This post is not, in any way at all, meant to shame anyone from the community. The essence of the following has chased me for a lifetime, and after watching people talk about disability in a documentary about SCI it hit me in words.
This post is for those of you who have a congenital physical disability & use an aid, but also are fully independent - drive, gainfully employed, travel, don’t need hired help to care for your daily needs, are in a relationship status you want to be in…
Do you ever feel like you don’t relate to the wider disabled community, but want to?
It seems that in 98% of posts, shows, discussions, it’s always about how hard everything is for us. Newly disabled people or those with wildly rare and traumatic disabilities have traditionally gotten the most airtime (TLC I’m looking at you). So, for example, AB’s watching or reading get introduced to disabled people via someone comparing being once able bodied to now being para or quad. With all the comments to go with it. Or someone talking about having half a face, and what life is like with that. All important things to talk about, but that’s not my point here.
Where I guess it’s getting me is, there is so much disability variation in the community. I long to connect with people with my variation. I also long to be seen in society as who I really am, instead of being seen as more disabled than I am, based on social media & general media exposure.
I can’t be the only one who considers myself disabled mainly around the fact I need a wheelchair. Where are the people from our community living like this? Maybe they don’t really identify or post online?
I love and value my independence and fearlessness. I’m proud of it. Every heavy door I open, every 2,000 mile road trip I drive, every meal I cook, every kayak trip I take, the respect I get at work for tackling a huge client challenge instead of “overcoming my disability”🙄. And yet at the exact same time I love, respect and value the disabled people who came before me. Who forged paths that allow me to do things like cross the fucking street (curb cuts), or attend concerts in the mosh pit (ADA created a lot of worry about us being discriminated against and I can use this to ensure I’m allowed to forgo ADA seating and instead get on the rail with the rest of them😉). I also realize my more physically disabled pioneers are the reason that one day if things become more difficult for me, I can seek the additional care I need.
I love my community but more often than not, I don’t relate to it.
Adding to this isolation, I seem to again be one of the few that hates strangers asking me if I need help (I have a voice and can ask for it when needed!) or people staring in public. I do not feel we are obliged to educate anyone about our condition while we are going about our business in the world. I think it’s truly acceptable for me to react to such nonsense the way an AB would. I’ve studied how AB’s react when weird public things happen to them and this is how I communicate when all this shit goes down. It works well.
Basically, I just want to live like the normal person I feel I am - because wheelchair access needs aside, I truly do live ‘normally’. The main thing that reminds me I’m in a wheelchair is others... I don’t think I’ve ever heard another crip say this 😢
It seems instead most of the community wants to either post about the opposite stuff, or if I comment anything close to what I’ve written today I’m told “it’s rude” or “that’s nice for you that you live this way” type of reply.
This is why I’m asking: where my peoples at?? Are you out there?? Those who are disabled but whose disability mainly limits walking? Who sees their disability struggle in life being attitudes and imposition from the public? Who long to be seen at their level of disability and not just lumped into a category because it’s most commonly portrayed? …And lastly: who seem to provoke anger from the community because we speak about this reality.