqF9CrR5p90CdNDbKCek3d8z7QgfInGhDRSBhyphenhypheniqWyk-N_dWLqfyzQRCplcodCfRP/s1600/img_1914-edit_custom-0fea05c2a19be309b95b23e65710006c260ae894-s40-c85.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgozUZglvH-p0usXFoKwQCHVquZNfILUMwK31jZI_4gyJvAtMwmmGEea4XaK3WXjU4xuUzdlnheQHyOqF9CrR5p90CdNDbKCek3d8z7QgfInGhDRSBhyphenhypheniqWyk-N_dWLqfyzQRCplcodCfRP/s1600/img_1914-edit_custom-0fea05c2a19be309b95b23e65710006c260ae894-s40-c85.jpg" height="212" width="320" /></a></div>
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Justin is at his birthday party, and clearly interested in what's going on. I think he's not looking at his cupcake as you might expect, but at a person he likes. Anna's dad also thought this was the best picture in the article and should have been highlighted because, "he's with it; he's paying attention."</div>
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There were a few comments on the article from people who thought Justin had, and I quote, "no cognition" and therefore his life was meaningless. His mother contacted some commenters to explain that of course he has cognition, which I am glad she did. But she could have done something better if she had demanded better pictures to be used in the article than ones that did not show Justin's face, or where he looked blank, which play right into the idea that severely disabled people don't think and disabled people in general don't have perspectives.</div>
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I'm not saying it is the parents' or Andrew Nixon's fault that people make those kind of assumptions about someone with severe disabilities, but they all could have fought against those assumptions by making an effort to include better pictures of Justin that portray his personality and inner life. Apparently none of them realized why it was important to do this, and they unintentionally advanced the idea that what's important about severely disabled people is the physical support they need, and not that they have personalities like everyone else.</div>
Amanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.com0tag:blogger.com,1999:blog-8466691337834051176.post-19702256454244450302014-07-03T20:59:00.003-04:002014-07-03T21:17:16.920-04:00Round and round in my bed life<div class="p1">
My life is pretty great. Let's talk about it. Okay, it's not the greatest life ever, but there are certain times of the day when I feel really satisfied. Last night I remember taking out my contacts, throwing them away, and reaching for my glasses; and feeling pleasantly surprised at how easy it was to do this. I used to take three hours to get ready in the morning and now I can take less than one hour--and that's not racing against the clock and working super hard to focus on what I'm doing. I don't even use timers right now.</div>
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Around the beginning of last year, the idea developed that I could try to make my activities of daily living easier. I'd give most of the credit to the family I work for. First of all, my job is so easy and fun that I can focus on things besides hating my life and being afraid of getting fired. Second of all, Anna's parents are really organized. Of course I've met organized people before, but I was never in the right frame of mind to notice and appreciate it. This time around, I was.</div>
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If I'm looking for pillowcases or paper towels or stacking cups or shoes, I always know where to find them in Anna's house. Each pair of shoes even always goes in the same compartment in the thing that holds the shoes. Her long-sleeved and short-sleeved shirts are in different places, and the long-sleeved shirts are divided into patterned and not. Her hoodies are organized in such a way that you can identify them without unfolding them. And a lot of things are labeled.</div>
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This makes everything more predictable, which is great. I decided that I wanted my living space to be like this, but even more so. Since I run into problems when I have to make decisions, I decided that I would do exactly the same things in exactly the same place when I was doing activities of daily living like getting dressed, putting on makeup, or putting in my contacts. Over the first year that I was trying to make things easier, I realized that reducing the number of steps was even more important than making things predictable. I decided to set things up so that I barely had to move to get ready in the morning and get ready for bed at night. By the way, this might not make sense if you don't read my <a href="http://adeepercountry.blogspot.com/2014/03/mushballing.html">mush post</a> first.</div>
<div class="p2">
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<div class="p1">
Right now my schedule is like this:</div>
<div class="p2">
<br /></div>
<div class="p1">
I wake up in the morning (usually before my alarm). I reach for my phone to see what time it is, and open my computer, which is on a large table next to my bed. I might check tumblr or something, and if I'm thirsty I drink some of the seltzer that I always have in my room. I have a recycling bin next to the bed for all my cans of seltzer. If I'm hungry, I drink a bottle of Ensure or eat a corn tortilla or some crackers, all of which I can reach from my bed. Then I start up whatever TV show I'm watching right now. I put in my contacts. I throw the contact boxes away in the container I use as a trash can. Then I reach for my backpack, which is at the end of my bed, and take out the Ziploc bag in the left corner pocket, which has all my makeup in it. I sit on my bed and watch TV as I put my makeup on. Then I put the Ziploc bag back in my backpack so I'll have makeup if I need it during the day.</div>
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<div class="p1">
My bed has bars which means I can hang a lot of stuff on it. I usually have some clothes hanging on the end of the bed--all the clothes that have been worn at least once, but are okay to wear again (shirts and leggings=two days, pants=three days, skirts and hoodies=until I do laundry). The other clothes are in my cubbies, which are next to my bed. I have everything folded so I can see what it is. I can just look at all the clothes and decide which ones to wear, and I can even reach my desired articles of clothing without getting out of bed, even though I might have to move to the edge of the bed to do it.</div>
<div class="p2">
<br /></div>
<div class="p1">
I don't brush my hair so I am now ready to go. I pack my phone and my computer if I want it, turn off my power strip, and go to the other side of my room where my shoes are. I put on my shoes. Then I go in the bathroom, brush my teeth, and leave.</div>
<div class="p2">
<br /></div>
<div class="p1">
When I get home at night I usually just want to get in bed. If I have something to do in the house, like put my frozen vegetables in the refrigerator or take out the trash, I look at my watch and promise myself it will take less than fifteen minutes. After that I go in the bathroom, brush my teeth, and wash my face. When I get in my room I put down my backpack, turn on the power strip, turn on my lamp, change into pajamas, do my *~Skincare Regimen~*, take out my contacts, and put on my glasses.</div>
<div class="p2">
<br /></div>
<div class="p1">
Bear in mind it's often like eight o'clock at this point, and I might not turn out the light and go to sleep until midnight. But I've pretty much always fallen into bed and mushed out as soon as I've gotten home. The difference is that for a long time I didn't accept that I would do this, so I would lie down with my clothes on and then spend the next few hours trying to get out of bed to brush my teeth and wash my face. Obviously my mouth was 90% cavities and my skin condition was out of control to the point that I didn't want to wash it even when I had the chance, because touching my skin hurt so much. Now things are a lot better! Having a face that doesn't hurt is probably my favorite thing about life right now.</div>
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<div class="p1">
Aside from changing the way I do stuff at home, the most important ADL decision I've made was about what <i>not</i> to do at home, i.e. cooking and eating. This was a hard decision to come to because I grew up thinking of cooking as something that is part of being independent. My parents had enough money to go out to eat a lot, so we did, but they would cook at home a lot too. I felt proud when I learned to cook some simple meals by myself. Over the first two years after college, I made my own meals the majority of the time and was slowly learning to make more and more things. I didn't make anything complicated, but I enjoyed the food I made.</div>
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<br /></div>
<div class="p1">
But even though this sounds like a nice progression to independence, I realized that it wasn't benefiting me. The problem isn't really the time and energy involved in cooking, although that is usually a lot more time and energy from me than it would be from someone else making the same thing. It does take time but it's sort of fun and I guess it often takes me the same amount of time to travel to my favorite diner....where I'm writing this right now!!! I love you Lucky Penny!!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHgitmIgYDksoAjtPeNdKnqQH4EWYhd5bKLczT0RQbXQCfL7EGfvnJUD3MU3BGatjqNE-DaF0gNVFexmMdFwuDyQWlPGkMwCxI19UK5yuEjVcL84tM1O2w0GMcA9lXk_qJ8UWVTINN2M0G/s1600/Photo+on+2014-07-03+at+15.51.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="Photo of me drinking coffee in a diner with very unkempt hair" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHgitmIgYDksoAjtPeNdKnqQH4EWYhd5bKLczT0RQbXQCfL7EGfvnJUD3MU3BGatjqNE-DaF0gNVFexmMdFwuDyQWlPGkMwCxI19UK5yuEjVcL84tM1O2w0GMcA9lXk_qJ8UWVTINN2M0G/s1600/Photo+on+2014-07-03+at+15.51.jpg" height="300" title="" width="400" /></a></div>
