Lindsay has lived with chronic pain since she was twelve years old. She organizes a local chronic pain peer support group in Washington, DC and she works as the policy analyst at the National Council on Independent Living, a grassroots, cross-disability advocacy organization (www.ncil.org).
I often forget that the world doesn’t see me as disabled. I’m in pain all of the time, and pain doesn’t allow itself to go unnoticed. Pain is distracting, demanding, and exhausting; it’s easy to forget that people have no visible indication of the pain that affects me so deeply. People can’t see the muscles in spasm so severely that I can barely breathe. They can’t even see the surgical scars that line my spine and belly. So while I am living my pain every moment, it’s hard for me to remember that the rest of the world can be completely oblivious to it.
Having a non-apparent disability like chronic pain comes with unique challenges that are not often addressed. For me, having a non-apparent disability has meant being questioned, doubted, and accused. It has meant facing demands to prove myself when asking for accommodations that only “real” disabled people should get. It has meant having people feel entitled to ask intrusive questions about my medical history, my personal habits, and my body.
Having a non-apparent disability has also meant that I’ve foregone important accommodations to avoid uncomfortable confrontations. It’s meant my need for self-care has been seen as flaky or selfish. And it’s meant I’ve repeatedly been stung by the ignorance and insensitivity of people’s words.
Unfortunately, these situations occur frequently. Even more unfortunately, some have occurred within the disability community. As a person with a disability who works at a disability rights organization, those instances are especially hard for me. Having a non-apparent disability has meant that I’ve not infrequently felt out of place in a community with which I strongly identify. It has meant that something so central to my identity has gone unrecognized – even questioned and dismissed – by people in that very community. These experiences are not only hurtful and invalidating, but they’re also counterproductive. Cross-disability efforts significantly strengthen the disability rights movement, and people with non-apparent disabilities are an integral part of that.
My experience is not unique, so there needs to be a shift in the way people understand what it means to be disabled. This may be a lofty goal, but I think part of it can start with us: the people with non-apparent disabilities who live this every day. We need to remember that regardless of these challenges, we are the best experts on our own bodies and experiences. By sharing our stories, we not only empower ourselves, but we also use our experiences to educate others. We have the power to start controlling the way our stories are told. Perhaps our combined voices can help us move past the ‘seeing is believing’ mentality that’s so pervasive in our society.
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