Picture of a hand showing the letters "A" "S" and "L"

A month of new Abelist Experiences

I’ve had many disabilities over the years since I first identified as disabled during graduate school due to the inaccessibilities I experienced as I was navigating a bad repetitive strain injury. But this last month is the first time I’ve acquired a new disability rapidly, without any significant illness impacting my energy or cognition, and with my eyes wide open regarding disability rights, activism, community and so on. I have had a very compressed, and diverse experience of ableist and discriminatory responses to my disability as a result, along with some very positive experiences.

What happened? I lost my voice. The details of why and how are besides the point, but I slowed speaking over about 10 days and then stopped entirely for the month of November, starting up again very slowly in December, though I can only tolerate a little speaking, and mostly use it at home. Luckily I and my youngest son both started learning ASL in September for fun. Given my RSI I decided it (combined with writing on a small portable whiteboard) was the best option and have rapidly increased my vocabulary. ASL is currently my primary mode of communication.

To reiterate: I’m not in pain, tired, unable to concentrate, unable to stay awake, and my ability to use a computer/do my job is not affected, unlike with other disabilities I have. I’m not worried about my future, I know my rights, and am generally in a position of power. UW gave me access to sign language interpretation within a less than a week after I stopped speaking, despite my rudimentary knowledge of ASL, and I’ve had some major and exciting breakthroughs in my communication ability thanks to that. I have multiple students and colleagues who have stepped up to help interpret, and even tutor me, in ASL. I have the financial means to pay for needs that are not being met, such as supplemental interpretation when no one is available through UW. As a result, overall, I’ve had a lot of success in managing this experience. Yet, here are some of the barriers I’ve encountered.

Assuming one disability implies another: When asking for ASL interpretation, I’ve been told I needed an audiology evaluation even after clearly stating I had merely lost my voice. This is also a form of unnecessary gatekeeping, if enforced (it wasn’t).

Assuming not being able to speak means not being able to work: I had multiple people (including at least one in a position of power over me) suggest I consider going on leave, despite my clearly stated plans to use ASL for communication. To me, this comes across as ableist in assuming that my loss of voice implies an inability to work.

Shaming and gatekeeping for not knowing ASL well enough As mentioned above, I started learning ASL in September. My grasp of it was rudimentary when this started (I’ve learned quickly since but am still a beginner!). When I tried to set up IP relay so that I could make phone calls, I had to verify my address over zoom. The person I met refused to slow their signing down and ended the call abruptly when I explained I was new to ASL.

Direct Discrimination: When I tried to make my first IP relay call, after finding another way to verify my address, the company I was calling hung up on me. I tried three times, asking the relay operator to explain the situation in different ways. They hung up every time (and lost my business in the process!).

Ableist Jokes: I’m basically good humored about the whole experience, but I find jokes about “turning me off” (by not knowing ASL/turning off IM) and preferring me “silent” to be offensive and ableist. And with precisely those same people it can be hard to communicate about why.

Expecting accommodation to come entirely from me: I’ve been frustrated by multiple one-way conversations in which someone tells me something but does not account for the fact that voice travels differently than written communication or communication through an interpreter.

Disbelieving doctor: Apparently someone who has lost their voice should look upset, sound like they’ve talked much more than their voice can handle, and definitely not use ASL or other means to communicate. Also if they cannot speak they are probably also having trouble understanding simple concepts. Or at least that’s the message I got from my voice therapist who thought they needed to speak to me sloowwlly and loouudly, called my portable whiteboard a “crutch” and did not take my expressed needs and goals seriously.

In essence, this is the first disability experience I’ve had that is defined entirely by the numerous barriers put up by others. I’m not particularly surprised by the individual things I’ve experienced — many I’ve experienced before, and all are in line with disability studies theory about interpersonal and structural bias and discrimination.

I will admit to being surprised by the sheer amount of discrimination I’ve encountered in a single month. I suspect this is mostly about being in a new situation. But I’d argue that is exactly when compassion and support are most needed!

There are many take aways here, but since I write for a mostly academic audience, I want to highlight three in particular: (1) If you experience disability discrimination, remember this should not become normalized and is not acceptable. Reach out if you need a hand, or an ear. I’m always available. (2) It is hard work to overcome these sorts of barriers. Remember all the extra work your peers, mentors, and mentees who experience disability have to do. (3) This is slow work. It takes time to document things, find doctors, learn to use new types of accommodation. Give folks grace, compassion, and understanding as needed.

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