Inaccessibility 2: 2 Menus 2 Furious

I was rereading my Inaccessibility post from last year 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.

Your mileage may vary (I can't help thinking of the Deal with Disability post about being brought a sippy cup) 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.

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.

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 wrong 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.

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:

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. Shane Burcaw's blog has some good posts about being treated like a child at restaurants and stores, when he can order for himself.

2)Even if someone MAYBE doesn't need a menu or water, if you normally bring a menu or water for each person at the table, 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.

Inaccessibility

I 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.

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.

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.

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.

Anyway, here are some stories.

Walgreens

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.

A store staff reassured me this wasn't a problem, because he would get us whatever we wanted from upstairs.

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.

"You can go and get them to show to her," he said.

"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?"

"Oh, I can stay with her while you go," he said cheerfully.

(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 hard 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.)

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.

Crystal Store

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.

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.

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.

Mexican Restaurant

Anna and I were at our favorite taqueria. If I go there by myself, the staff ask, "Where is the girl?"

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 next to the line.

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.

"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.

A minute later, the lady said, "That table over there is free. You could put her over there while you're in line."

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.

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 most. 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.

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."

Other Mexican Restaurant

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.

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, "Two wheelchairs?" 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."

(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 at 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 can't 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.)

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.)

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.

Then, the following things happened, some of which I wouldn't have cared about if they hadn't all happened in combination:

1. The waiter only brought menus for Penguin and me.

2. He only brought glasses of water for Penguin and me. Then he asked us if he should bring water for Otter and Anna.

3. Penguin: How big are the meat strips in the chicken or steak quesadilla?
Waiter: This big.
Penguin: Then [Otter] will have chicken strips.
Waiter: The chicken strips are just as big as the steak strips.
Penguin: Yes, but chicken will be easier for her to chew.
Waiter: Okay, but you should probably still cut them up into smaller pieces.
Penguin: Yes, I will.

4. Otter and Anna are not dainty eaters. They have motor issues! Plus, Otter loves 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.

Anyway, Penguin asked the waiter for "a stack of napkins."

He said very sternly, "I can bring you a few napkins, but I can't bring you a stack of napkins. We're trying to conserve."

He brought us three napkins. Fortunately, we had both collected unused napkins from a previous lunch for a situation just like this one.

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!"

"Really?" he said. "Well...to be determined, I guess." He went away again.

(Again, barely anyone was in the restaurant--we weren't taking up anyone's table with our slow eating.)

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 stack of napkins! Quelle horreur!

The Sublime Mysteries of Belugitude

I 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.

(A drawing of a floating beluga feeding eggs to a beluga in a wheelchair.)

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.

ANNA'S DISABILITIES

 (A photo of Anna sitting on the couch and looking very solemnly at the Christmas tree.)

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.

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.

"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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

AMANDA'S DISABILITIES

(A photo of Amanda sitting with a beagle standing on her lap.)

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.

Since I was hiding my disability, I had two consistent problems in all my jobs:

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.

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.

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.

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.

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.

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.

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.

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.

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.

Anyway, that is what's wrong with Anna and me, pretty much.

Why I Published A Picture of a 24-Year-Old Looking Bored With a Stuffed Dragon

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?

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.

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."

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.

But on another note, I'd like to put forth my 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.

Here are some of my pictures that I consider bad:

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.

Here are some pictures I'm proud of, because they show Anna's personality.

 

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.

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.

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 only because they find it shocking.

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, 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.

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."

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.

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.

//

(1)

People are well-intentioned when they say that anyone can do ___ regardless of their disability, but it actually just makes them look ignorant. I understand the idea that a lot of people with disabilities who would want to do something and could do it are not receiving the support they need, and too many young PWDs are told they'll never be able to do the things they aspire to do.

If someone wants to do something you shouldn't tell them they can't do it, but that's different from making generalizations about everyone. My personal least favorite is "everyone can work." Well, for example, how is someone going to work if they can't move anything except their eyes and aren't suited for a job that they could perform just with their eyes? How is someone going to work if they're so depressed they can't get out of bed in the morning or make basic decisions? How is someone going to work if they're consumed by a desire to physically injure themselves all the time and it takes every bit of energy not to do that?

I wish this wasn't the case, but I hear people using the phrase "everyone can work" in almost an aggressive way, as if it's ignorant for a non-disabled person to say some disabled people can't work, or cynical or lazy of a disabled person to say that they themselves can't work. I think this shows a fundamental lack of empathy and if you don't understand why some disabled people can't work, then you shouldn't even be talking about disability and work because you are really uneducated.

Sometimes it seems like providers, family members, and even self-advocates have a homogenous idea of "disabled people" and they don't make room in their head for the large percentage of disabled people who don't fit their image.

(1) Actually I think Ratatouille does a good job addressing this issue, by acknowledging the difference between "everyone can be a great artist" and "a great artist can come from anywhere."

2.

My client cannot talk and often doesn't respond to things quickly. Her volition is pretty confusing to me when it comes to movement so all I can say is that her movement can be pretty telling, but I sure don't expect her to move on schedule or on command.

I feel like all this is implied with the vague label of "profound disabilities" and presumably we all know about people with "profound disabilities," so why is everyone so confused? I don't know what to say when people ask me why she doesn't look at them or answer them. I don't mean people with no experience, but people who are at programs with their disabled family member or client, or are even running the programs.

