Episode 36: Skeletons In The Closet

TRANSCRIPT OF “SKELETONS IN THE CLOSET”

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MALE VO [00:03]
This is Bad Attitudes.

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LAURA [00:20]
Hello friends and strangers! Welcome to another episode of Bad Attitudes: An Uninspiring Podcast about Disability. I’m your host, Laura.

Know what pisses me off? Everything. Just, like, just everything.

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As always, I want to remind you that disability is not a monolith. My experience as a disabled person is going to be different from the experiences of other disabled people. I am one voice for the disabled community but I am not the only voice.

Okay, I was being facetious before when I said everything pisses me off. Not EVERYTHING pisses me off. Lots of things make me happy. Puppies. Puppies make me very happy. The Backstreet Boys. They make me SO happy. The Backstreet Boys playing with puppies? DELIRIOUSLY HAPPY!

But this isn’t a podcast about the things that make me happy, because those things don’t need to be changed. Puppies are pretty fucking perfect. The only thing that needs to be changed about puppies is that there are people who don’t like them. 

I focus on things that piss me off, that are annoying, that are frustrating, because they NEED TO BE CHANGED. Attitudes need to be changed. Behaviors need to be changed. And nothing can be changed until the fact that change is needed is acknowledged.

That being said, here’s what’s got me going this time: Exoskeletons. Lemme ‘splain. In the first place, I don’t know if they’re actually CALLED exoskeletons, but I’ve seen them referred to as such and I think the name fits as well as any, so that’s what I’m going to call them. Exoskeletons are machines that are attached to the bodies of individuals who cannot walk — usually patients with spinal cord injuries — and through mechanical and technological means, they make it possible for these patients to walk.

It’s not super important to understand how they work beyond the basics. The issue is not with how they work; the issue is the way they are venerated in the media and among non-disabled people.

Any time a company announces a device like an exoskeleton, the media lauds the company’s innovation. They are celebrated for creating something that will, quote, “change the lives” of disabled people.

But, exoskeletons are unlikely to change disabled lives. In the first place, they are not widely available, and if they are, they only work for a particular subset of disabled people, usually people with SCIs. Someone like me, who cannot walk due to a genetic disability, is unlikely to see any benefits or even to be able to use the device. 

Even if they are available, the cost is going to be exceedingly prohibitive. (And remember that a large number of disabled people live at or below poverty level.) A custom wheelchair can cost as much as a used car. How much do you think they would charge for something that turns you into a human Transformer? And medical insurance is beyond unlikely to cover it because it’s not medically necessary. 

I think that’s the rub. Exoskeletons are NOT medically necessary. Any medicinal benefit they provide is very small and likely already achieved through other therapeutic means. But any promotion of them leans heavily on the idea of how much this will improve users’ life and health. (Obviously, because I know how promotion works.)

When scientists and inventors set out to create a device like an exoskeleton, they are trying to solve a problem. But there is a problem with WHICH problem they are trying to solve.

The problem they are TRYING to solve is that people cannot walk. Except that’s not actually a problem. On the individual level, someone might find it problematic to be unable to walk. But on a societal level, the fact that some people move through the world in ways other than upright on two legs is NOT problematic. It doesn’t inhibit society or its progress in any way.

I’ve said it before, walking is overrated. Toddlers can do it. What’s so impressive? 

The problem is that the world is not accessible to people who do not walk. That is the problem that needs to be addressed: Making the world more accommodating and accessible to people who move through the world in ways OTHER than walking. But instead of putting focus on the arena of accessibility, media outlets shine spotlights on companies making products like exoskeletons, perpetuating the idea that the only viable way to move through the world is upright on two legs.

Whenever I see an article or a post about things like this, I always feel the need to comment and explain that from the perspective of the disabled community, these devices are not the God-granted miracles non-disabled people seem to think that they are. We have not been waiting our whole lives for them. They are not going to solve all, or even some, of our problems.

Then I am accused of being anti-science, anti-techology, anti-progress. In the most recent instance, someone even said I sounded like people who want to defund NASA. 

