Why I Can’t Live Independently

I was asked the question again, on a Facebook group for parents of bliknd/autistic children (where I share my perspective as a blind/autistic adult). When people realize I’m above-average intelligent and verbal, they often ask why I can’t live independently. That is, unless they, like my therapist, assume that no blind person can. She originally had it written into my treatment plan that, if I had not been blind, I would’ve been able to live independently with outpatient support. I had this removed because it quite likely would’ve impacted my funding.

Honestly, it is quite a painful question for me. I have somewhat suppressed the memories of the time when I did live on my own, and don’t really like to think of that time. Then again, I have to if I want to clarify my support needs.

I couldn’t live on my own back in 2007, when I tried, because I had terrible meltdowns in which I’d become self-injurious and aggressive, and I wandered. I also couldn’t do daily living tasks because I needed very clear instructions and needed lots of one-on-one instruction. I lived in an independence training home prior to this and got lots of instruction there, but I got overwhelmed very easily and had meltdowns etc. then. I was more or less kicked out of the independence training home because of my meltdowns.

In addition, I have mild motor deficits. I don’t know whether this is the cause of my inability to perform simple daily living tasks like putting a topping on my bread, but I can’t do these things. My gross motor skills are better, so I can technically operate a vacuum cleaner for example, but I get overwhelmed by the noise so much that I either forget where I was vacuuming or shut down completely. Vacuuming and sweeping are not the problem, as blind people in the Netherlands generally get fudning for a housekeeper to do these tasks. Unless, that is, you have a partner who is non-disalbed, but then again my husband has to do all the cleaning now that he lives alone, too. Same for cooking, so these are not a problem.

It is really hard to put into words what went wrong when I lived on my own. Yeah, I had meltdowns and wandered, but, as an intelligent person, can’t I just control those behaviors? With medication (including a high dose of an antipsychotic), these behaviors have become less frequent, but other than that, I’ve found nothing that helped me. The meltdowns and wandering still occur regularly enough that it’d be a safety issue if I lived independently again. Besides, the fact that I have 24/7 support available should I need it now likely causes the meltdowns to be less frequent. I have learned to delay my need for assistance, but still ultimately need a good deal of assistance during the day. Besides, in cases of (perceived) emergency, I just need to be able to reach someone. And you might say my perception of emergencies is screwed, but when I’m sensorially and/or cognitively overloaded, I can’t make that judgment. Oh, did I mention I can’t get myself out of my husband’s apartment safely using the stairs, which I’ll need to in emergency cases? I could likely learn this, but I’d need a fair amount of instruction. I do know the stairs and don’t know whether I could walk them without falling if I didn’t get assistance. For those who’ve seen me walk the stairs at home fine, these are firstly different (indoor) stairs, and secondly my motor deficits have gotten slightly worse.

When I write this, I can hear the judgment of certain people, including possibly certain readers, in my mind. Some people may want to minimize my support needs because they are in denial. Others mighht want to discredit my opinions, for I am allegedly not like their child. I was going to write about all the unsafe situations I’ve been in (and not just unsafe as perceived by me) because of lack of support, but I think it’s pointless. It hurts too bad to think of these, and most likely people aren’t going to change their perception of me unless they genuinely want to, in which case the above paragraphs should suffice.

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