I’ve been struggling lately because of my experience as an autistic powerchair user. Let’s talk about why. Roll with me for a bit.

So, like, I have some mobility, right? But the problem at a core level is if I want to go somewhere outside my apartment and not hurt or fall, the chair needs to get me from point a to point b.

You wouldn’t think this would complicate things. You would be wrong.

Let’s start with literally leaving my building. My ramp is too steep, and it’s uneven. It’s actually super dangerous to exit and especially enter my building, especially if I’ve also got a dog running around with me.

If my building doesn’t want to pay, my only recourse is to pay

So, that’s already a serious financial barrier, even with the availability of grants, crowdfunding, etc. Literally there’s a price on leaving my house.

Next, let’s try to GO somewhere! Assume we aren’t in a global pandemic (nice, isn’t it?)

My chair is a goddamn blessing bestowed upon me by the community. It’s also true that I found out medical info shortly after getting it that means I could benefit from additional features (specifically tilt and recline). Getting a chair with this feature would be 25k.

Insurance won’t pay for another chair for another five years. So, I’m working with this one for now. That’s ok!

However, if I’m going on metro late at night, I can’t board unless there are lots of people on the train.

This is because my wheels are too small to bridge the gap.

There are ways to try and fight this. They require paperwork, and a lot of legal knowledge. By the time that fight was done, it would probably be five years anyways-and yes, it IS designed to be that exhausting.

So, we’ve established: getting out the door? Probably gonna cost me money.

Getting a chair with my updated info? Costs 1.5 years of rent.

So, if the metro sucks, why not get a taxi?

I can’t fit in a rideshare, and UberWAV costs as much as a standard solo Uber. No, they don’t go all over the DMV, that would be ~ridiculous~. Good luck if you love in Virginia, out of their service area.

Why not get a car?

Well, your standard wheelchair van conversion will run you 25-30k. So, like, as much as the chair I can’t afford.

This is actually one of my long term goals, but I have no idea how or if I’m ever gonna get to it.

Note, this ALSO requires a lot of paperwork, financial knowledge, and insurance and upkeep and registration info.

All of which requires executive function and makes my head spin.

Okay, so getting around outside is either expensive or on Cinderella time. Noted. What about when you get home and sleep?

Well, I would really benefit from position adjusted sleeping-like an adjustable mattress and base.

A decent quality one will run you at least 3-5k.

And again, this requires price comparisons and financial knowledge and contracts.

More executive function.

I’m aware that I am incredibly privileged to have an income. I am privileged to have housing. I’m privileged to have my basic chair.

There’s also an and. The and is that society still makes me, as a disabled person and powerchair user, struggle to do things as basic as sleep.

A lot of this is that the cost of being disabled falls on disabled people. Products that are specifically FOR disabled people and marketed that way generally cost more.

And even something as simple as making a powerchair with big enough wheels for the late metro is over our head

Because the makers of non-custom powerchairs just kind of assume we’re just going around on paved paths like in an infomercial

As an autistic person, I struggle with the amount of social and professional knowledge that goes into any ONE of these things. It’s taken me nearly a year to figure out and have the time and executive function to request a ramp.

How the hell do I do everything else?