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I bet you would never have guessed I don't brush my hair, right.</div>
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<div class="p1">
Anyway, sorry for the derailment but the main problem is actually dishes. I don't think anyone finds dishes fun and easy to do, but for me because eating is a more relaxed, mushy activity, it's really hard to go from eating to doing the dishes. If I eat by myself in my room instead of with roommates, then I get even mushier and end up falling asleep surrounded by an army of dirty dishes.</div>
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<div class="p1">
It is fun to imagine a fantastical universe where some amount of planning or prioritizing could lead me to do all my dishes all the time, but I don't think that is realistic, at least not at this point, and I feel like it's contributed to me being unhappy when I live in a gross, cluttered house full of ants (which happened in the first place I lived after college) or my roommate is always justifiably upset with me for not doing the dishes (which happened in the second place).</div>
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<div class="p1">
It was a major load off my mind when I started going out to eat by myself. I had almost never done this before, and it can feel like a weird thing to do at first, but it's super great. Before I started going out to eat I would often get takeout when I felt like cooking was too hard, but this wasn't a good solution because I still had dishes. When I go out to eat I don't have to focus on anything before eating (getting groceries, cooking, etc.) or cleaning up anything after. There are clear delineations for when the meal starts and ends.</div>
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Even more importantly, it replaces something that was a source of problems with something that makes me really happy. I love going to diners and cafés, not just because I can eat something that would probably be too hard for me to make myself, but because I like the experience of being there. It's similar to riding public transit--since I'm dressed and out of the house I'm pretty alert, but there isn't anything I really need to focus on, so I can use my alertness for whatever I want. I can read, write, and listen to and observe people around me. This is something that makes my life better at any time of the day, but it's especially nice to start the day like that.</div>
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<div class="p1">
In fact, my initial motivation for going to diners and cafés was happiness, not doing the dishes. This was because I had a realization about the Stamford Museum and Nature Center. SM&NC is a place where I spent a lot of time when I was growing up and have a lot of memories of. My parents brought me to lots of classes and events there, we would volunteer at events, and my dad and I led a hike there every fall for about 19 years.</div>
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<div class="p1">
My priorities in adult life have pretty much always been: 1)survival (getting up in the morning, going to work, eating), 2)lofty goals (writing, reading, having meaningful relationships), and 3)short term pleasure (sleeping, mushing out, or anything else that takes no effort to do). But last year I came to the pretty obvious realization that SM&NC wasn't just automatically part of my life--my parents had decided that it would be fun to be involved there. This is why people do things that take effort and don't seem to have an obvious benefit, like going on vacation. It actually is a good feeling to plan and make time and put in effort just to do something fun. It's also a different kind of fun from falling into bed at night or running into Walgreens to buy candy on the way to work. You can enjoy it more if you scheduled the fun.</div>
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<div class="p1">
Obviously, these are just the things that have made me feel better and function better this year, and won't necessarily work or be affordable for other people. But I wanted to explain and share them in case they could give other disabled people some hope about making daily life easier. Seriously, I feel way happier and my face doesn't hurt, and that's quite a thrill.</div>
Amanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.com2tag:blogger.com,1999:blog-8466691337834051176.post-72868164330445047182014-07-02T00:31:00.002-04:002014-07-02T00:41:57.351-04:00Compare and contrastI just realized something weird about my feelings. Actually, I'm guessing this is true of a lot of people and I'm going to write about in the second person, but there's always a possibility I'm just a huge freak.<br />
<br />
Basically, things look better when you are comparing them to something worse. This means that the worse someone is, the more their behavior can impress you.<br />
<br />
For example, if your best friend usually criticizes you and insults everything you say, you will feel so special when he does tell you, "That was really smart." He will seem really nice, and you'll feel like what he said was really meaningful because you waited such a long time to hear it.<br />
<br />
If your boyfriend always hits you when he's mad, it will seem amazing if he gets mad and doesn't hit you. It will seem like he's great for controlling himself, like he's really working hard to treat you well.<br />
<br />
Actually neither of these people is nice! It doesn't have to be this extreme. But the point is you give more credit to people who deserve <i>less</i> credit. Meanwhile, if someone is consistently kind to you, you never get the high of being shocked by an ordinary display of kindness. Their kindness blends into itself and doesn't impress you as much as someone not hitting you 1% of the time.<br />
<br />
I think I first got exposed to this idea in the form of a piece I read about being nostalgic for bad relationships. It was basically about how bad relationships have some really exciting and good moments when your partner stops being awful for a minute and you're so excited about it. Then you end up being nostalgic when you're in a relationship with a good person, because you don't get excited the same way. (If someone could find this piece, I'd love to link to it--I just couldn't find it.)<br />
<br />
This is pretty obvious, I guess, but I was thrilled to notice myself having one of these reactions today because I could self-correct. Here's to prioritizing people who are actually good to you most of the time.Amanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.com0tag:blogger.com,1999:blog-8466691337834051176.post-66957696057353130042014-05-19T20:22:00.001-04:002014-05-19T22:22:42.923-04:00Disabilarchy?I've noticed that some portrayals of the disability experience in fiction are pretty much diametrically opposed to the disability experience in real life.<br />
<br />
In fiction:<br />
<ul>
<li>Employers have no choice but to hire disabled applicants even when they are not qualified, because they could be sued for not hiring a disabled person</li>
<li>Disabled people's work is disproportionately rewarded even when it's bad, because people feel sorry for us or are just positively biased toward us</li>
<li>It's easy and profitable to fake a disability in order to get disability benefits from the government</li>
<li>Professors have to provide ridiculous accommodations for students who say they are disabled, when in fact those students are lazy or not smart enough to be in college</li>
<li>People with mental disabilities are the perpetrators of violent crimes</li>
<li>A "black transgender disabled lesbian" has a big advantage in life because people want to give her jobs and other opportunities</li>
</ul>
<div>
In reality:</div>
<div>
<ul>
<li>Employers often do not want to hire disabled applicants because of their mistaken ideas about what our disability means. It's easy for them to discriminate against us because they can just say "We didn't think you'd be a good fit for the job" or something like that. They also can fire someone for being disabled if they just pretend to fire them for a different reason. Even if an employer admits that they are not hiring someone or firing them because they are disabled, suing someone is expensive.</li>
<li>Some disabled people are legally allowed to be paid a fraction of minimum wage if their employer says they cannot work as fast as a non-disabled person. For example, Goodwill does this, and plenty of people think it is acceptable. (Articles about Goodwill: <a href="http://www.forbes.com/sites/susanadams/2013/07/30/does-goodwill-industries-exploit-disabled-workers/">here</a> and <a href="http://www.forbes.com/sites/susanadams/2013/07/30/does-goodwill-industries-exploit-disabled-workers/">here</a>, and many comments asserting that disabled people are not good enough workers to deserve minimum wage: <a href="http://www.forbes.com/sites/susanadams/2013/07/30/does-goodwill-industries-exploit-disabled-workers/">here</a>, <a href="http://www.forbes.com/sites/susanadams/2013/07/30/does-goodwill-industries-exploit-disabled-workers/">here</a>, and <a href="http://www.forbes.com/sites/susanadams/2013/07/30/does-goodwill-industries-exploit-disabled-workers/">here</a>; and saying that people who need accommodations do not deserve minimum wage, even though accommodations are their legal right: <a href="http://www.forbes.com/sites/susanadams/2013/07/30/does-goodwill-industries-exploit-disabled-workers/">here</a>).</li>
<li>In the US and the UK, it is a lot of work to even apply for disability benefits (more work than some disabled people can do); many disabled people are denied benefits for stupid reasons; and the benefits are not very much. You also then can't save money, or you will lose your benefits.</li>