I never say that I think this type of innovation doesn’t have value. I never say that companies should stop investing in these kind of devices. My entire point is that the more pressing issue is the lack of accessibility, and improving accessibility should not be ignored in favor of a device that’s only going to be beneficial to a super small number of people. Because accessibility isn’t just for disabled people. Accessibility is for everyone. By making our environments more accessible, we make them more livable for all types of people, regardless of their level of ability.

So, no, I have no interest in defunding NASA. I am in favor of defunding billionaires flying to space on their penis rockets for no reason other than to flaunt their wealth. I mean, surely Jeff Bezos, Richard Branson, and Elon Musk can think of better things to do with their money than using it as a technologically advanced pissing contest. And constantly presenting devices like exoskeletons as technological marvels while ignoring the very real issue of accessibility is not unlike riding to space in a dick when your money could be put to better use here on earth.

As another example, I truly admired Christopher Reeve for his disability activism following his injury. Although his accident was tragic, it felt like a boon to have someone so influential speaking for the disabled community. However, it always bothered me how all of his organization’s research felt focused on and much of what he talked about in interviews was regaining the ability to walk after an SCI. And while I understand why that would have been his ultimate personal goal, and likely the ultimate goal of the research, I unfortunately feel like he missed a lot of opportunities to speak out about issues facing the disabled community that weren’t centered on cure rhetoric, and it makes me sad. Using his celebrity to bring those issues — like accessibility — to the forefront could have moved the disability rights movement much farther forward.

A lot of people want to know who says that society is not focusing on accessibility in addition to funding projects like exoskeletons? I DO! I, a lifelong disabled person, can tell you that accessibility is not a priority for anyone not directly impacted. I have spent my life watching as non-disabled people park illegally in accessible spaces, park in front of and on top of curb cuts, block entrances and interiors of stores with merchandise, and then have the gall to act surprised when the lack of accessibility is called into question. If you see a non-disabled person advocating for more accessibility, they are the exception, not the rule.

Exoskeletons are a tool of cure rhetoric, the ideas, the conversations, and the behavior that exemplifies the idea that the only good disabled person is one who is as far from disabled as possible. Non-disabled people expect that disabled people want to be “fixed.” And while that may be true to an extent (that’s another episode altogether), the reality is we know we are not the problem.

Expecting me to be excited by an exoskeleton but not making an effort to make the world more accommodating to me as I am is basically saying I am not worthwhile because I can’t walk. It’s saying that you are not interested in expanding your worldview, but you are interested in attempting to cram me into a little box labeled “normal” because that is all your tiny brain can comprehend.

It is completely possible to focus on both increasing and improving accessibility AND researching and developing devices like exoskeletons. And if I saw that being done, I would have much less issue with those devices in the first place. I do believe priority should be given to increasing accessibility. Those exoskeletons MIGHT help a few people in a few years or a few decades, but improved accessibility helps everyone RIGHT NOW. 

Exoskeletons are not a miracle device. They might help someone stand for a short period of time, perhaps even walk short distances, but the logisitics make them cumbersome, at best. Imagine trying to wear it in the car. Imagine trying to transport it without wearing it. Imagine trying to do anything other than standing around while wearing it. The practical applications are extremely limited.

And yes, I know that’s how research works. It takes time to develop technology like exoskeletons and bring them to a point where they can be used by the average person. But it’s not about the practical applications or about how long these devices take to develop. It’s that they are being pushed to the almost complete exclusion of making accessibility a priority.

Disabled people don’t need miracle technology. We need practical solutions for problems we are facing right now. Sometimes those solutions are technological and sometimes they can seem miraculous. I know many disabled people who have benefitted from technologies, but they had broad applications to many types of disabled people, and often generally benefitted non-disabled people as well. And most of them did not perpetuate the idea that being unable to walk is unacceptable.

I’m not asking you to not celebrate innovation. I’m asking you to temper that celebration by asking yourselves questions about the impact of said innovations. Who does it help? Does it solve a real problem? Is it just ableism dressed up like a Transformer?

Don’t take these types of innovations at face value. There’s often more than meets the eye.

Thanks for listening and I’ll talk to you in the next one.

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