See Invisible Disability

By: Loolwa Khazzoom, Founder, Dancing with Pain

November 20th, 2010 • Living with Chronic PainPrint Print

I read something really interesting the other day, on a disability advocacy website. It said something to the effect of how when the Americans with Disabilities Act was put into effect, it was only addressing a certain kind of disability, namely, the kind affecting people in wheelchairs and the like — visible disability.

Then there’s invisible disability, which is only now starting to get recognized, thanks to the hard work of a whole bunch of uppity people who, despite chronic pain and fatigue and a host of other ailments still, somehow, manage to raise their voices articulately and demand accommodation.

I’ve been going through my own little protest movement out here in California, following the hearing disability that was offered to me as a parting gift from my apartment in Los Angeles. As those of you who have been following my blog know, I’m now extremely sensitive to noise, meaning that being around other people translates to a constant assault on my nerves.

The problem is that not only can’t people see my disability, but they also, for the most part, have not received awareness and sensitivity training in how invisible disability works – what it’s like to be in the mind, body, and spirit of the person who is disabled. So when I request disability accommodation, in the most polite, gentle, reasonable way possible, mind you, I still can be perceived as a pain in the ass, a control freak, a bitch, a “who does she think she is” type.

“The groundskeeper of my apartment complex hates me for being disabled,” I confided in someone I met at conference last month. “No, he hates you for having a voice about being disabled,” she replied. Good distinction.

The backlash wears me down, to the point that I am afraid to ask for accommodation. Because I don’t want to be perceived in the ways people end up perceiving me. So often in this world, rather than critique a system that is causing suffering, people condemn the person who is suffering and is strong enough to call attention to that system.

I really, REALLY want to hide out. The problem is, where? I have nowhere to hide. My own home is unsafe, despite the fact that I did everything in my power to find a safe and quiet place. From the drawers, doors, and cabinets banging in my neighbors’ unit downstairs to the tree cutters sawing my hearing off (more about that in my next post), to the door repairmen banging away across the landing, it’s damn near impossible to escape the incessant assault.



Comments

Aliza Hausman November 20th, 2010

Every time I read one of your posts, I think “Amen, amen.” I have to often explain to people that because a lot of disability programs out there are for people with VISIBLE disabilities, I am considered “not disabled” enough. Forget trying to explain that doing things like grocery shopping, walking to the library or countless things they don’t think about cause me a great deal of pain, especially if wherever I am is noisy to boot!

Anne November 21st, 2010

I empathize. I have complex migraine and not a lot of headaches, but CONSTANT DAILY sensitivity to light and sound with some tinnitus thrown in for good measure,  trouble with balance. No one gets it. I need white noise constantly bc of the tinnitus. To cycle, paddle my kayak,  walk in the sun – these  become very hard for me. Concerts are impossible most of the time and I used to run a music venue- so I love music. I am determined to keep working, as I need it to survive; but also, know I would be quite depressed if I did not have that (3 half days a week). Regardless of the weather, I try to walk in woods at least several times a week- it’s lovely  – I tend towards shaded, heavily wooded areas b/c the light is too painful. But I admit, being an outdoors person, I really miss the  sunshine. I am very very grateful for what functioning I have. I was going to end with, ‘but, often times I do wish other people got it’, more honestly, I think I have given up on that one. People are kind, but clueless for the most part. And then, some are not so kind. I don’t explain much anymore. “I have a Neurologic condition.”  How can they possibly understand something so NOT VISIBLE?

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