<li>It's a lot of work to get accommodations in college (again, more work than some disabled people can do; my post about that <a href="http://adeepercountry.blogspot.com/2011/03/disability-services-are-not-accessible.html">here</a>); and even if you do all the work to get accommodations, a professor might refuse to give them to you if they feel like it. This happened to someone I knew whose professor thought it was stupid for her to get a note-taker, so he dragged his feet on arranging it and then tried to arrange it in a way that revealed the disabled student's identity, which he was not allowed to do. Many disabled students in college are struggling due to lack of support, and about half the (smart, hardworking) disabled kids I met in college had to drop out. Still, some people imagine that disabled students are coasting through life on a fluffy cloud of accommodations (<a href="http://www.nytimes.com/1997/04/08/us/fictitious-learning-disabled-student-is-at-center-of-lawsuit-against-college.html">here</a>).</li>
<li>People with mental disabilities are disproportionately the victims of violent crimes and society often makes excuses for the criminals, causing this type of crime to seem more and more acceptable for potential murderers and abusers.</li>
<li>A black transgender disabled lesbian has to deal with racism, transphobia, ableism, homophobia, and sexism; the intersections thereof; and feeling like an outsider even in minority communities. Plus, she's constantly invoked as a joke to show how bad "political correctness" supposedly is.</li>
</ul>
<div>
So, you have to ask: why is being disabled portrayed as being so easy and coming with so many opportunities, when in fact it comes with a lot of disadvantages? Watching TV (and hearing some people talk), you would think that we live in a society ruled by disabled people.</div>
</div>
Amanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.com5tag:blogger.com,1999:blog-8466691337834051176.post-61661936002193094092014-03-09T16:14:00.001-04:002014-03-09T16:16:28.346-04:00MushballingSometimes I try and come up with new frames to explain the decisions I make (or not-so-voluntary things that people think are decisions). Sometimes this is for other people but more often it's just so that I can be okay with myself.<br />
<br />
Today let's talk about being a mushball. I am a mushball.<br />
<br />
If you want to know what a mushball looks like, take a piece of soft bread, squish it into a ball, and get it wet. That is approximately me.<br />
<ul>
<li>droopy</li>
<li>doesn't react to new situations</li>
<li>doesn't like talking</li>
<li>is not up for reading anything difficult or unfamiliar</li>
<li>probably isn't good at writing, either</li>
<li>likes to eat, read simple things, and watch TV, while propped up with pillows so it doesn't have to suffer the indignity of trying to sit up on its own</li>
</ul>
<div>
Actually, if you know me in person this might not be your impression of me! That's because I can usually corral myself if I have to be around people or do tasks that I need to focus on. I'm glad about that because a full-time mushball life would be boring (I also would not be able to have a job or anything), but I still need to return to my natural mushball state or everything gets totally out of control.</div>
<div>
<br /></div>
<div>
Being a non-mushball (like if I am going outside or interacting with anyone in person) kind of feels like being in crisis. It feels like have to tense every muscle in my body so I can be alert and anchored in time and try to respond to everything that is going on. It's not really that bad, but trying to be tense and alert permanently would be the same as trying to stand up forever.</div>
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<br /></div>
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When I've been in situations where I can't mush out for really long periods of time (like when I was working 12-hour shifts with a 4-hour commute) what happens is just that the mushiness spills into everything. Like, usually mushballing happens when I'm by myself in my room, and the rest of the time I'm more or less tensed up. If I don't have any mush time, then I end up being mushy in situations where it's problematic and could even be a danger to me or other people.</div>
<div>
<br /></div>
<div>
So, mush is important is what I'm saying. But not mush is important too. It's depressing and not very satisfying if all I do is lie in bed, eat, and not talk to anyone, but if I stay at home that's probably what is going to happen. It feels like my body hoards mush time and is pulled toward my bed like a magnet, although it probably has more to do with cueing. If there are cues making me feel like this is mush time, then my body/brain aren't going to be ready to tense up.</div>
<div>
<ul>
<li>dressed = non-mush</li>
<li>pajamas = mush</li>
<li>in my room = mush</li>
<li>outside = non-mush</li>
<li>speaking = non-mush</li>
<li>makeup = non-mush</li>
<li>contacts = non-mush</li>
<li>glasses = mush</li>
</ul>
This explains why certain things upset me and make it hard to focus, like talking on the phone in my bedroom or going outside without makeup on. I had a lot of trouble a few years ago because my eyes were being irritated by my contacts and I was supposed to wear glasses all the time, but I just couldn't do anything very well when I was wearing glasses instead of contacts and started having mental health issues because I was so frustrated by my inability to do things.</div>
<div>
<br /></div>
<div>
I feel like a lot of people must feel this way to some extent, because they go to coffee shops to work on the computer or to study. I think it's more extreme for me, because people don't seem to understand some of the aspects of my mush situation, but I like to use coffee shops for the same thing. Something that I'm trying to address these days is how to keep as much mush time as I need, while making sure that I have free time that isn't mush time. I want to have free time when I am alert and can really devote myself to things I'm interested in, instead of just floating. I'm trying to spend some time alone at coffee shops and diners whenever I have a day off.</div>
<div>
<br /></div>
<div>
This brings me to the original subject for my post, which is that I've made a 2014 resolution to never prepare food for myself in my house. If I'm eating with my housemates that's an exception, and so is if I'm not doing well and need to have a full mush day. But otherwise, preparing food at home just leads to me lying in bed, eating super slowly and spacing out, sometimes eating way more than I intended to because I don't want to get up to put the food away, and finally surrounded by a bunch of dishes that I'm too mushy to take care of. It's gross and depresses me.</div>
<div>
<br /></div>
<div>
I wanted to write about my resolution because I always get the message that going out to eat and not preparing your own food is lazy and a waste of money. To me, it isn't laziness because it prevents mushy eating. In the short term, it definitely costs more money--I can't afford to spend more than $14 a day on food and it's hard to keep to this eating out, whereas I could easily spend much less if I was only eating at home. But I feel like it's worth feeling better, and it also has meant that I never get food delivered anymore, which was even more expensive than going out to eat.</div>
<div>
<br /></div>
<div>
Anyway that's all I have to tell you, and now it's time to return to that of which I speak.<br />
<br />
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihlzp1aq8kmXdSzu2lZ38IX-03Hb1q0njkpB2x6_-omj6mguIC5Rk2Ky7IDK_5SCq1ekns7-EJEst1frkMuk0-Z8WU1npdWNhm_ZECA5d5t38p3uiZyuS3lDH1BjPfAI8aqTsYvOwa8t7S/s1600/Mush_Sled_Dogs_of_the_Iditarod.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="a children's book called mush sled dogs of the iditarod" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihlzp1aq8kmXdSzu2lZ38IX-03Hb1q0njkpB2x6_-omj6mguIC5Rk2Ky7IDK_5SCq1ekns7-EJEst1frkMuk0-Z8WU1npdWNhm_ZECA5d5t38p3uiZyuS3lDH1BjPfAI8aqTsYvOwa8t7S/s1600/Mush_Sled_Dogs_of_the_Iditarod.gif" height="320" width="256" /></a></td></tr>
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Amanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.com4tag:blogger.com,1999:blog-8466691337834051176.post-64958608101824364862014-02-02T15:08:00.000-05:002014-09-24T00:42:45.911-04:00///I've been writing about the idea that <a href="http://adeepercountry.blogspot.com/2014/01/confusion-and-forgiveness.html">you can't forgive someone until they're sorry</a>. Obviously, this isn't a rule, it's just something that can be really hard to do and, I think, damaging to require. I was reading some comments on a post about a parent who tried to murder her disabled child; obviously there were endless calls for compassion, and the commenters who wanted to focus on the crime were being told that they should focus on compassion for the criminal instead. To me it's a similar thing.<br />
<br />
The focus on dealing with any kind of abuse or violence cannot be that we should be nicer to the people who commit it. It just can't be.<br />
<br />
That doesn't mean that murderers, rapists, etc. aren't human, or that their behavior may not have partially come from something bad happening to them, or that maybe if someone had been a little nicer to them or made things easier they wouldn't have committed the crime. Those things might be true in some cases but it's not an appropriate thing to focus on and in some contexts, it's downright terrifying.<br />
<br />
It's terrifying because it implies that non-perpetrators should be walking on eggshells in dealing with perpetrators.<br />
<br />
