Today is August 22, the day that I “celebrate” my entry into the world of disability services each year, because on this day in 2005, I started blindness rehab. A recurrent issue in my experiences with the disability system is, of course, the question of whether disability services made me better or worse. This year, contrary to in 2006, the question is not whether I came out better or worse, but whether the disability service system is at fault.
“At fault” is a black-or-white term, meaning that I might’ve come out better if I hadn’t gone through all these disability services, or I might’ve come out even worse than I’m now. My worst case scenario of what 2005 would’ve been like if I had gone to Nijmegen right away, involves psychiatric hospitalization, and from that point on, it would’ve been speculative what the staff would be doing with me. I might’ve come out better – the “if we’d known then” type of thinking from training home staff -, or I might’ve come out worse and become one of those autistic adults never getting properly diagnosed or supported because the entire mental health system is clueless unless you specifically ask about it (which the psychologist the training home staff consulted, did).
The other scenario, the one my parents like to believe, involves me doing all great and never needing any support at all beyond that deemed “normal” for the blind (and then we have to debate whether housekeeping assistance or adaptive transportation are “normal” – most of my blind friends think they are, but I’d never thought of getting them in 2005). English is an easier subject to major in than linguistics, so I’m pretty sure there would’ve been fewer barriers to my accessing the curriculum. However, that is not something anyone pushed me into: I was the first to say that I didn’t like English as a major anymore, and the majors staff have pushed me into, mostly are more accessible than linguistics turned out to be. Furthermore, this would not have changed my situation with regard to my inability to cook, travel safely or manage my paperwork – in fact, my skills were a lot worse.
However, actually, I have no way to compare my current situation to the one I might’ve ended up in if I’d not started becoming involved with disability supports. After all, this is the way it is and I can’t turn back time. With the actual claim my parents make about the problems with my having been surrounded by disability service people, this is however not too relevant: they say the disability service people ruined my self-esteem, thereby causing me to feel incapable of making it in college or in independent living.
Besides the question of what self-esteem really is – the belief that you can do many practical things for yourself, the belief in your ability to make your own decisions, a positive feeling of self-worth, etc. -, that would all lead to different answers of whether my self-esteem has been ruined – and, was it all that good to begin with anyway? -, there is the question of how much part the disability service system, or the broader care system, has had in this. After all, no-one actually said that I can’t go to university. The most skeptical person at training home, who once sent me a Sonneheerdt (vocational college for the blind) newsletter, pretty soon knew that she was alone in believing I could not go to college, especially after I started at Saxion. The plan had all been laid out quite clearly by the summer of 2006 and no-one was openly questioning it or even making doubtful comments like “How are you going to do ___?” after the end of 2006. In fact, all people were relatively optimistic and confident that I’d meet up to the standards of the follow-up living place – except for me.
Then maybe the rehab center did all the wrong to me, because apparently my self-esteem had already been destroyed. Well, no, they did not. In fact, everyone knew from the start that I was going to transfer to college and independent living by 2006, and no-one ever questioned those plans. They did realize that I’d need some more real-life training, but I’d get that at training home – and for clarity’s sake, I was the one who decided to delay college a year, without any staff member proposing I do.
So, is it that I’m just a lazy, insecure, little baby who got all the good kicks in the ass until she eventually got her way by making some suicidal threat, and is the only person at fault the psychiatrist who took it seriously? Should I be pushed and pulled through life like I’m a wheelbarrow forever, because otherwise I’ll become one of those poor, disabled people who believe that the world owes them a living? Well, goal-setting is not a bad thing, if it is a goal that the person (ie. me) agrees to. The current aim for me is to go to a supported living place called Glasnost, and in a way I’m glad that the people here haven’t given up on it despite my continuous nagging about my not meeting the criteria. Okay, there are more alternatives in which I will have an equal level of independence and that are less strict on admission criteria, so I do have a problem with them sticking to one place only, but it is not that I despise them wanting me to go into supported living at all. What I do have a problem with, and what ruins my self-esteem actually, is something not just care people do, but my parents all the same: setting long-term goals without short-term objectives to get to that goal. I eventually did realize that one short-term objective could be to at least get something to do during the day – even though it’s not something that Glasnost will accept -, if the long-term goal is 32 hours a week of outside day activity, so I applied to Open University. With regard to the other goals that going to Glasnost implies, however, I have no clue how to set short-term objectives, let alone how to reach them – and I estimate that without help it’ll take me years to find out.
This attitude is pretty common among care professionals, and it’s probably all the more common among care professionals who know they will be dealing with you temporarily. I encoutered this quite openly at the rehab center, where, whenever I raised a concern about not reaching my rehabilitation goals, my counselor came up with: “But aren’t you going to go to ‘De Boomgaard’?” I solved this problem by not making my definite decision to go to training home till a week before finishing my rehab program, and by insisting that I wasn’t there but at the rehab center now so we should stick to the goals and objectives I had for rehab. I cannot do this at this point, not just because I already applied at Glasnost, but also because my current placement is an admission ward and really doesn’t care all that much about resocialization goals. That’s what the resocialization ward is for, but then if only I heard the social worker and nurses say: “But you’ll go to reso!” Then it would make sense, except for the goal that I manage my behavior enough to do without a time-out policy – which I think I do, but the staff are skeptical -, because if I fail on that one, reso cannot put me into time-out. Unfortunately, it’s not what the people say. “But you’ll go to Glasnost!” is what they exclaim. That is exactly the same as if someone had told me in 2005, when I asked about learning to cook: “But you’ll go to Nijmegen, right?”
It is pretty appealing for a service agency to pass an issue on to the next one. After all, it means that there is no need for creative solution-finding when “standardized” strategies fail, no need for periodic evaluations that determine intervention strategies – I didn’t get a periodic evaluation at rehab even though I should’ve gotten one -, no need to take a real, hard look at the goals and determine their realism, and, ultimately, for the disabled person, no need to progress. Long-term goals, with neither short-term objectives nor intervention strategies, aren’t going to drag me out of my comfort zone – in fact, they push me further into it. Of course I will be homeless if Glasnost isn’t going to accept me, but I’d much rather spend the time that I’m still waiting for Glasnost’s waiting list to end by reading Oliver Sacks or playing cards than by worrying about the future, if I have no clue how to change that future anyway. Because I know that I’d much rather not become homeless at all, I used to keep pushing for short-term objectives and strategies, but at one point I’d heard the classic “We don’t specialize in autism, wait till you’re at Glasnost,” so often that I gave up and retreated into Oliver Sacks’ books. I’m now most often arguing about what will happen if Glasnost turns me down, but the answer’s still the same. It’s not that I want to be homeless, but just putting up a bar of expectations somewhere on a far-away star and telling me to reach for it, isn’t going to give me a space shuttle, either.
