Despite the tone of the title, I am not conducting formal research or writing a paper or anything, I'm just curious to hear from people in different cultures. I am autistic, and I do not mean anything I say here to be inflammatory, bigoted, or ignorant, and if I come off as so please tell me.
I've just been thinking for a while about how some of the societal barriers and burdens we as disabled people face in "Western" culture seem to be intertwined with specific aspects of our culture/s.
The easiest example is the stigma surrounding adult children living with their parents. It's my understanding that in many cultures this is normal, even in "usual" circumstances where the adult children are not disabled. Of course, supposedly the main reason we in America see this as wrong or unhealthy is the idea of the "freeloading basement-dweller" -- that adults who live with their parents are usually dropouts, unemployed, unambitious, too sheltered, lazy, or stupid to thrive in "the real world", by which we mean "independently." And sometimes, some of these things are true to some extent. But whether they are true or not and whether or not these flaws are as damning as our society makes them out to be, this seems to bleed over into the public view of disabled people living with their parents. There is such a pervasive culture of "productivity = money = self-worth" that it seems common for people to look down on anyone who doesn't work (or doesn't work full-time), and/or who doesn't live alone or as part of a nuclear family unit.
From what I see around me, in my life, and online, it is not at all uncommon for disabled people, especially younger disabled people, to be accused of faking their disability to get a "free ride" -- by everyone from strangers, doctors, the government, to their own supposed friends and family. And sadly, even within the disability community itself, though I like to think it's much less common among us than in the general population. Even those who don't necessarily think we're all taking undeserved resources and services, many of them pity us instead, and not just because of the first-level impacts of our disabilities such as pain, mobility difficulty, and difficulty participating in the social/leisure activities of our choice, but also because they assume we must feel such guilt for burdening our loved ones, and must lack a sense of self or accomplishment because we can't be "productive". (Not at all disregarding or minimizing the experience of disabled people who do work, neither those who want to or those who are forced to. We know it translates to that side too, in the form of inspiration porn.)
The fact that we have [so many] nursing homes, group homes and other institutions for the elderly and disabled also says a lot about our culture, though most of us grow up thinking this is normal. Even the discomfort it causes is normalized. I remember visiting my great-grandma in a nursing home as a young child, being upset by the smells, the sounds, the people in wheelchairs littering the halls looking nearly comatose, and the intense guilt from admitting to myself that I did not want to be there but that it was our duty as family to visit. That feeling that this wasn't the same grandma I knew, not the same one I visited in her home, she was both different and apart now, almost as if she were a fixture of the nursing home and not a person any longer. Any thoughts that the entire system was wrong and questions as to why grandma couldn't live with one of us were eventually forgotten as I grew up and all of this was normalized. And I know, a lot of this is also tied to our work culture and capitalism, that there are families who would keep their elderly and disabled at home but can't afford to. But it also gives an easy out for anyone who really doesn't want to care for them -- and growing up in the culture that I have, I can't exactly blame them either. It's just not what we do.
I guess this is on my mind a lot because I do feel those things; I felt them before becoming disabled because I was a "bright and vivacious" child whom everyone expected to go far, and my life went off track in my teens and 20s. And I feel them even more now that I'm 35, have spent years slowly crawling out of that hole and realigning my life, and right at the moment where I had the most hope for the future and most pride in myself, I became fully disabled.
I think it should be on every American's mind, now more than ever, given that disability rights, protections, and supports are being eroded again (and still had a long way to go before these setbacks). The federal government recently announced that the Americans with Disabilities Act cannot be enforced by the federal or state governments, despite the fact that is HAS been enforced (not perfectly) for decades. The ADA was passed the year I was born. I have never known an America without the ADA and without progress being made on it, and that realization frightens me. I only have history books to tell me how much worse it was before.
The recent announcement wasn't speaking broadly of the whole ADA -- though I think it is imperative that we all understand they WILL apply it to the whole thing if they gain ground on this first one -- they were talking specifically about the Olmstead decision, the supreme court case that established that states must make every effort to ensure disabled people can remain living in their community, in their homes, before deeming that they need to be institutionalized. This became even better enforced in my state of Colorado just over the past few years, as they put systems in place to make in-home care more accessible to disabled people.
But the truly upsetting part is that it's not really a surprise the government can reel this back with minimal outcry from the general population. Because it was not yet fully integrated into our culture, not completely the norm, not universally accepted. My own family, who consider themselves liberal, progressive, and vote for human rights, flipped out when I first suggested that I might utilize in-home care (homemaking, not nursing) while living with them. When things calmed down they admitted it was in part because they felt like I was saying they had failed me and should be able to meet all my needs -- to which I of course responded that that wasn't true, and of course I understand that they work full time and have full lives besides and they can't meet all of my needs and I don't expect them to. But still, I will never forget the moment when my stepdad said "If you need that much care, maybe you should be in a group home." Because that's just the go-to in our culture. The IRONY that I was wanting to use services that were in place SPECIFICALLY to help keep people like me OUT of institutions, and this made my family suggest I be institutionalized. I need some help with some ADLs, not nearly enough for a group home to be the best fit. And I hear this kind of thing all the time from other disabled people, whether it be about institutions or mobility aids or community resources.
This got way longer than I intended, as usual, and ended up being more about myself than I intended, but my intention was to describe a situation I know many can relate to.
I'm sure it's probably normal in any culture to feel some amount of guilt, shame, and grief from being disabled. But I do have to wonder, are those feelings lessened for people who are part of a culture or even a family who believes in taking care of the whole family, keeping the family together, and avoiding institutionalizing the elderly and disabled? Is there less shame around not being "independent" and "productive"?
These aspects of disability are such a large part of my experience, I often feel I have to devote so much energy to dispelling these notions (to myself or to others) that I hardly have any left over to spend on ACTUALLY managing my disability and living well. I am working on focusing more on myself and letting judgments bounce off me, but that is also work that I must do in order to live with disability.