Maybe if people provided more help or compassion to this parent, the parent would not have committed a murder. (There's also the fact, rarely said but undeniable, that if the victim hadn't needed so much help we wouldn't be having this conversation.)<br />
<br />
Maybe if people dressed differently, drank less, or expressed themselves more clearly, someone would not have sexually assaulted them.<br />
<br />
Maybe if people were more nice/open/compassionate to someone, that person would not have behaved abusively.<br />
<br />
No. Wrong. This frames things so what happened is the fault of either the victim, or people who were not involved, instead of the person who actually perpetrated what happened. People do a lot of bad things to each other and the way to address that is not to focus on how other people should be nicer or more understanding to people who do bad things.<br />
<br />
For one thing, if the perpetrator is not sorry and plans to keep doing similar things, then being compassionate just makes it easy for them to keep on doing those things. For another, if there's a big focus on how victims or other people should have behaved differently, then the perpetrator can use those things to get away with their behavior or even to control their victims.<br />
<br />
I'm not against being kind or compassionate to people, even people who have committed violence or abuse, but there's a difference between personally feeling compassionate, and trying to tell other people that they're wrong if they're not compassionate for people who have done bad things. They are not required to be.Amanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.com1tag:blogger.com,1999:blog-8466691337834051176.post-74996674137716487522014-01-25T02:10:00.000-05:002014-01-25T02:10:39.568-05:00Not BoundariesI have been thinking about boundaries a lot and have a bunch of posts stewing. Some of my posts are about having strong boundaries, but today I was thinking about what is not a boundary. I guess I should stop using the word boundaries so much because it's kind of vague--I would define boundaries as things that a person has the right to control.<br />
<br />
For example, a person should be able to control whether they have conversations with strangers. If I try to talk to a stranger on the bus and she keeps ignoring me or she tells me she doesn't want to talk to me, then I should stop talking to her. If I keep trying to talk to her, I'm coming up on violating her boundaries. If I actually become aggressive or try to punish her for not talking to me, then my behavior is seriously wrong and abusive.<br />
<br />
But not every preference is a boundary. Let's say the same stranger not only doesn't want to have conversations on the bus, but doesn't want anyone to have a conversation on the bus. She tells everyone on the bus to stop talking to each other. That's not appropriate, I don't think.<br />
<br />
There's some room for interpretation of what is or isn't a boundary. What if people on the bus are having a very loud conversation that is hateful or sexually explicit? A lot of people would feel it's within their rights to tell them to stop having that conversation in public. Even though there are some gray areas, I think there's usually an answer to the question, "Is this a legitimate boundary?"<br />
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Yesterday I was at a restaurant with two friends. I'm not in a really high-quality fake name headspace, let's call them Alice and Sebastian. After I mentioned how anxious and stressed out I sometimes felt when people would sing loudly in public, the conversation eventually led to Alice and Sebastian both singing loudly in the restaurant. I felt uncomfortable and wished they would stop.<br />
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I don't know what's up with this, because I'm sure I'm totally loud and weird in public sometimes. But I often get really distressed when I'm with someone who is singing loudly, talking in a certain way (like putting on a fake accent), laughing loudly, or just talking really loudly in public. I guess part of me feels scared that people will be upset with them and something bad will happen to them, or that I'll get in trouble for allowing this to happen.<br />
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Because these situations make me so uncomfortable, there have been many times when I demanded that someone stop singing in public and felt like the person was hurting me when they didn't stop. Even last night, I thought of putting my money down on the table and saying, "Okay Alice and Sebastian, you're upsetting me and I'm going to leave." I briefly felt like doing this would just be asserting my boundaries, even though I knew it would upset them too.<br />
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When I thought about it, though, I remembered what I've been thinking about lately--that just because you don't like something doesn't mean it's wrong for someone to do it. There's nothing wrong with being irrationally bothered by stuff, but there is something wrong with expecting other people to always stop things that bother you. There has to be some kind of limit when it comes to accommodation.<br />
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I know that sounds harsh, but things can go really wrong if you don't prioritize logic over emotional reactions. Like, if someone gets suicidal every time someone criticizes her--that sucks for her and it's not her fault, but if people always prioritize that person's feelings, then that means they can't even tell her if she did something really bad to them. She could be driving the wrong way on the highway and the other person in the car would be worrying about making her suicidal by telling her they're about to get in an accident.<br />
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I've been in situations pretty close to this, and it just is no good. Sure, people can't help having mental health problems or reacting to stuff a certain way. That doesn't mean that they should allow those problems to control other people's lives. I've had really positive and really negative relationships with other mentally ill people, and the most negative things have happened when people have not been mindful and responsible about their mental illness.<br />
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I just waited it out with Alice and Sebastian--I was glad that I didn't end up being mean to them for singing, because they should sing if they want. But I also felt dissatisfied with how things had gone, because I had to sit through something that upset me. I thought about it more today and came up with a potential solution of leaving for a while, explaining why I'm leaving, but also being very clear that I don't think they're doing anything wrong and I'm glad they're doing something they like. Obviously this is something that some people would think is just crazy and ridiculous, but I think it could work with a lot of the people I spend time with.Amanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.com7tag:blogger.com,1999:blog-8466691337834051176.post-40084524309924034282014-01-01T22:25:00.015-05:002014-01-25T15:21:15.609-05:00Confusion and forgivenessContent warning for gaslighting type stuff, I guess.<br />
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In November I made a few posts about how I have to be harsh with people sometimes because I have boundary issues and might take on their feelings by accident. I'm not sure I do have boundary issues. What happened is, at the beginning of November I ended my first serious romantic relationship. Over the course of the relationship I had started to feel very confused about things like who I was, what I felt, and how I behaved. I felt like I couldn't clearly remember incidents that had happened between my girlfriend and me and I was constantly straining to understand what was going on.<br />
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There was a possible explanation for this, but I didn't want it to be true. My girlfriend refused to ever apologize or acknowledge doing things that hurt me. If I brought up something I thought was a problem she would either claim she didn't understand, tell me I was confused about what was happening, tell me I was contradicting myself, or bring up something bad I'd supposedly done to her. Along with whatever her response was, she also would get upset and it was awful because I knew it was my fault for criticizing her behavior.<br />
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This was all really disorienting. When something hurt me, I had to either put up with it or risk something worse happening if I talked about it to her. I worked hard to convince myself that she wasn't doing anything wrong. I also worked hard to believe that the things she said made sense even when she was attributing feelings to me that I didn't have or distorting things that had happened. Over time she caused more and more problems for me, but I had to believe it was my fault because otherwise, I would have to admit that my image of my girlfriend as a kind, well-meaning person was completely wrong. It was past the point where she could just be doing all this by accident. There was a long-term pattern of her distracting, punishing, and confusing me out of asking to be treated fairly in our relationship.<br />
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I don't think she set out to do this to me--I think she was desperate for closeness and terrified of criticism. But it was still very wrong and shouldn't have happened.<br />
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When I ended our relationship, I knew that I had to turn off the parts of me that had focused so much on trying to keep my ex from being upset. I had to stop trying to always see her point of view. Instead, I needed to focus on the fact that what she did to me was wrong.<br />
