‘The Lived Experience of Disability’

Last time, I wrote about my gradual evolution toward a clearer understanding of disability issues. That blog focused on abelist language, just scratching the surface of what I’ve been thinking about lately in this general domain. It also mentioned a conference that offered me an opportunity to learn—and to reflect—more about this topic. The organization that sponsored this conference, the Association for Women in Psychology, has worked hard over many years to address issues of diversity. But this was the first time the conference has focused on a particular dimension of diversity, in this case, ‘The Lived Experience of Disability.’

This conference was in Columbus, Ohio. Not an ideal setting for a mid-winter conference, it seemed to me. I'd never thought much about Columbus, Ohio (except gathering from the song, "Hello Life, Goodbye Columbus" that it might be a place better left behind), and I didn't expect an exciting locale. But I did manage to learn some interesting facts about the area. For instance, Ohio played a very large role in the Civil War (Gens. Grant and Sherman were both Ohioans, as were other major generals and several members of Lincoln's cabinet), and as early as 1828, Columbus was a very early stop in the Underground Railroad. I also spotted some interesting architectural contrasts, public art, and community culture. I'll share a few photos from my pedestrian journeys while I tell you about my attitudinal journey. 

For starters, here's the street sign outside our hotel. Not a bad beginning ...

I knew almost immediately that this would be a good experience for me when I looked around the conference hotel and saw that I would be spending a few days in the company of many people who did not share my ability status. I wondered how this felt to them—to be in this company, perhaps for a change, not alone. I was also immediately aware of my own lack of facility in this situation. I wasn’t sure how to be, how to act, how to interact with these women. Some of my awkwardness stemmed from my sheer lack of experience. Some came from wanting so badly to do it ‘right’ and realizing how little I knew about what that would mean. And some was the awkwardness that comes from being confronted so directly with my privilege—with a piece of my privilege that I rarely have to look at.

This was a multi-day conference, and I went to a lot of sessions, most of them about disabilities. I won’t even try to summarize them all (You’re welcome). Instead, let me share just a few things that had particularly strong impact for me.

First, I was struck by the many parallels between ableism and ageism. In each case, the member of the ‘target’ group—people with disabilities and old people—are infantilized by those who don’t belong to the group. They’re treated as incapable of managing their lives, as constantly in need of care, as dependent on others. I so empathized with the speakers who said, basically, ‘Don’t always assume I need help. I’ll ask if I need you to do something for me.’ How many times have I had people offer, insistently, to carry my stuff for me, to open a jar, to help me with a computer, to do a million things I’m perfectly capable of doing.

Still, on reflection, I realize there are also huge differences: we are old only during one, relatively short part of our lives, whereas many people live with disabilities for much or all of their lives. People with lifelong or long-standing disabilities live with the associated stigma and with the demands of an abelist world for many years—even a lifetime. That means more years of discrimination and dismissal by that world—and it also means more years of resilience and competence despite that world. How does all that translate into the lived experience of aging as a person with a disability? I don’t know, but I’m sure it adds complicated layers that my aging doesn’t include. Also, there’s the reality that my aging entails a huge loss of privilege. I’m used to a world that worked pretty well for me—sexism and homophobia aside—and now it doesn’t. My outrage at this shift tells me something about the level of my privilege before it. And I can only wonder how this same shift is experienced by people with disabilities, for whom the world never worked so well.

A second thing I learned at this conference—also about my own privilege—is how rarely I have encountered to any great extent the ‘lived experience of disability.’ How few people with disabilities I have known, especially well. How few workshops or even single presentations about disabilities I’ve attended. How few people with disabilities enter my life in any venue—social, political, educational, cultural. Thinking about this made me realize how easy it is for us to miss these experiences—either through active avoidance or simply because our world is arranged in such a way that we don’t invite or create these interactions. This, in turn, makes me aware of my own privilege … again. Privilege has been defined as the absence of a need to think about your identity because the world is set up to work for you. White people don’t have to think about race, men don’t worry about gender, and the able-bodied world doesn’t have to think about disabilities. To do it, we have to want to, we have to think it matters. Otherwise, life colludes to protect us from dealing with it.

My third ah ha moment came in a discussion of deafness following a panel on the topic. An audience member posed a question about a hypothetical woman, an ally to the deaf community, who knew American Sign Language. What should this woman do, the questioner asked, if her partner refused to socialize with this woman's deaf friends because the partner couldn’t join in their conversations. The panelist replied that the partner might consider that s/he doesn’t have to understand everything that happens in order to be present and social. The partner might consider that this is the experience of deaf people all the time—they may pick up snippets of conversations, missing most, often without others recognizing that fact at all. And then, my favorite part, the truly eye-opening, consciousness-raising part, was when the panelist suggested that if the partner really wants or needs to understand the conversation, then the partner might hire an interpreter for her/himself.

I loved this answer—it made my privilege (and my previous lack of awareness of it) so crystal clear. Why, I asked myself, should ‘they’ always make adjustments to make me comfortable?! Why aren’t I obligated, especially if I’m entering their social circle, to make accommodations instead of expecting them to? Without her answer, I would have been left thinking that some arrangement should be made for the partner—either the partner doesn’t come or the deaf people translate for him/her. A definite ah ha moment.

I also realized, by the way, that I have done a very similar thing with a bilingual friend and her family. I avoided spending social time with them because they spoke Spanish together. They would speak English on my behalf, but that didn’t feel fair. At least I knew enough to recognize that. But why, I now ask myself, didn’t I find some other way, uncomfortable for me or not? What sort of rich experience might I have missed?

And the final story: I saw a movie that featured people with a variety of different disabilities talking about their lives and their encounters with ableism. One woman, talking about how she would like able-bodied people to relate with her, said, ‘Don’t pity me. Don’t think of me as different.’ There was something in that moment that shifted my understanding. Of course, my first response to people with disabilities is likely to be exactly an awareness of their difference—that’s how we code people, by differences. The problem arises when that differences is seen as all-encompassing, and especially when ‘different’ equals ‘wrong.’ A lot shifts for me when I consider this proposal: Disabilities are no more salient than any other difference except when they are. Using a chair is no different from any other form of difference, say, being being tall or short, except when it is. It’s about context. Sometimes, using a chair matters, and an awareness of how it matters and what that asks of me is good. But when it doesn’t matter, that particular difference recedes, is not a difference that makes a difference.

I’m reminded of a famous poem that my partner often invokes. It’s by Pat Parker, a Black, lesbian, feminist poet. The poem, called For the white person who wants to know how to be my friend, starts like this:

the first thing you do is to forget that i'm Black.

Second, you must never forget that i'm Black.

In the same spirit, the point is not that disability doesn’t matter or that we mustn't recognize its impact. It's that it doesn’t matter except when it does. That distinction may not always be easy to discern. But it opens the way for those of us who are (at least temporarily) able-bodied to get past the privilege that lets us either avoid considering disabilities or insist on seeing them as all-encompassing. And that, in turn, lets us get busy with the work we need to do.

And that’s where I am today.