A Hard Look at Invisible Disability
I am invisibly disabled -- or so I'm told. The problem is that I don't believe a distinction between visible and invisible disability is useful, or even meaningful.
It takes practice, I guess, for other people to understand the ways disability affects my life. Some experience with me, or at least with people who are like me in some way, will give you a much better handle on what I'm going to have trouble with, and why.
In other words, as you come to know me, you'll get better at spotting the barriers I face when I want to participate in the life of my community, my society, my world. You'll learn to spot the strobing fluorescents, to catch the verbal constructions that trip me up, to notice when I cannot recognise the people and objects in front of me and the speech and other sounds around me.
Spend enough time with me and you'll understand not only that I need to have expectations and anticipated events laid out for me, but why. You may be surprised at first that I can manage in one situation and not another, but eventually you'll probably learn to tell the difference.
As I watch wheelchair users' different problems with the same curb cut, I am reminded that it takes practice to really understand how disability affects any individual's life. Every so often I am surprised when someone is stopped short by a curb cut I thought she could navigate. But my failure to see the barrier doesn't make it invisible.
In the disability community, we speak as if some kinds of disability were visible, and others weren't. Let me suggest a different approach: think about the ways different kinds of disability have become more familiar, and more visible, to you as you've gotten to know more disabled people.
When nondisabled people look at "the disabled," they see wheelchairs and picture-boards. They see helmets and hearing aids and white canes. With a few exceptions, they don't pick up on how individuals differ from one another; they notice the tools we use. And these tools, to the general public, equal "disability." Venture out without a well-known tool, and your disability is "invisible" or "hidden."
But the tools are only the first step to visibility. The second step is the behavior that is expected, given a particular set of tools. The person who uses a white cane when getting on the bus, but then pulls out a book to read while riding; the person who uses a wheelchair to get into the library stacks but then stands up to reach a book on a high shelf; the person who uses a picture-board to discuss philosophy; the person who challenges the particular expectations of disability that other people have is suspect. "I can't see what's wrong with him," people say, meaning, "He's not acting the way I think he should." "She's invisibly disabled," they say, meaning, "I can't see what barriers she faces."
Why, you might ask, do I even bring this up within the disability community? Although we may understand disability differently than others do, we have not, as a group, abandoned the suspicion of people who may not be "really" disabled, who may be "slacking" or "faking" or encroaching on "our" movement and "our" successes. And we respond to people who challenge our ideas of what disabled people are "really like" just as nondisabled people do: with suspicion.
We also have developed a fixed idea of what "accessible" means, and when "invisibly disabled" people complain of barriers we can't pick out, it's too easy to dismiss them as unimportant distractions from the "real" issues -- the issues that "visibly disabled" people are concerned with. After all, the "visible" barriers cannot be ignored.
But a meeting in a room with a ramped entrance isn't accessible to everyone if the meeting is held in a language not everyone understands. It isn't accessible to everyone if the rules are complicated enough that not everyone who wants to participate can figure out how to do so. It isn't accessible to everyone if the information that will be discussed wasn't available in forms that everyone could understand.
Because "the invisibly disabled," like all who defy expectation, are suspect, people ask us why we need accommodation rather than what accommodation we need. "What seems to be the problem?" they ask, when we point out barriers. "Everyone else can do it," they assure us. "It's already accessible." And while, for example, wheelchair users no longer accept being carried up a flight of stairs "as a favor," we are too often expected to smile gratefully and accept favors instead of rights.
It goes beyond that, though. Even other disabled people who rankle at the question, "What's wrong with you?" will turn and ask me the same question -- and expect a detailed and deferential answer. Even other disabled people, when faced with an accommodation request they regard as strange (for a disability they regard as invisible), defend barriers. "You have to understand," they say as we struggle for access. "You have to be patient."
And to that I respond, "Why should some disabled people get to demand justice now, while others are expected to be patient and understanding in the face of injustice?" Why should some people's reasonable accommodation requests be treated as assertions about disabling barriers and others' merely as statements of personal preference?
Every person is unique -- though the defenders of the nondisabled status quo would like to believe we are all the same. Even within the disability community, we vary: we have different things we cannot do, or do as long as or as well as or in the same way as non-disabled people. And this means our experience of disability varies: different aspects of the way society has arranged things are barriers to different people.
We will always need to learn from one another about the barriers each of us faces, and barrier removal will need to be an ongoing process, not an accomplishment we can safely put behind us. Dismissing that which is unfamiliar to us as "invisible" (and suggesting that it cannot be discerned rather than that we have not learned to discern it) is another way of throwing the responsibility for social justice back on the individual who carries the burden of injustice.
I am invisibly disabled -- or so I'm told. That means my access is my problem. I disagree.
The disability rights movement is based on the conviction that varying from one another doesn't mean we have to face ableism, to deal with environments and interactions that are designed for some -- and not all -- of humanity, to experience the injustice of being left out because there is something we cannot do.
So let me challenge all of us: among ourselves, let's give up belief in "invisible disability." Let's work as a cross-disability community in a way that acknowledges all disabled people -- all people -- as individuals. Let's agree that no-one should face ableism either inside or outside the disability community, and let's act on that agreement.
Cal Montgomery lives in Chicago. An earlier version of this article appeared in the newsletter of Progress Center for Independent Living in suburban Cook County, Illinois.