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I might be more likely to identify with other people than the average person, but the degree to which I was identifying with my ex's feelings by the end of our relationship didn't come naturally. I had to be trained into putting her comfort ahead of my needs. I may be suggestible, but I didn't start out as suggestible as I was by the end.<br />
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So, yeah. It's not me, it's you.<br />
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I also wanted to write about forgiveness a little bit. I usually lean toward forgiving people but I think it's important to acknowledge that in some situations, certain kinds of forgiveness aren't possible.<br />
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Let's say Molly's boyfriend, Steve, steals money from her and she forgives him. There are a bunch of different ways this could play out:<br />
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He steals money from her and then apologizes. She forgives him.<br />
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He steals money from her and apologizes. She forgives him. He continues to steal money from her and apologize. She forgives him every time.<br />
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He steals money from her and when she confronts him, he gets mad at her and says she should care more about his problems. She apologizes and gives him as much money as he wants.<br />
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He steals money from her and she is going to confront him. Then at church one day, Molly resolves to be a more forgiving person and decides she will be okay with Steve stealing money from her and she won't confront him about it.<br />
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He regularly steals money from her and she can't stop him from doing it and she resents this. She decides to forgive him and not resent him for stealing her money anymore.<br />
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Molly says Steve is not allowed in her house. She isn't angry at him for what he has done, but she's not willing to deal with him stealing her money.<br />
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So, what most of these situations have in common is that Steve doesn't see his bad behavior as wrong and he plans to continue doing it. I'm not sure that you can really forgive someone like this unless you are doing it from a distance. I feel like trying to be forgiving, compassionate, etc. to someone who is repeatedly hurting you is less about forgiveness and more about accepting that you're getting hurt and trying to have a good attitude about it. I'm not criticizing people who try to have a good attitude about getting hurt but I don't think anyone needs to try to forgive someone who is hurting them.<br />
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I think forgiving someone who is sorry can be a really positive thing. I don't think forgiving someone who isn't sorry is really something that needs to be done. For real forgiveness to happen, the boundaries have to be in place--it has to be acknowledged that there's something to forgive.Amanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.com6tag:blogger.com,1999:blog-8466691337834051176.post-31687799118583163212014-01-01T18:00:00.001-05:002014-01-02T16:07:17.748-05:00Away From Homewarnings: abuse, suicide, supercrippery<br />
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<span class="s1"><i>What is a supercrip?</i></span></div>
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<span class="s1">I use the word supercrip a lot (though not as much as I used to) and it has a very specific meaning for me. For some people, the word supercrip just means a disabled person who is successful or heroic, but usually it has negative implications. Often the term refers to a media stereotype of a disabled person who “overcomes their disability,” especially by playing sports, and becomes an inspiring example for kids who don’t want to do their homework.</span></div>
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<span class="s1">For me, supercrippery isn’t about how other people see me, but how I see and treat myself. My definition of supercrippery has to do with putting a non-disabled picture of success ahead of your own safety and happiness, including placing yourself in physical and mental danger so that you can resemble this picture as much as possible. For example, if you do things slower than average, you might decide to deprive yourself of sleep so you can be as productive as a non-disabled person. Obviously, making this decision requires you to have a lot of self-hatred and to feel that you don’t deserve to have your basic physical needs met because you are impaired.</span></div>
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<span class="s1">I’m doing well now but when I am having more mental health problems supercrippery is a huge part of my life. This post actually isn’t really about supercrippery but I want to explain what it is and tell people that if these ideas are triggering for you or make you really upset, you might not want to read the post. The post is actually going to be about comparing disabled young adults’ life trajectories to each other, but I feel like this kind of ties in to supercrippery because it is usually comparing people to each other based on how well they fit a non-disabled standard of young adulthood.</span></div>
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<span class="s1"><i>Bella and Sandra</i></span></div>
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<span class="s1">You know I love my fake names, so let’s have two disabled girls who go to the same high school. No one’s disability is exactly the same as someone else’s, but Bella and Sandra have many obvious things in common (I choose these particular traits because they make Bella and Sandra easy characters to write):</span></div>
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<li style="font-family: Helvetica; font-size: 12px; margin: 0px;"><span class="s1"><i></i>They both are diagnosed on the autism spectrum</span></li>
<li style="font-family: Helvetica; font-size: 12px; margin: 0px;"><span class="s1"><i></i>At some point they both receive treatment for self-injury, anxiety, and depression</span></li>
<li style="font-family: Helvetica; font-size: 12px; margin: 0px;"><span class="s1"><i></i>Adults who meet them always comment on how intelligent they are</span></li>
<li style="font-family: Helvetica; font-size: 12px; margin: 0px;"><span class="s1"><i></i>but they get Cs and Bs in school, to everyone’s consternation</span></li>
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<span class="s1">That was in high school. Over the next 7 years, this is what happens:</span></div>
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<span class="s1">Sandra goes away to the best college she can get into, graduates in four years, and starts a career. (Let’s say she becomes a teacher and is working towards a goal of becoming a school administrator.) She lives a few states away from her family.</span></div>
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<span class="s1">Bella goes away to the best college she can get into. In her first year, she takes a medical leave because of mental health problems, comes home to her parents, and never returns to that school. Six months after that, she starts occasionally taking classes at the community college. She completes a few classes but hasn’t earned a degree. She gets a job at the grocery store and at age 25, she is working at the grocery store and has no plans to move out of her parents’ house.</span></div>
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<span class="s1">Most people who look at this situation will either make a judgment about disability, or about people’s moral qualities.</span></div>
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<span class="s1">Judgment about disability: Sandra is more “high functioning” than Bella because she lives away from her parents, has a college degree, and has what’s considered a better job. Bella’s disability is more severe.</span></div>
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<span class="s1">Moral judgment: Sandra is hardworking, brave, motivated, etc. and “overcame her disability” by putting in effort and really caring about living independently and having a job. Bella is unmotivated, directionless, lazy, scared of the world and of growing up, and is “using her diagnosis as an excuse.”</span></div>
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<span class="s1">Moral judgment of their parents: Sandra has “tiger parents” who pushed her to succeed and didn’t let her use her disability as an excuse. Bella’s parents failed her. They babied and coddled her and now she doesn’t have the skills she needs to be an adult.</span></div>
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<span class="s1">Actually, when I say “most people,” maybe I should say “me”--I’ve always compared myself to other young adults with similar disabilities, and I’ve always agonized over what makes one person more conventionally successful than me, and another person less conventionally successful. If they drop out of college and I don’t, is their disability more severe than mine or am I more dedicated than they are? If they work 80-hour weeks and I don’t, what’s wrong with me? Why can’t I be like that?</span></div>
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<span class="s1">A few days ago, I realized why.</span></div>
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<span class="s1"><i>Seven Possible Reasons They Turned Out Differently</i></span></div>
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<b>1. </b><b style="font-family: Helvetica; font-size: 12px;">Sandra’s family is abusive.</b></div>
