//

(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.

for your future reference

I'd just like to use this space to register my disappointment with people who think that autism is the only disability.

For example: fairly clueless/uninvolved people who think that anyone who can't talk has autism, or even think that anyone with a disability has autism.

Parents/family members who say they're talking about people with "special needs" but only talk about autism, or assume that any disabled person has autism.

People with autism who talk about issues that affect many people with different disabilities, but talk about the issues like they are autism-specific.

People who talk about "disability" or "disabled people," but only care about autism.

And many more.

mixed feelings

The family I work for went to a protest against the cuts to classes, programs, and teachers at City College of San Francisco. CCSF offers non-credit classes aimed at disabled people which cover all kinds of subjects, from arts and crafts to trying to get a job. Anna goes to CCSF drama classes three days a week and clearly likes getting to see people she knows, listen to music, and participate as much as she can in the acting and dancing. It's a big part of her life and it doesn't even cost anything, so it's horrible to think that this opportunity could be taken away from her and all the other people who benefit from it.

Anna got to be on the news representing the point of view of disabled students, and her mom was interviewed explaining how the cuts would impact her.

I thought it was cool to see people I really like on TV talking about something really important, and Anna has a great sad face. But I also felt frustrated, just like I do about most representations of disabled people in the news. I've been in class with lots of the other developmentally disabled students who were at the protest, and most of them could have answered questions with speech, sign language, or AAC, some of them very fluently. Instead, the reporter chose Anna, who couldn't answer the questions and had to have her mom speak for her.

Of course, Anna is great and I think everyone should pay more attention to the point of view of people who don't use language. But if someone really wanted to put an interview with Anna on TV, they would need to really get to know her and learn about how she communicates. Someone who was willing and able to put in enough time could make a longer video showing Anna's feelings about her classes. But Anna couldn't give an interview in the form of a couple of sentences on the evening news.

When looking for an interview in the form of a couple of sentences, the reporters decided to go past all of the protesters with developmental disabilities (many of whom were older adults and not with family members) who could have directly talked about their experience in exactly that form. They found someone who couldn't talk about her experiences in that form, and was with her parents, and had to have her parents talk about her experience. Surprise surprise.

Conventional vs. unconventional timers and problems with people in the household

So a big issue with timers is how other people are going to feel about them, especially people you live with. I guess I'm assuming a reader who is making some decisions about how to conduct their life and possibly having to explain some things about their disability to roommates or family members.

If you use a conventional timer (which I guess regular people mostly use for cooking?) then it's confusing to people because you're obviously using it for things that don't have to do with cooking and sometimes it seems like you're not using it for anything at all. Also, it can be a problem because a lot of people find the sound of a timer going off to be really unpleasant and/or stressful and then it's an issue of being considerate to the people you live with.

Actually, even unconventional timers like TV shows and singing are things that you can have to explain. If your family is really fussy about your disability, they might get upset because they perceive watching TV or listening to music as a leisure activity and they think that you should be doing something constructive. Even if you are doing something constructive and you try to explain that TV and music are making it possible for you to do it, they might just think it's an excuse.

Something that I find frustrating is that even if people are not annoyed with me for watching TV a lot, they don't understand my relationship to TV. Sorry that just sounded ridiculous, but what I mean is that people think I'm just really into watching TV shows and I want to sit down and watch TV shows with them. To me structuring my time around watching TV, instead of structuring TV around what I want to get done, is a waste of time, energy, and episodes. It can be fun sometimes just like any waste of time and energy can be fun, but it's a completely different activity from my usual TV watching (TV as timer).

Even if I do sit down and watch TV with someone (which is fine as a leisure activity and sometimes I'm prepared to do leisure activities), I feel tense because I'm not used to just watching TV and doing nothing else, so I like to eat, play games, or be on the computer at the same time. Obviously some people don't like this much so I try to make my secondary activity be eating or drinking because it bothers people less. Also, if I get drunk enough, dealing with being drunk can be the secondary activity.

I guess it's kind of a stupid thing for me to take personally but it can be hard for me to know that other people perceive me as doing leisure activities all the time when I am literally working hard at something right then.

Also there's the fact that people are a bit less likely to put up with something that mildly inconveniences or annoys them if they think you're doing a leisure activity than if they think of it as an actual support that you need. Some disabled people might think it's good if singing in the shower helps a person take showers properly, because it doesn't come off as different from other people. But it is also hard if someone says it's annoying to hear you singing in the shower, and they don't understand that by saying that they are making it hard for you to take care of your hygiene which affects your quality of life.

Also if you don't understand about timers

Something that I find tough is that I don't really know how to describe the daily effects of my disability to people and the only way I feel like I can do it is by just showing people or telling people about things that I need to do to function.

The problem is, it seems like a lot of people can't extrapolate what's going on from what I show them, and some people's only reaction to me saying, "See, I have to do this to do this" is to encourage me to do something that is a more common way of dealing with things. I wish people could try to understand what I'm like by seeing that I have to write things on my hands and my computer so I can always see them, but it seems like most people just look at this strategy and see a problem and try to tell me that I should write stuff in a special book (which it would be harder for me to use because it would take more memory and energy to check what it says).

Writing on myself particularly is something that people have always been kind of distressed about and the only reason I can see for this is a bunch of negative associations that are clearly associated with disability. People usually see it as something that looks bad because it clearly indicates that someone has thinking and memory problems, but when I was growing up I was also told that I shouldn't do it because it would imply that I'm the kind of person who would self injure.

It's not really an issue for me that someone might think I have problems with my memory or self-injury because those things are true and I don't think that indicates anything bad about me.

