Last week, Rachel Cohen-Rotenberg of Journeys with Autism wrote a post on visibility and human worth in the disability community, which discussed the overrated emphasis on achievements within a disability context, whereby people with severe disabilities or their carers/parents are ignored or outrightly silenced. Today, guestposter Claire posted about “disability norm” and some other problems with the social model of disability as it applies to people with severe disabilities.
I am not as severely disabled as Claire’s daughter, but even I can relate to some of the problems Claire and Rachel highlight in their posts. Claire writes:
The fact of the matter is that my daughter’s needs are not supported by, nor even reflected in, Disability Norm. Because her inhibitory functions were destroyed by the stroke, she can’t stand overstimulation of any sort, be it physical or emotional. She needs to be “segregated,” to an extent, in order to be most comfortable and to function optimally. Full-inclusionary practices are at best uncomfortable and at worst unsafe. Ideological activists scream that there is nothing in between complete seclusion and full inclusion. I see many realistic options in between.
There I can relate. I have lived in the community and lived in an institution, and, though I never consciosuly chose an institution over community life, I am deciding to live in an institution for the next couple of years at least. I like the quietness and safety of institution grounds (except when there’s construction going on!). I have a need for 24-hour care some of the time – unlike Claire’s daughter, I don’t literally need 24-hour supervision, but I need someone close at any moment of the day. On the other hand, I want to have some connectedness with the “real world”, but to be honest, not because it is the non-disabled world, but because I want to be connected to people I love. You might say that, actually, I should be able to get community-based supports that suit my needs while for example living with my boyfriend. This may be what society should be like, but as long as it isn’t, is the burden on me, or on Claire and her daughter, to prove I or she can live in an inadequate community setting in order to be “allowed” teh care we need?
After all, most community living activists do not claim that people should be allowed to live in low-stimulation areas, with specialized medical equipment, and 24-hour supervision, for example, within the community. In fact, most community living activists do not advocate for people who have relatively frequent meltdowns, like me, to live in the community. They may theoretically think so, but in practice it all boils down to how cost-effective community living would be. Well, what if, in cases like mine or certainly Claire’s daughter’s, it is not? I have always advocated for disabled people’s right to live in an environment they choose, and that may be segregated for some.