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<span class="s1">Let’s say that in their first year of college, Sandra and Bella were both really stressed out, this triggered a depressive episode in both of them, and they both attempted suicide but were stopped by a friend.</span></div>
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<span class="s1">Bella decided that she wasn’t ready to be a full-time student and live without the supports her parents gave her (meals, reminders about when to do chores and how to take care of her hygiene, help with scheduling doctors’ appointments, and emotional support). She decided to go home, focus on managing her depression, and try to identify and avoid situations where she might become suicidal again.</span></div>
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<span class="s1">Sandra’s friend encouraged her to take a medical leave, but he didn’t understand. She was extremely grateful to be at college because for most of the year, her family couldn’t hurt her; and because she was talking to them less, some of the things they had taught her started to unravel. She realized that the things they had done were really bad and weren’t things she had brought on herself. If she could live away from her family, she realized, she could fill her life with people who didn’t hurt her.</span></div>
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<span class="s1">Sandra felt like if she went home she would get more suicidal, not less. She also felt like being away from her family was worth the risk of dying. So Sandra made her friend promise not to tell what happened, and she did the best she could to hide her depression so she did not get suspended from school for bad grades or being “a danger to herself.”</span></div>
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<span class="s1">If it’s really dangerous or painful for someone to be at home, then that is a big factor in how determined they will be to live away from home. For example, if someone regularly forgets to eat and is in danger of starving if she lives on her own, it’s safer for her to live with her parents--unless one of her parents has tried to kill her. Then she doesn’t have any safe options.</span></div>
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<b>2. </b><b style="font-family: Helvetica; font-size: 12px;">Bella’s parents have more money.</b></div>
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<span class="s1">Bella gets along well with her parents, but she doesn’t particularly like her hometown and dreams of living somewhere else. She also wants to be a vet tech and she is taking classes, but school is really hard for her. If she takes a full load of classes, it occupies so much of her energy that she isn’t able to spend time with friends, sleep and eat properly, and play music--things that are really important to her happiness and emotional stability. Instead, Bella is taking one or two classes a semester because that’s a better speed for her.</span></div>
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<span class="s1">Sandra also gets along well with her parents, and also is not able to be very healthy or have a social life if she is a full-time student. But her parents struggled to support the family when she was in high school, and they can’t afford to keep supporting Sandra. She goes to a college that offered her a scholarship, and works in the summer to help pay for expenses the scholarship doesn’t cover.</span></div>
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<span class="s1">Sandra feels like she works all day at college, struggling to keep up with her non-disabled classmates. She’s also really lonely; she has to say no most of the time when people ask her to hang out. She usually eats Doritos and coffee for dinner while studying in the library, and when she sees groups of friends walking to the dining hall together, Sandra feels like her life is empty. But she has to be able to do this--for one thing, her scholarship won’t pay for more than four years of school.</span></div>
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<b>3. The</b><b style="font-family: Helvetica; font-size: 12px;">ir hometown is mostly white and Sandra is black.</b></div>
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<span class="s1">At best, Sandra feels like an outsider because her family is one of the only black families in their town and she’s barely had any black friends. At worst, white people have threatened her. One reason college is exciting is because there are more people of color; she makes friends who share her experiences, she gets involved in anti-racist organizing, and she feels more accepted and safer than she did in her hometown. Even when she’s having mental health problems, she doesn’t want to go home and feel the way she felt there.</span></div>
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<span class="s1">Sandra also really wants to be able to support herself financially and live independently so that after college, she can choose to live somewhere where she doesn’t feel scared and isolated. Sometimes it’s really hard for her to make it through the day, at college and after college when she’s working as a teacher. But it’s worth it.</span></div>
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<span class="s1">Bella is white and does not have this concern.</span></div>
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<span class="s1"><b>4. Sandra falls in love.</b></span></div>
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<span class="s1">In her first semester of college, Sandra starts dating a guy named Ed. She continues dating him for the first year of college. In her second year, Sandra becomes extremely depressed, and Ed ends up in the role of her emotional support person.</span></div>
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<span class="s1">Sandra really doesn’t want to go home to deal with her mental health problems, because right now, Ed is the only thing that makes her at all happy. Ed loves Sandra but he isn’t super comfortable with being the only thing that makes her happy. He encourages her to at least try to deal with her depression even if she isn’t going to take a medical leave, and he helps her go to therapists, try medication, and do other things to improve her mental health.</span></div>
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<span class="s1">When they’re juniors, Sandra and Ed start living together off-campus. Sandra has problems with multi-step tasks like cooking food and cleaning; and she also has dyspraxia which makes it hard for her to do some household chores. Ed understands this, so he always does the chores that Sandra can’t do. They work together to make charts and other reminders to help Sandra with multi-step tasks.</span></div>
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<span class="s1">After college, Sandra and Ed get married. They move to the city that Ed is from, where his parents live. Ed’s parents love Sandra and treat her like their own daughter. They’re both teachers and Sandra often asks them for advice when she is having problems at work. Sandra tells them she is overwhelmed by the idea of finding a GP, dentist, eye doctor, etc. in the city, and Sandra’s mom finds them for her and even reminds her to make regular appointments.</span></div>
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<span class="s1">Bella would like to move away from her parents--they’re nice, but they annoy her sometimes and she really wants to live somewhere that isn’t so hot in the summer. But how can she possibly do that when she can’t even make a bed by herself and often gets confused when trying to cook basic meals? What if she moved far away and her job was too hard and she didn’t know anyone and didn’t have anyone to talk to? What if she was too stressed out and confused to ever find a doctor or remember to make appointments, and she got really sick and didn’t even know about it until it was too late?</span></div>
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<span class="s1">She wants to do it, but she just can’t.</span></div>
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<b>5. B<span style="font-family: Helvetica; font-size: 12px;">ella is really happy living with her dad.</span></b></div>
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<span class="s1">Sandra likes her parents just fine.</span></div>
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<span class="s1">Bella and her dad are extremely close; they have long conversations about absolutely every subject, and they share a lot of the same interests and values. She even thinks he might be Autistic too. Bella’s mom left when Bella was three, so she and her dad have had 15 years to learn to function as a unit. As Bella got older, her dad encouraged her to help out around the house and things gradually developed so that they both were taking care of housework fairly equally, each doing the things they were best at.</span></div>
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<span class="s1">It was really important to Bella to do well in college. Everyone said she was super smart and she wanted to defy the negative expectations people had of her because she was Autistic. But when she went to college, it was really hard for her to live in a dorm instead of living the way she was used to, and the workload was too much for her. She started having panic attacks and shutting herself off from her new friends, and when she started to fantasize about killing herself, she knew she had bitten off more than she could chew. She needed to go home and be in her regular house and spend time with her dad, who she could talk to about what had happened and figure out when she would be ready to go back to college.</span></div>
