‘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.

Foremothers and nowmothers

I’m just back from the annual conference of the Association for Women in Psychology, a perfectly fitting place to have spent International Women’s Day, March 8. The conference was a lesson for me, a lesson in movements and their shifts, a lesson in patience and persistence. A lesson I can always use, since I’m prone to impatience and its attendant crankiness.

AWP conference logo
Reminiscent of Sojourner Truth and Helen Reddy

The Association for Women in Psychology, AWP, was created in the early 1970s as a response to mainstream psychology’s persistent disregard for women—as subjects in their research, as clients in psychotherapy, and as professional members of the discipline. This sort of feminist rebellion was happening all over the place in those days—in medicine and law, history and business, union halls and grass roots organizations, art museums and gyms. Everyplace you looked, women were protesting their exclusion from mainstream society and all its tributaries. AWP was psychology’s most radical version of the rebellion.

Over the years, as psychology has become more responsive to women’s voices and women’s issues—arguably precisely because of AWP—the organization has sometimes languished. In fact, it has sometimes looked like it might die of neglect, as foremothers moved on and younger women went elsewhere. But even in those periods, AWP remained a bulwark, a safe harbor where you could go to present your latest sort of edgy work, hang out with friends and colleagues, and always be safe in the assumption that you were among feminists (including a lot of lesbian feminists). Occasionally that assumption gets tweaked by an odd comment—which can be a bit jolting—but usually, progressive positions (feminist and otherwise) are taken as given. Besides, the atmosphere is wonderfully open and supportive, and the conference is small, which together make it a perfect place for students to enter the professional fray.

These days, AWP seems to be enjoying a resurgence. The offspring of those early foremothers are now themselves mentors, “nowmothers,” of a new generation of feminist psychologists. And recently, those younger folks—graduate students and early career psychologists—have been showing up in droves with exciting new work. So, a weekend at AWP is almost always a treat, and it was this time.

Thinking about AWP’s ups and downs provided the first part of my “lesson” for the weekend. One of the women I virtually always see at this conference is a founding “foremother” who has done consistently amazing work in the field. I’ve never worked directly with her (the closest I’ve come is being on panels with her), but I consider her an intellectual mentor nonetheless. I’ve sometimes wondered why she bothered to stay so involved with AWP during its less stellar years. I have to admit that there were periods when I didn’t go to the conference because the offerings seemed so feeble. Yet, now I'm enjoying this newly enlivened AWP as it thrives on, despite my skepticism. I actually know this about movements—they move in fits and starts, and sustaining them requires not giving into the fits, as impatient folks like me can easily do. Seeing this woman yet again, I realized that I owe the life of this organization to the patient persistence of people like her who didn’t bail, who had faith.

Another version of the same message was delivered by the conference theme and the program supporting it. This organization has tried long and hard to become truly inclusive, and the program this year was a striking example of that effort. The theme was “Voices of Indigenous, Immigrant, and International Women,” and the two keynote speakers were a Thai feminist, Buddhist activist, founder of the International Women’s Partnership for Peace and Justice, and a Navajo historian from the University of New Mexico, whose work is on indigenous feminisms and colonization. The alternative perspectives these women brought—“alternative,” that is, for many of us, but completely central for them—were a reminder of why this sort of inclusiveness is so important. Both of them challenged ideas I usually take for granted—ideas I only realize are culture bound when I hear someone speak from a totally different vantage point. Otherwise, I’m the fish who doesn’t know she’s wet.

Here’s that lesson in persistence again: It has taken years, decades even, for AWP to make this crucial shift. They started from a very privileged position that passively welcomed non-mainstream people and their work to the conference. This despite the fact that the conference was totally shaped by (and for) a white, middle-class, educated, U.S. perspective. Over the years, they have aimed for—and increasingly achieved—a position that actively seeks out different experiences, other perspectives. One that insists on “cleaning house” in all the ways required to make those additional perspectives integral to (instead of attached around the edges of) the conference. The two keynote talks were lessons in this sort of expansiveness. And these women’s presence with us was testimony to the dogged persistence of the organization in trying to walk its talk.

But I don't want my focus on my “lesson” to misrepresent my time at the conference. It was also rich with really interesting small sessions, like a discussion of the evolving meanings of sex, gender, and desire—complicated notions if ever there were any. (If you’re looking for a hit of confusion, ask me for some readings on this topic.) Then there was a movie about Daisy Bates, the largely unheralded African American woman who was the force behind the “Little Rock 9”—the students who integrated Central High School in Little Rock, Arkansas, during the mid-1950s, the most heated part of the Civil Rights movement. Another session amounted to a guided tour of issues related to race, sexual orientation, and religion. And then there was a video and discussion about micro-aggressions (a concept I mentioned in an earlier post), whose title wins my award for the best concise summary of a topic: “Did you just say what I think you said?”

Besides all that, I got to hang out with some friends whom I don’t often see. One of these women is doing amazing international research, studying LGBTQ activists in other countries. Soon, she’s off to Kyrghyzstan, where she has an ongoing program of work. She speaks Russian, which is helpful to her, humbling to the rest of us. Another was a Salt Lake City social worker whom we got to know during some long-ago research about LGBTQ youth in Salt Lake. Through her, we caught up a bit on the high school “kids” we studied … who are now in their 30s. (How did that happen?).

