A lot of disabled people struggle far more because of society. Lack of accessibility, the standard education system not providing the assistance or education method that some people need to learn (disabled or otherwise), ableist laws, ableism from random people, inspiration p*rn creating the ideology that disabled people aren’t allowed to complain, etc etc etc. I bet every disabled person in the world has faced at least one of these things. I don’t know your neighbor’s son. I know that I believe disabled people’s inability to do some things stems from the lack of accommodations that are available to us. But I also know people aren’t independent. Not a single one of us. It’s impossible. And sometimes, disabled people have different things that they need to depend on others for that abled people can do easily by themselves.
Have you ever seen those things that help people put on socks without bending down? Something that any abled and/or young person could do, some older folks and some disabled people need a little machine like that to do it. Everyone needs different accommodations, and sometimes that accommodation is a person that can help them or do something for them. That’s totally fine. But they need to be available, and that simply doesn’t exist in most places in the world
Oh yeah I've seen those, and for the issue with the cream on his back I was thinking of a plain old "back creamer" (no idea what you call them in English) that elderly people often use as well... and frankly, I could use too because, heck, I'm not even mobile enough to cream my back in the middle.
So yeah, lack of tools and things is definitely a factor, and probably the easiest to solve. And of course you're right that nobody is truly independent (I said 'more independent'). We all need help and ask experts, but that's where it starts.
When I have a bureaucratic or legal issue, I know where to look and how to ask. I am confident that I can say "Look, I have this problem. I need help with it. Please help me," and that I will, in most cases, get the assistance I need.
But I thought maybe that's already where it starts, that people with disabilities aren't taught those things well enough and aren't given the confidence to a) ask for what they need and want and b) also have their boundaries respected. I mean that when I ask for help, nobody will take over the whole thing for me and be patronising about it (unless I, a woman, go and get my car fixed 😝 Isn't sexism also sometimes a form of 'ableism'?) and people will know that I asked for this specific thing and not a hundred others as well.
I know his mom also told me about how difficult it is to get the right support from the government. He works at a disabled workshop, a full-time job as far as I know, and he earns so little money because he gets disability support, too. (I think they pay for housing and transportation and stuff) I don't remember any specifics, but she was often talking about how difficult it was, even for her, to tackle all those bureaucratic processes.
And then you hear from other countries where people have a social worker come visit you and help you with everything you may need and are fair and open about it all and treat you as equal.
Interesting that you mention the ideology that disabled people shouldn't complain. I also reject that (like I said, I don't have anything that legally counts as disability, but I have some physical stuff as well as anxiety/depression, and in many ways that's literally disabling). But this is also why I think that worrying about your kid when you learn they have a disability or condition, and feeling guilty about it is a mostly natural, empathetic reaction from a mother.
My mom has a rare form of rheumatism. It started to manifest when she was in her 50s, and she now legally has disability status, too. I'm terrified of it being genetic which I try not to tell her, because she already mentioned she is terrified of having passed it down to me as well. And knowing my mom, she would beat herself up endlessly, entirely illogically, but she would, and I can understand it because I might feel the same? I dunno.
And to me that's what I saw/felt in Shannon there when she mentioned her guilt. It's completely irrational, but of course you don't want your kid to have to struggle with something that affects them negatively. Even if it doesn't diminish their worth as a person, and even if there are tons of other factors that make for a happy, fulfilled life, and so many of the things that come with a disability are manageable. Still, it's not something I'd be happy about and would pick for myself, so why should I be completely unconcerned with my kid having it?
