Last week, there was a discussion between my doctor, the ward social worker, and a number of autism professionals. The aim was explained to me as finding common ground within the autism and blindness field. As it turned out, they selected a follow-up option for me and have been pushing me to “look on the positive side” and “wait till you’ve looked it up online (last Saturday), till you’ve called the woman in charge there (last Monday), till you’ve made a visit (planned for March 7)”, despite some well-grounded and in my opinion very important downsides of the place. I assume that if I make the March 7 visit, the woman in charge (and the ward social worker, cause she’ll accompany me) will push me to go for an admission interview – cause, as soon as she picked up the phone, the woman in charge invited me to visit, while I first wanted more info.
The most important downside is the fact that this place – a living facility for high-functioning autistics -, is yet another training home. And let this just be one of the very few variables about living arrangements about which I’m pretty much unable and unwilling to compromise.
When I make it clear to staff here that I’m not going to go into another training place, I get many reactions – other than the catch-all phrases “Look on the positive side” and “Wait till you’ve made the visit” – that are all variations on a theme. Here they are, with my comebacks.
- “You went to training home to learn to live independently, and you failed, so don’t you need more training?” Firstly, I didn’t fail completely – I still have all the skills I learned at training home, only I wasn’t able to apply them in a particular environment. Besides, this question assumes that everyone’s ultimate goal should be independent living – it’s not mine anymore.
- “Would you accept a living place if the people there could help you to eventually reach fully independent living?” I answered that one already – no.
- “You’ve always worked on blindness, but you’re also autistic, so don’t you need to work on autism now?” Firstly, the people at training home had quite a bit of expertise in both blindness and autism (in fact, they were the first to recognize my autism), so surely have I worked on autism. Secondly, I am always both blind and autistic (and all of my other qualities), so if you teach me a certain skill, it doesn’t matter what your area of expertise is as long as I learn the skill. And thirdly, there isn’t such a thing as “working on autism”, only working to improve certain skills and behaviors (where the problem can be explained by autism).
- “You may have been able to carry out your household duties, but you failed in your interactions with the many different people you’d encounter at university, so you might work on that.” Well, I really don’t understand that one at all: no-one ever told me I had poor social interaction skills which had to do with my not having learned context-based social rules, and it was most certainly not a factor in my falling apart.
- “But what about the meltdowns, don’t you want to unlearn those?” Of course, but do I need to be in an entirely therapeutic environment for that? I don’t think so (and if the professionals do, how would they have acted if I hadn’t been hospitalized?). Besides, once I’ve unlearned the meltdowns, you’re likely to come back to me with: “But what about the hair twirling, don’t you want to unlearn that?” That way, it never ends and I’ll be spending the rest of my life in training homes unlearning this and learning that.
What all these reactions have in common, to various degrees, is that they assume that, as long as you haven’t conformed to a particular person’s (subjective!) standard of achievement or apparent normalcy, you need to devote your life to conforming to that standard. Well, there are many other things – an education, politics, disability rights, my friends, to name a few – that I’d much rather devote my life to now.
These days, I’m sometimes happy that I wasn’t diagnosed with autism as a child. Usually, I’m sad about this, because an early diagnosis would’ve gotten me access to appropriate resources at a much earlier age and I wouldn’t have had to go through late childhood and adolescence knowing there was something “different” about me (other than blindness) but not knowing what, and feeling left out of everything. But the one big advantage of a late diagnosis is that I haven’t been in any intensive intervention programs at a young age, and, hence, had time left – outside of the not-so-intensive intervention programs I was in because of my blindness – to be a child. A consequence that followed this effect, was that I, having had time to be a child, had time to participate in school and other activities in which other children (like my non-disabled sister) participated, and, hence, had the opportunity to find pride in my childhood achievements and accomplishments. Now, all I can be proud of, is having gotten privilege 3 or not having had a meltdown for so long. This is not exactly what I dreamt of taking pride in at age 21.
“But,” you will say, especially if you happen to be psychiatric or developmental disabilities staff, “you are impaired (or worse yet, sick). Take pride in your own little achievements and don’t compare yourself to the non-disabled too much.” Well, you would be right if I wanted to drive, but I didn’t say that. What you’d be doing with such a remark – and what the nurses did with their comments on my refusal to go to yet another training place -, is to divide the consequences of my autism and blindness into those that fall within the scope of disability – dis-enablement by an unsuitable society – and which fall within the scope of impairment – intrinsic inability that is incompatible with a meaningful life within society -, and to decide for me which of my non-disabled peers’ life goals should be a priority for me, and which should not. Of course, if the nurses on my ward or my doctor get to read this, they’ll tell me that they aren’t making any decisions for me (yet) and that my autonomy matters to them and more of the like, but at the same time, I hear my doctor say “structure” or “safety” and I cringe, because I know we don’t have the same definitions of these.