Disability advocacy is one of the places where I often feel real torn. The place where I see this most is in the push for organizations that represent disabled people to employ disabled people. “Nothing about us without us,” is the battle cry. I would like to yell along. I would like to make that push along with people.
But as I’m realizing from my personal experience, it’s far more complicated than just hiring more disabled people. It’s about marketing and it’s about disclosure. Here’s a question for you: do you know how many people with disabilities work at your place of employment? Are those numbers available to anyone? The answer is most likely no, because of the nature of disability. It’s often invisible, it’s often stigmatized, and it’s often personal. So many if not most people do not disclose, especially if they have an invisible illness. Sure, there are some disabilities that are pretty obvious, like if someone is visually impaired or mobility impaired, but even then, they are under no obligation to disclose exactly what their disability is.
Let’s use my life as an example. I work at an autism organization. I have not disclosed my autism diagnosis to my coworkers, because there’s really no particular reason for me to do so. I don’t need accommodations at this job that I can’t create for myself with relative ease. I know of at least one other person in our organization who is on the spectrum but does not discuss their diagnosis or personal life publicly. We do not highlight either of us in our marketing because it would be wholly inappropriate for us to blast the personal lives of our employees. Neither of us is comfortable being out and talking about our experiences with our coworkers. For reference, we are an organization of less than 20 individuals.
My workplace has been criticized for not hiring autistic people. An organization that is over 10% autistics is criticized for not having enough autistic voices. Don’t give me BS about only autistics working at autistic organizations, that isn’t feasible or practical, and 10% is much higher than the proportion of autistics in the general population.
This means that those of us who are on the spectrum have a choice: disclose or have our voices and contributions erased.
Suddenly we are required to disclose our disability or be criticized for speaking over the voices of other disabled people. That’s a really shitty position to put someone in. Now look, I understand. If people aren’t open about their identities it’s really hard to advocate for their rights. Coming out is incredibly important for many movements for lots of reasons. But we can’t punish the people who are afraid to come out. This is why I have an issue with saying that only disabled people can speak about disability: you don’t know who is or isn’t disabled and no one is under any obligation to disclose to you. You cannot be the police of who gets to speak about disability because then you are the police of who has disabilities. That is not something that I am willing to accept.
With all of that said, it is important to continue to push for organizations that focus on disabilities to include people with those disabilities, and most especially to hire people with disabilities. Yes, this does put us in a bit of a bind: how can we hold people accountable if we have no way to get accurate numbers? How can you make improvements if you can’t really accurately identify who has a problem?
Ha, you thought I had good answers. I don’t. Unfortunately one of the most integral parts of improving life for people with disabilities is decreasing stigma, so that coming out isn’t as fraught or scary of a process. And part of that process is having visible, out members of society doing the things we consider normal. Welcome to the Catch 22 of activism.
So I suppose if there’s one thing I want from this post it’s for people to be aware that criticizing organizations for not including individuals with disabilities is not always as perfect of a solution as it might seem. You might be telling someone with a disability that they don’t count or that they have to prove their disability in some fashion. You may still choose to make the criticism, but please do not erase those who aren’t out. Note that there may be people with undisclosed disabilities, and be open to hearing that there is someone on the spectrum or with a disability that you didn’t know about.
The hardest thing to recognize is that there are virtually no actions that don’t harm anyone. So when we are engaging in activism, we need to be aware and self critical.
Featured image by Caitlin Tobias.
Some of it is temperamental. We, collectively as a human race, tend to speak out and act at our worst. The cholerics will step on everyone with little regard for others if it means achieving their goals. The melancholics will criticize everything without action. The sanguines will exhaust themselves trying to please everyone. The phlegmatics will just give up. Everyone should take their temperaments into account as activists.
-Choleric-Sanguine 8w7 ESTP ILE
This is so freakin true. I don’t disclose my invisible illnesses at my workplace, or particularly publicly, but I do disability advocacy. It’s a highly problematic space to work in for the reasons you described above, and I’ve thought about this issue myself. While I wholeheartedly agree with “nothing about us without us,” I also acknowledge and embrace that we don’t, and really can’t, know who “us” is.
[…] Disability catch-22. And forced disclosure. […]