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<span class="s1">But after going home and after a long time of trying to be ready, Bella realized that she wasn’t ready and didn’t want to be. She loved her town. She still had some good friends who lived there--and her best friend was her dad. She didn’t want to move away from her best friend just because adults weren’t supposed to live with their parents. She and her dad got along well and were a good household. Now that she had decided what she wanted, Bella tried to think about what, if any, plans she should make for the future.</span></div>
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<span class="s1">Bella has decided that she wants to work part-time at the grocery store; it gives her days a good structure and she meets new people. She also is taking classes so that she can have a higher-paying job in the future, but she isn’t pushing herself that hard because there’s no immediate need. But if her dad becomes sick or disabled when he’s older, Bella wants him to be able to keep living in their house and not have to go into a nursing home if he doesn’t want to. He’s always supported her choices and she wants to be able to support his.</span></div>
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<b>6. S</b><b style="font-family: Helvetica; font-size: 12px;">andra is a supercrip.</b></div>
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<span class="s1">When Sandra was a kid, she could tell that people thought less of her because she had disabilities. They didn’t expect her to go to college and they didn’t expect her to be able to drive and they didn’t expect her to be able to live on her own, or get married, or have a high-paying job. Sandra hated the way those people looked at her and she grew up feeling like the only way to be a worthwhile person was to accomplish all the things they thought she couldn’t do.</span></div>
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<span class="s1">When Sandra is in college, she puts her academic success ahead of everything. So what if she works slower than the other students? She’ll just stay up all night several nights a week so she can get work done. She doesn’t really need to eat regular meals either. She doesn’t deserve to eat regular meals if she can’t do as well as the non-disabled students.</span></div>
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<span class="s1">Sandra avoids talking to her parents because they always get really worried. They ask her if she has any friends, if she likes the campus, if she’s taken any time off from schoolwork to just relax. When Sandra explains that she doesn’t have time to do that because she’s not as smart as the other students, her mom asks Sandra to come home for Thanksgiving. They’ll pay for it. But Sandra wants to stay at school over break so she can get ahead on the reading.</span></div>
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<span class="s1">Sandra’s mom says she really just wants Sandra to come home for a while so they can take care of her and she won’t have to be so tired and stressed all the time and can get some sleep. Sandra tells her mom that she is fine and she’s 19 now which is old enough to act like an adult. <i>If I’m 19 and can’t be an adult, I don’t deserve to be alive, </i>she thinks to herself. This is Sandra’s mantra.</span></div>
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<span class="s1">Sometimes Sandra thinks about killing herself a lot. She’ll wake up feeling like it is going to happen that day. But she would never tell anyone about this, because they would force her to take a medical leave. Sandra would rather die than not graduate college in four years. So she might as well keep going whether she dies or not.</span></div>
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<span class="s1">Bella doesn’t have this attitude; she feels like she deserves to sleep and eat regularly, and she would definitely rather take a medical leave than die.</span></div>
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<b style="font-family: Helvetica; font-size: 12px;">7. Sandra is extremely beautiful and charismatic.</b></div>
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<span class="s1">This gives her an advantage because a lot of people really want to spend time with her and do things for her.</span></div>
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<span class="s1">Bella is an average girl with average charisma and can’t “overcome her disability” because she doesn’t receive all the support that Sandra does.</span></div>
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<span class="s1"><br />
And so on.</span></div>
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<span class="s1"></span><br /></div>
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<span class="s1"><i>Golly Sandra, you’ve grown up really crazy</i></span></div>
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<span class="s1"><i></i></span><br /></div>
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<span class="s1">When I was in a Sandra #6 situation, I would get super angry at disabled people who took leaves from school. Like, I would hear about someone I didn’t even know taking a medical leave because they had a panic attack and I would be like, “Fuck him! I almost killed myself this morning and I still went to class even though I was crying too hard to see the Powerpoint.” I would start being mad at the person for doing something that I thought was weak and immoral. Didn’t they know that they should try to do things as well as everyone else?</span></div>
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<span class="s1">Obviously being mad at people for taking a medical leave isn’t a sign of a really well-organized mind, but I don’t think I realized until recently <i>how</i> disorganized that anger was. The reason I was fixated on these people wasn’t because they were doing something bad, but because they were doing something good. They were caring about themselves. Even if they prioritized a non-disabled version of success a whole lot, there was a certain extent of suffering that they weren’t willing to go through. They didn’t feel like they deserved to die for being disabled--or if they felt like that, at least they knew they were wrong.</span></div>
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<span class="s1">I wasn’t feeling superiority, I was feeling inferiority--I was <i>jealous</i> of them. They valued something more than looking “normal,” being “smart,” hitting “milestones” at the same age as non-disabled people. Maybe they had friends at home so they wouldn’t be isolating themselves from everyone if they couldn’t stay at school. Maybe their parents wouldn’t be disappointed in them and say they should have worked harder, been more organized, taken medicine they didn’t want to take.</span></div>
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<span class="s1">I’m hesitant to write about this the way I am, because of the power dynamic. People like Bella are judged so much. People see it as a failure for a young adult to live at home, and for a disabled young adult, living at home can seem like the fulfillment of lifelong low expectations. But in every scenario I wrote, Bella is making really good decisions. She may not be a success if the goal is to imitate a non-disabled person, but she is prioritizing her happiness and safety and she has goals that she can accomplish without ruining her life (and imitating a non-disabled person will make your life empty even if it doesn’t kill you).</span></div>
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<span class="s1">In the supercrip scenario, Sandra isn’t making a ton of sense, but in a lot of the scenarios she is making good decisions too. In some of the scenarios she isn’t receiving adequate support to make it through college or live on her own, but going without support is the lesser of two evils. In other scenarios, like the one where she falls in love with Ed, Sandra is really lucky and support falls into her lap, so she loses nothing by living away from her parents.</span></div>
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<span class="s1"></span><br /></div>
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<span class="s1">In most of the scenarios, Bella is able to live with her parents because she has an advantage that Sandra doesn’t have--she is white, she has more money, her parents aren’t abusive, she doesn’t hate herself, etc. In other scenarios, Sandra is able to live away from her parents because she has advantages that Bella doesn't have. I</span>f Sandra and Bella are still friends at age 25, maybe Sandra is jealous of Bella because she feels like Bella had more choices. But Bella is probably pretty jealous too because society judges people like her and wants her to feel worthless. She also doesn’t have the freedom that Sandra has.</div>
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<span class="s1"></span><br /></div>
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<span class="s1">Depending on the scenario, one of them can often be considered better off than the other, but only a few of the Bellas and Sandras are really happy with their lives. This is because, bar extraordinary luck, a lot of people with disabilities like Bella and Sandra are not considered to be entitled to support in living. They have to choose between living in bad physical and emotional condition so they can be free (and seen as a success), or living with parents, or getting in a relationship with someone who is willing to help them, or just ragequitting the whole thing.</span></div>
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<span class="s1"></span><br /></div>
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<span class="s1">The choice they make is determined by a whole lot of factors, and two people with exactly the same abilities can make totally different choices without either of them making a bad choice.</span></div>
