I do a lot of talking, both on my public platforms and in the disability advocacy circles I frequent, about visibility for less-visible disabled people. Don’t assume a person isn’t disabled because they don’t “look disabled”! Don’t assume that a person who uses a mobility aid sometimes and not others “doesn’t really need it”! Don’t assume that neurodivergent and intellectually disabled people will act a certain way! My first article for this site, in fact, was about how we shouldn’t automatically assume that wheelchair users can’t walk. I wanted to address the wide range of diverse people that make up the disability community.
But a recent conversation I was trusted enough to be an audience to gave me a different perspective. With all of us out here shouting to be seen, declaring that some wheelchair users can walk, are we drowning out the voices of people saying that some of us can’t? In my eagerness to stop strangers from assuming that I’m “faking” my disability if I stand up to reach something off a shelf, am I contributing to a possible overcorrection – could people instead start demanding to know why other wheelchair users can’t just stand up and help themselves, since they saw me do it?
In the interest of full disclosure, I am aware of my privilege within my own disability communities. I am multiply disabled, both neurodivergent (autism and Tourette syndrome) and physically disabled (due to several chronic issues, I use a wheelchair most of the time and crutches the rest). Still, I am someone with relatively low support needs. I live independently, work full time, and am considered legally competent to advocate for myself. I’m usually verbal except in times of extreme distress, and I’m able to self-transfer from my chair or take a few steps if I need to. Most of my tics are small enough that they’re not immediately noticeable even if they cause bigger problems for me with mobility and coordination. All of these are passing privileges that make it easier for me to navigate the world of non-disabled people with less judgment and discrimination.
However, since my level of support needs has risen in recent years from what it once was, I’ve become hyper-aware of inaccessibility when I encounter it; often I find a situation that is an inconvenience or struggle for me to manage and find myself thinking that a person with just slightly higher support needs than myself may not be able to work past it at all. I try to advocate for consideration of all disabled people and not just those at my level of support, but like with all privileges, there are messages that can slip into our brains without us noticing, causing us to unintentionally contribute to the marginalization of others unless we actively seek them out and unpack them.
For instance, for “independent” disabled people, we often come to tire of people assuming that we can’t or shouldn’t travel alone; that our partners or friends are our caregivers; that we don’t work, drive, or live independently. Some physically disabled people resent the assumption that they are also intellectually disabled or Deaf, when people talk to those accompanying them rather than to the disabled person themself. I understood and even experienced these frustrations myself, until I listened to a person with a high level of support needs express their own frustration with the fact that they do need a caregiver, do need help with tasks of daily living like eating and dressing, and aren’t able to just wheel themself around freely as long as the venues are accessible, and people loudly proclaiming how we didn’t experience these things was silencing them.
I began to reassess my relationship with these assumptions and realize that my defensiveness around them was fueled by internalized ableism, which only further marginalizes other disabled people. By being offended that people think we have support needs that we don’t, we are conveying the message to our own community that people who do have those support needs aren’t people we want to be associated with. By not processing our internalized ableism, we are doing harm within our own communities.
Another way that we can fail to be inclusive is when people who became disabled later in life (or at any point after early childhood) or have a disability that was at one point milder but has progressed, center narratives of loss and mourning around ability. I have also been guilty of this. Having disabilities that were present since childhood but slow progressing until my thirties, when suddenly they rapidly progressed and forced me to adapt to a completely different set of abilities and support needs in a short period of time, I have fallen into the trap of missing the things I could do before and thinking that the central narrative of disability is loss of ability to do things we loved.
The problem is, while these are valid feelings, framing them as universal to the disabled experience erases all of the disabled people who never had the ability to do those things to begin with. We may think we’re helping abled people understand us by relating to how they would feel if they had to adapt to a life with less independence and more need for support, but what we’re really doing is facilitating the othering of disabled people who have never made that transition because they have been adapting to their disabilities all their lives.
If I say, “Don’t assume I’m not autistic just because I’m verbal” or “Don’t assume I can’t walk because I use a wheelchair,” I need to consider whether I am asking people to broaden their perspective on what people with my disabilities look like to include me – or asking them to replace their existing ideas with only people who look like me.
I am aware of the irony of me even being the one to write this. If the point of this article was to educate the greater world on how to be inclusive of disabled people all across the spectrum, the best person to write that would be someone who has experienced firsthand what it’s like to be dismissed and stigmatized even within the disability community by people hiding behind the I’m-not-one-of-those-disabled-people mentality. So I’m not addressing the world right now – I’ll leave that to someone more qualified. Instead, I’m addressing my fellow disabled folks with lower-level support needs. I’m calling all of us to start working on our internalized ableism.
Passing on the discrimination we experience from abled people by distancing ourselves from other disabled people and centering our own stories even when they are not the ones that most need to be heard isn’t helping the cause of disabled people. Being accepted by abled society because they see us as more palatable, less challenging to relate to, isn’t progress for our community as a whole. We need to listen to the ways that our ignorance of other struggles does harm and educate ourselves to be inclusive in our activism, or we’re not really fighting for an end to ableism; we’re only fighting to place ourselves on the other side of it. That’s not a fight I want a part of anymore.
[Featured Image: A photo of a person with very short hair. They are wearing a white shirt. Source: pexels.com]
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