Controlling the Conversation About (Your) Disability

I’ve been thinking about the ways we control women. How we dictate the terms by which their identity is defined, discussed, and policed. When it comes to my identity as a disabled woman, I want to write the script.

Still. I've been forced to talk about my disability when all I wanted to do was chat about the weather. I have so many conversations that detour from a random comment about the rain to an intrusive question about my joints.

Sometimes, I want to talk about my disability, but the person I’m talking to decides he or she does not, and I’m asked to keep quiet.

Too many times, I’ve been disappointed to learn that others have discussed my disability when I wasn’t around, making important decisions without access to key information only I had.

The first kind of conversation control—injecting disability into a conversation in which it isn’t relevant—is unsettling.

As a college junior, I arranged to speak to my beloved Spanish professor about a letter of recommendation that would accompany my law school applications. He told me he’d be delighted to write one.

“For law school, I think about the way a student writes and speaks. If someone wants a letter for medical school, I look at their hands,” he said.

I chuckled and assured him no hand examination was necessary.

“I know. You couldn’t go to medical school. You’re handicapped!”

I burst into tears. I was surprised and embarrassed. This was not how I wanted anyone to think of me. I thought I was in control of the way others saw me. If anyone was going to categorize me, I’d be the one to do it. And if I wanted to go to medical school, I’d do that too.

It took me a long time to own the conversation about my disability, and to know how to respond to some jerk's comment about nonexistent limitations on what I might accomplish.

For most of my life, I controlled perceptions about my identity by pretending I didn't have one. As a kid and well into my 20s, only a small circle of people were let in on the secret of how disabled I was, how sick I was. My closest friends knew. Boyfriends usually knew. Some of my family members knew. A few select teachers were told when my disability affected my attendance.  I never asked people to hide my secret, but they all did.

My shame followed me into my 30s, a time in which I finally conceded that I needed workplace accommodations; for example, ergonomic furniture and assistance with lifting heavy redwells. That I received accommodations was something I thought should remain a secret. I told only my supervisor and my closest work friend. Even then, I held back, speaking to them mostly about my frustrations with the administrative nightmare that my accommodation-triggered time entries imposed (hours of paperwork to justify working 50 hours a week over the course of 7 days as opposed to 35 hours over the course of 5 days). I didn’t talk to them about how hard it was to open the heavy glass door you had to pass through after exiting the elevators. How it was next to impossible to do so while using a cane.

Then, at age 33, I let go. I started talking and writing about my experience with disability and illness. I testified at legislative hearings and appeared on television to discuss disability issues from a disabled person's perspective. Last month, I gave an interview about the ADA--on camera, in a wheelchair.

Deciding to speak about my disability, on my own terms, was an empowering change. It made me more honest. People who know me now know the real me, and they know how difficult certain aspects of my life have become. They also know my perseverance.

The strangest attempts to control the conversation about my disability are those that try to erase it. In the middle of generic conversations about my health issues I've been stopped mid-sentence. 

“NO NO NO I DON’T WANT TO HEAR ABOUT THIS" is often accompanied by a hand placed in front of my face, a human stop sign.  

Of course, I don’t have to deny my reality. I don’t have to hide who I am at work, at home, or when I'm out in public. Anymore, at least. 

I promise that I don’t talk about the size of the needle my eye doctor used to perform my latest round of eye surgery in the faculty lounge at lunchtime. I understand what is and isn't appropriate.

But the only way I’ve made peace with the limitations brought about by disability is to talk about them. When I talk about my disability and my health, I own who I am and I control the way in which I am seen.

How should you talk about your disability? On your own terms.

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