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<span class="s1"><br /></span></div>
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<span class="s1">(I wrote this post in July and didn't end up posting it because I wanted to nitpick it but I ended up not doing that. My friend had said that in my posts, I presented all the Bellas as really smart for choosing to stay home. I know there's plenty of bad reasons to drop out of college but I don't really feel the need to enumerate them because dropping out is so stigmatized and everyone assumes it's being done for a bad reason, while disabled people who graduate college are idealized.)</span></div>
Amanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.com2tag:blogger.com,1999:blog-8466691337834051176.post-27373503989299679592013-11-20T01:34:00.001-05:002013-11-20T04:06:26.697-05:00when loving your enemies is hating yourselfSome more about the stuff the other day.<br />
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I think having compassion or trying to understand someone's point of view is a luxury. Well, luxury is the wrong word but I mean it should never be your first priority in a conflict. Other things are more important, and compassion/seeing other people's point of view should only be attempted if other things are there first.</div>
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Lia left this comment on my <a href="http://magikarprefusestoevolve.blogspot.com/">pop culture blog</a> where I had reviewed a glurgey YA novel about bullying:</div>
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<i>"i can say this as someone who often tries to cope with things by being sort of detached but also outwardly optimistic and upbeat even if i'm not really feeling that way, it's not actually desirable or emotionally healthy to react to everything that way. a person who acts like that in response to bullying in real life is still going to be affected by the bullying, but they're more likely to turn their feelings about it inward on themselves. instead of (rightly) getting angry at the bullies, they might get angry at themselves for being bullied, for being unable to stop the bullying, and for being angry/upset about anything in the first place. sometimes these are people who have been taught, or have decided, that it's morally wrong to feel or express negative emotions. sometimes these are people who can react really calmly to being mistreated because they are very used to it and honestly believe that they deserve it or that it's normal. and that's less inspiring than it is depressing."</i><br />
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Lia is pretty stellar.<br />
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My mom has been visiting me and tonight we were having dinner with the family I work for. We got on the subject of different illnesses and injuries I had when I was a kid and how usually people did not realize what was going on because I didn't have the level of distress they were expecting.<br />
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Not having enough visible distress is something I really hate about my life, to the extent that I've always assumed it was some kind of trauma reaction. There's not really a ton of evidence for this so it might just be that I'm projecting/imagining that because it has been such a bad experience for me. It's obviously been going on since I was really little so the list of possible traumas is pretty narrow and it's nothing obvious. Also, it is a common problem for people with autism so it's either that it results from a traumatic experience that a lot of us have, or it just is part of autism.<br />
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In addition to less visible distress I also have more trouble noticing and identifying my feelings than other people do. To make things even more annoying, I sometimes develop obsessive fears about having certain feelings and because my feelings aren't very concrete to me in the first place it can be really easy for me to get convinced that I'm really feeling those things just because I'm worrying about feeling them.<br />
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I really confused someone recently by talking about how far I'll go to avoid situations where someone downplays my disability or refuses me services. I basically have chosen not to ever pursue any kind of services because if I was not able to get them, I would get too upset, and to me that's more important than a chance to get help I need.<br />
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I guess it doesn't make that much sense to other people why it affects me so much if someone doesn't think I have a significant disability*, even if the person isn't a close friend or someone who has a lot of power over me. The reason it affects me is that <i>I</i> don't feel secure/distinct about my disability but it's very important for me to know that I'm disabled in order to manage and cope with my life. I surround myself with people who either support this, or don't talk about it. If someone says that I don't have a significant disability then that idea is introduced to my brain and even if I know the person isn't that smart or doesn't know me that well, it introduces a lot of doubt and I start seeing myself as a liar and a faker and can become suicidal or otherwise be affected in my day to day life.<br />
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*(I know some people use the term "significant disability" to mean a "profound" disability like my boss has, but I'm literally using it to mean a disability that is significant, i.e. it affects my daily life in a lot of major ways even though I can work, talk, etc.)<br />
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If someone says I'm not disabled or says something else that demonstrably isn't true, but would be threatening to my quality of life if I believed it (for example, saying that the family I work for hates me), I immediately want to remove myself from that person and see them as an enemy. I don't want to engage with the person about this or even think to myself about why they think what they do or why they said it to me. If I think about it too much, I will definitely start believing it so I just have to be brief and rational--it's not true, they were wrong, it's a harmful idea, and I'm rejecting it and the person who introduced it.<br />
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By the way this can be pretty unfair because someone who is perfectly nice might just make some uninformed statements about my disability or something else, and they might even see their mistake if I just talked to them about it, but I can't talk to them because I can't risk being convinced by them. If I did talk to them, it would be very brusque to just give them the information about why they're wrong in case they want to think about it, and then end the conversation. I probably wouldn't do this with most people, because it obviously seems mean and hurtful, but it's the only way that I would be able to engage without potentially hurting myself.<br />
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I'm going a bit off track here--the original thing I was thinking about was being secure in knowing when someone has hurt you, and being secure in the idea that it's wrong for someone to hurt you. Some people are secure in this and some aren't including me. In my opinion, if you are like this and immediately attempt compassion (or you encourage someone like this to immediately attempt compassion), what is really happening is that the person could hurt themselves.<br />
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For example, let's say Emma and Shirley work together. Emma is very brusque with Shirley, makes fun of the way she walks, talks, and looks, never thanks her for anything she does, and is patronizing. Shirley is hurt by the way Emma acts and finds it to be insulting. She doesn't like Emma because of it. Shirley decides to try to see the good in Emma and treat her well even though she doesn't like her.<br />
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On the other hand, let's say Shirley never gets to the point of being insulted and not liking Emma, even though Emma is treating her disrespectfully. Trying to be compassionate, Shirley always makes excuses for Emma or tries to think of reasons that she has done something wrong to provoke Emma or reasons that she is wrong to be upset by the way Emma acts. When Shirley has negative feelings toward Emma she tries hard to make herself feel the opposite and see Emma in the most complimentary light. Shirley works so hard to be nice to Emma that she comes off like she particularly likes her, even though Emma is extremely rude. I have been in this situation a few times and I think it damages me when instead of focusing on seeing that someone is treating me badly, I focus on seeing the good in them.<br />
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I have to assume that most people (or at least people who have tried to encourage me to be more compassionate/educational/thinking about other people's feelings) take it for granted that they will see it as wrong for someone to hurt them and that nothing can change that. Then when they talk about compassion, maybe it's like they're skipping the foundation that should be in place; they always have it so they barely notice it and don't mention it. But to me, because the foundation isn't there, they're advocating something quite different.<br />
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Without the foundation, loving your enemies is just hating yourself.</div>
Amanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.com2