Listening to the interview helped me piece together a pattern I'd only half perceived before, which is the technoableism suffusing eye care in the US. If you wear glasses you've already experienced this but may not have noticed because it's so fully normalized. Your optometrist does not usually discuss your options for living life without corrective lenses. The typical choices in front of you are "glasses, contact lenses, or both?" and "which is clearer, this one or this other one?"

In other words the unspoken assumption is that you have a problem that needs to be fixed and it can be with a piece of technology. In this way of looking at it, you only need to decide which technology option you want and optimize it to your specific needs.

They're called "corrective lenses". It's right there in the name.

Isn't this harmless, though? What's the problem exactly? Glasses and contact lenses help a lot of people! Yes, it's true, and don't misunderstand; I'm not saying people shouldn't wear glasses. However, things get more sinister if your vision, like mine, cannot be corrected with lenses (1). The same mentality is there: we'll do some tests, figure out a technology that'll fix your problem as well as it can be fixed, and send you on your way. No technology we currently know of will work? No problem, let's get you into some clinical trials, where you'll be a test subject for the latest technological innovations, one of which may help (fix) you.

I've lost track of how many times I've been asked about whether I'm exploring clinical trials or been given materials to guide me in getting into one. I think the folks asking, and the doctors I've had, are caring and well-meaning people. But they're steeped in this. This is how care works, to them. That's where I think the technoableism manifests in this realm (that's where I first perceived it at least).

In reality, "have you explored clinical trials?" is code for "we don't know what to do for you but it's too uncomfortable to say so". It's the pit you land in after bouncing left too many times while falling through the medical establishment's Plinko board. Realistically, these trials are like buying a lottery ticket. In my case, a $3,000 lottery ticket. $3,000 is roughly the cost of the genetic test I'd need to learn enough about my condition to even be considered for such a trial, a cost I've been informed I'd have to pay out of pocket. There's no guarantee the test would reveal anything useful. There's no guarantee there are or ever will be any clinical trials about the specific condition I have. If there is an ongoing clinical trial I qualify for, there's no guarantee they'd accept me into it. There's no guarantee the trial would produce anything that would improve my vision. In essence, "have you explored clinical trials?" translates to "do you have $3,000 and a whole lot of time to throw at a slim chance?".

No, I don't.

Since saying "no" to that path, I've largely been on my own to figure out how to live with very limited vision. There are supports, yes, but I have to find those myself. There are options like remote work, yes, but I have to warp my life to fit into the shapes that make those options workable, and they are always under threat of being negated.

This society is structured to treat what I am as a problem that needs to be solved with technology, but when it fails to provide a technology solution to the problem it tells me I am, it abandons me to fend for myself. That's what's sinister. I used a lot of "I" and "me" because I was sharing a personal anecdote, but there are tens of millions of people in the US in similarly-shaped boats.

Anyway, thanks Mark and thanks Ashley! Very thought provoking.

#lowvision #accessibility #technology #technoableism #ableism

(1) The situation also gets more sinister if you don't have the means to pay for the technology solutions on offer, or if your ability to visit an optometrist is limited, or ... I chose to focus on just the one dimension I have immediate direct experience with, but there are lots of mechanisms via which people are abandoned.