Finally, to top off the weekend … AWP takes the legacy of its elders/foremothers and its mentor/nowmothers seriously. The annual program always includes a celebration of “crones” (wise old women), and the organization gives an annual award for mentoring. This year, my partner received the mentoring award for her wildly diverse mentoring activities. Over the years, she has served as a mentor (sometimes officially, but more often not) to pre-college students, first-generation (and other) undergraduate students, graduate students, doctoral candidates, post-doctoral students, early-career professionals, and well-established colleagues. She always says she “didn’t do anything,” but plenty of folks thought otherwise and submitted a very impressive group nomination. To celebrate, I bought her a gorgeous purple hoodie with the conference logo. Call me a big spender.

So what, I ask myself, did I bring away from this weekend? (She got a sweatshirt and all I got was a lesson?) I brought these things: A reminder that movements move, but slowly and not always steadily. A reminder that it takes individuals who are willing to stay the course when the going gets tough—or worse, boring. The inspiration of women doing remarkable work around the world, women who share important values with American feminists and who also have a lot to teach us. A mix of regret that my particular life course was ahead of (rather than in the midst of) all the things that are happening these days and satisfaction that those things build on older stuff, some of which I did. Gratitude for the foremothers and nowmothers who created and create the space for all this to happen.

Especially, a deep sense of the continuity of it all. The conveyor belt of people moving the movement.

Palm Springs ... and the real desert nearby

As a long-time desert rat, I’m always excited to travel to hot, dry places (although the dry part is getting less appealing as my skin drifts toward the texture of parchment). So a trip to Palm Springs for one of my favorite annual conferences sounded doubly appealing.

bell hooks

The truth is that I usually spend conferences inside the hotel, except for an occasional dinner foray. So it generally doesn’t matter if it’s in Michigan or California in the winter, Florida or Aspen in the summer. But this time, for a change, I actually spent some time enjoying the locale.

First, the indoor part. This was a conference of the Association for Women in Psychology, a 1970s-born organization of feminist psychologists. The conversations tend to be rich, the conference sessions stimulating, and the humor a relief from the usual conference fare. It’s so satisfying to hang out with like-minded folks, to start from shared assumptions about women’s place in the world and then move forward from there. This beats all to heck the requirement that you first fight for that ground before you can talk about anything else. And with bell hooks as the keynote speaker, how can you go wrong?

After the conference, we stayed an extra day to spend time with friends whom we rarely see. The four of us decided to rent a car and drive from Palm  Springs (which held no particular appeal for this group) to Joshua Tree National Park. This was a great trip! What looked like maybe a 2-hour drive turned into 4 or 5 hours, as we stopped to take pictures and explore sights along the road. We also had some puzzles to figure out. The first was the rock formations. As a (very) amateur geology buff, I found these really intriguing. We speculated and guessed and watched for signs that would explain these odd rock piles—and then located a very clear description in the park brochure we were carrying with us (but apparently not reading too closely).

The next puzzle was the Joshua trees that give this place its name. These are a form of yucca, with the leaves/blades growing in clumps at the end of branches instead of growing individually on the ground. Some were huge, maybe 25–30 feet high, with many branches, sometimes at odd, twisted angles.

But others were (relatively) tiny, maybe a foot or two tall. These had a single central stalk with a bunch of leaves/blades on the end (instead of the many arms of the larger trees). We decided they were babies, but then speculated for a while about how fast they grow—a foot a year, 10 feet a year? Are these this year’s crop or are they from several years ago? Again, we found the answer when we thought to read the brochure. Joshua trees grow at the rate of one inch a year. One inch a year! So even these little ones are a decade or two old, and the big ones must be hundreds of years old. Think of what this means on a human scale—the big trees we were looking at were already around when the Declaration of Independence was signed. A reminder of the eye blink I mentioned the other day.

And then there was the desert itself. The Mojave: vast, dun-colored, with a wide, high sky, hot in summer (but just in the 80s the day we were there), seemingly barren—but, like most deserts, actually full of life. I love deserts. I have spent countless days in the red-rock country of southeastern Utah, exploring the canyons there. I’ve hiked, backpacked, road biked, mountain biked, canoed, rafted, and even 4-wheeled in that remarkable corner of the world. No place has the same hold on my soul as that area. Still, when we climbed out of the car to take a walk, I had this lovely feeling of being home in the dry, warm air, with the clean breeze, the clear sun, the sand and rocks and cacti. We saw a few creatures—a kit fox, some scrub jays, a lizard, and a bald eagle. And lots of people.

Despite the presumed collective wisdom of our group, we somehow forgot to take along sunscreen, hats, or enough food (“provisions,” we called it) to keep us fueled for the day. So, tallying our “compendium stupidium” (we created a substantial idiosyncratic vocabulary along the way), we decided it was best to cut our walk short and find a meal somewhere. In the tiny burg where we emerged from the park, the best option was Denny’s … not our best food of the trip, but it served our purpose just fine. We returned to Palm Springs and the hotel way too tired, but in a good way. It was a very different—and very welcome—way to finish off a conference.

Despite the deadly drudgery of getting through security at the Palm Springs airport, it was one of my favorite conference trips ever. Not because the conference was so stupendous, although it was good. But because of the really satisfying combination of the conference, good time with good friends, and a chance to spend some time in the open air of the desert. Any desert.