But anyway, I just really wish that people could understand what's wrong with me just by looking at things I have to do, but if I can't even explain to other people what's wrong with me then I guess it's not really fair to expect them to figure it out when I can't.

Timer Corner

Beep beep beep, it's time for...

TIMER CORNER!



So, if you have a disability, you might find that you need to use a timer. If you're wondering why a timer would help someone function better, congratulations! You don't have to think about some things that are a big part of my life.

(Yeah I should chill out and be nicer but sometimes I get tired of feeling like I can't talk about things like timers because they are too weird.)

I liked to use timers when I was little just because I would time myself while I was singing. My family had a classy timer with three different displays--one would count the time something was taking, one was a typical timer that counts down, and one was a clock. There wasn't really any reason for me to time myself singing but I guess even at that age I could tell that I was going to have a long love affair with timers and I liked being around them.

When I was in fifth grade I spent about half a year being pretty organized and independent about getting ready in the morning. Until then, I would always have trouble getting ready because I would start thinking, spacing out, or reading books in the middle of doing things. But in fifth grade, I decided to start getting up at a certain time and turned my morning routine into a race where I was supposed to take a certain amount of minutes to do every piece of the routine. There was a natural reward in that if I finished everything fast enough, I'd have a bunch of time to watch TV and eat before school. I did pretty well with this for the rest of fifth grade, but in middle school I had to catch the bus earlier so the motivation to work that hard wasn't there.

In the last two years of high school I started getting a bit better at these things again because I would use music and timers to do all kinds of things like getting ready for school, taking showers, and studying. At that point in my life I really didn't like to think of myself as Autistic or disabled so I didn't really think about what I was doing, and I didn't know that other disabled people used timers. When I went to college and started living in a dorm with a roommate, I stopped using timers and music as much, because I had to do so many activities of daily living with someone else in the room, and I felt self conscious about it. Obviously, I wasn't able to do things as well or quickly once I decreased my use of timers. But I never totally stopped using timers and when I would play guitar, I really enjoyed timing myself and playing my songs in 5- or 10-minute intervals.

About the time I started writing this blog, when I was 20, I started using TV shows in a similar way to the way I use timers and music. In the last two years of college, I used timers and timer equivalents more than in the first two years, and the year after college I probably used them more than I ever had since I was in high school. I wouldn't say I use any of my timers or timer equivalents as effectively as I should, but I'm continuing to develop new ways to use them and learning more about them, and so I'm going to write some timer reviews, which will take into account what something is good for and how well it fits into my life. These are the things on my list so far:

1. West Bend timers
2. Update International timers
3. online-stopwatch.com
4. alarms on my phone
5. listening to CDs
6. YouTube videos
7. TV shows
8. singing
9. trains and buses
10. people

PS. I also told my friend how I find it offensive when I describe my job to people and they'll say things like "That must make you feel good, helping someone out." Then I automatically think the person is an idiot. My friend, who works with kids, said she doesn't exactly find it offensive but it still makes the person unappealing. She said it seems like people can't relate to the idea of someone actually liking that kind of work so they assume it has something to do with wanting to do good deeds. All they can think about someone who works with kids or disabled people is, "Oh, they must like feeling good about themselves."

She said that she doesn't understand the appeal of working in an office and that when she sees people in suits going by, she thinks, "Oh, they must like money."

my dream is a dead end

I'm kind of in a brain fog but I realized I've never said this straight out. I kind of want to say it to my Dream Job family just so they know they are the Dream Job and I will never leave, but I guess no one needs a big avalanche of Amanda feelings to fall on them. So I will say it here.

Plus I seriously do think this is a problem.

I am a career direct support worker. We could use a bunch of words for this, like aide, staff person, nursing assistant, personal care assistant, caregiver, etc. But for me I feel like the difference is whether your job is about an action or a person. Some jobs with people with disabilities (or kids or seniors) that are about action are like therapist, doctor, teacher, social worker, etc. You're supposed to be improving the person's abilities or solving some of their problems. Some people who do these jobs are doing great stuff. Some are not. But the job is focused on changing/doing something.

Support work is about a person or people. In a bad support job, like in an institution, you're supposed to control people. In a better support job, you just help a person with the things they need help with in the course of a day. It's not like you don't expect the person to ever change when you're doing support work, and in some cases you might hope that you affect the person's life positively, but the focus of the job isn't change. It's just doing what the person needs/wants.

I got interested in working with people with disabilities just because I like being around other people with disabilities. So I was always interested in doing support work, not being a teacher or therapist or something. It's fine if people are into being a teacher or therapist, but sometimes I feel sad because I feel like I'm one of the only support workers I know who has always wanted to be a support worker and wants to be a support worker forever.

It seems like for a lot of people, direct support work is like being a cashier. It's fine for someone to be a cashier if they're doing it as a short term thing but the kind of people I grew up with would not understand how someone could be a cashier for their whole life and not have a problem with it. Most young people I've known who do direct support work are either in school to do something else (usually an action-based job) or are doing it to "have an experience" or something. I think this is too bad.

Of course, I really don't think any job should be considered less valuable than other jobs. I don't like the idea that there are only a few jobs that people should want and everyone who doesn't have one of those jobs should be unhappy and spend their time trying to get one of the valuable jobs. But when it comes to this particular issue, I find it especially frustrating. On a philosophical level, why is it that people get paid less and get less respect for supporting someone, and get so much money and status for fixing someone? Practically, it's generally better for someone to have the same support person for a long time so they can have someone working for them who actually fits their needs and knows how they like to do things.

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.