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(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.

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.

to him it was a joy until he ran out into the warm air

About a month ago my mom was here and she said something about wondering if she and my dad had been too hard on me when I was growing up. We were talking about our respective MH stuff and I had mentioned I was probably more likely to kill myself than be unemployed.

If I wasn't like that though I would probably be unemployed. Do I ever want to quit my job. Not for all the ethical reasons. Just the working 3 12-hour shifts in a row with a 4-hour commute and 5 or 6 hours of sleep in between and eating one or two real meals in the whole stretch. I'm very able bodied but I still hate my body for its soreness and slowness and tiredness, my headaches, and I hate my brain for starting off slow even with enough sleep.

Sometimes I have had gaps in my memory a little bit and Clayton says if you don't sleep this will happen and you won't even know.

One of my best friends, who I know doesn't read this blog anymore so I can say this, is someone who I've consistently encouraged and cheerleaded in getting a job. Now they have a job and they are miserable. They live in fear of losing their job and they can't cope with that fear and working a normal amount of time makes them exhausted.

I'm tired too but what I am learning about myself is I can just keep going and going, everything just goes underneath something else. When I think about myself a year ago being all depressed about school and sleeping ten hours a day and eating I want to punch myself in the face. I'd give anything to be sleeping, I'd give anything to be someone who complains about having had less than eight hours of sleep. I'd give anything to be able to sleep without waking up scared. During the weekend I live from cigarette to cigarette and for Athena smiles and that's about it.

You know how I tend to put disabled people into two categories. Supercrips and not. All my friends hate it. It usually makes them feel bad no matter which one they are.

We're not so different, you and I. We all have no choices. If I wasn't more likely to kill myself than be unemployed, I just would be unemployed, and that would be a different thing to live through.

We're always going to be valued for our ability to work as much as an imaginary non-disabled person who even people without disabilities are killing themselves trying to become, especially poor people. Employment, or even just volunteer work (which sounds inspiring but doesn't help you get food or a place to live) is set up as this glamorous and touchy-feely goal for disabled people. It will give us a feeling of purpose.

I'm here to tell you there is no dignity in work. Work does not give life value. Disabled people who don't work don't have wasted lives--just very scary, miserable ones, because the world wants it that way.