Also the eternal question, "Does she understand everything I'm saying?" to which the answer is a resounding, "I don't know."

Maybe I'm just a crappy person and I can tell you the idea has occurred to me before, but I get extremely impatient. It feels like a lot of people either demand responses from her due to their wholly unfounded assumptions that she can give one, or they just don't think about her at all. The idea that someone without obvious communication might enjoy some attention is just as baffling as the idea of someone without obvious communication existing in the first place.

I've sometimes gotten the impression that stuff that's "for developmentally disabled people" does not try to be inclusive of developmentally disabled people with certain support needs or that people who are "interested in working with developmentally disabled people" do not find it interesting to work with developmentally disabled people with certain support needs. I'm glad to say I haven't seen any extreme examples of this in the 5 months I've been working at this job--just impressions--but Single Dad Disabled Daughter writes about some infuriating stuff.

3.

On the other hand, I have a disability and I do have a job and answer people when they talk to me. So people who like disabled people who do those things should like me, right?

Well, not really.

I'm not sure why it is that a lot of people who claim to like and enjoy people with developmental disabilities, or even work with them, have a problem with people who are slower than they are, can't do things that they can do, or just look or act different. When they meet someone who they don't immediately recognize as disabled or who they aren't meeting in a context where they would expect to meet a disabled person, the friendliness they would show to an Actual Disabled Person is not there at all, and they are just as contemptuous as anyone else would be about the person's impairment.

The only thing I can think of is that when these people relate positively to disabled people who fit their idea of disabled people, they're not doing so because they actually like people regardless of disability, or even because they like personality traits that sometimes come from living with certain mental disabilities. It's because they've created a new category, "developmentally disabled people," that they see as different from other people and relate to differently from the way they relate to other people.  If a developmentally disabled person is too much of a peer, or looks or acts too similar to non-disabled people, they can't put them in the "developmentally disabled people" category, so they can't accept their disability.

Maybe it's an Uncanny Valley thing but I don't really care because I am coming out of the following situation.

I had a friend who spent a lot of time working with a group of people with developmental disabilities who are quite different from most people I know, and I knew that she liked that group of people a lot. Technically, she knew that I had a disability, and even professed to support disability rights. That sounds like a pretty good deal on a friend right? It was a long time before I admitted to myself that this person made me feel scared and uncomfortable about nearly everything related to my disability. When we met someone who I suspected might have a disability, I cringed inwardly because I knew she would criticize the person later for being too slow or too weird. I was afraid for her to meet my closest friends, who are all Autistic or crazy, because I didn't know if they would be able to hide their disabilities well enough to avoid being criticized by her.

There are some people who you know are friends with you because you're just barely good enough for them. And actually, there are people who are friends with you because you're bad enough for them, too--you're a "special needs" person to them, not an equal. Maybe I'm becoming an asshole but I have no interest in either type of friend anymore.

Anna is not that nice

I work for a woman named Anna who people are always saying is sweet and nice. Her dad gave me permission to blog about her, but he might not have done that if I told him that when another client at her day program kept saying, "Anna's nice, she's a good girl," I said under my breath, "No, not really." I hope no one heard this because it doesn't sound very complimentary of Anna, but I don't think saying she's a good girl is very complimentary either. I can't fully explain why it annoys me when people who don't see her much describe her that way.

Obviously, my reaction isn't because I think Anna is a mean person. She's just fine on the sweetness/niceness scale, but it's not something I would say when describing her. I would say: she's very particular about doing the things she likes and having her favorite things around her. She's kind of dignified and she plays her cards close to the chest, maybe because of her disability or maybe just because it's the dignified way to be. There are a few things that she immediately reacts to, but usually when Anna meets someone or has an experience, she takes a while to process the situation and then shows how she feels later. She likes throwing things and ripping up napkins and paper.

First and foremost I would describe Anna as someone who likes to have her own way, which I think is not a problem because Anna's way is pretty cool and doesn't involve making bombs or setting people on fire. I like that her parents don't treat her as someone who has "behavior problems" just because she has strong preferences and is good at expressing what she wants. There is a lot to commend about a disabled person who is confident in herself--so many people think there's something sinister about a disabled person who really likes some things and really dislikes others. Even writing this, I feel like I have to shy away from triggering some stereotype of a person who will scream and break things because they didn't get to eat their favorite kind of sandwich. It seems like there are only two ideas about disabled people--an overwhelmingly good/sweet idea, and the idea of someone who has preferences, and is therefore totally dangerous or a burden on other people (because people have to accommodate them which is a fate worse than death).

Where's the middle ground for someone who has lots of preferences, but in a way that the people around her thoroughly enjoy? Or who isn't mystically "full of love," but is just as capable of love as everyone else?

I'm not really sure, and maybe I'm the one limiting Anna by scowling inwardly when people say how good she is. But it just seems like a way of describing someone that is fundamentally impersonal and ill-fitting, especially for her.

I work for a nice family. I hope they aren't regular readers of my blog because I am going to quote one of them (from memory, so not very well, but I feel like it's an important thing to think about).

"You try to figure out tricks to keep social interactions going, when you have a child who is often unresponsive. Someone asks them a question and the person is waiting and waiting, and so then finally you say okay, and you say something to keep the interaction going. But over time, the time before you answer keeps getting and shorter, and your child is getting phased out of the interaction."