2006 - Vol. 3, Issue 5

I recently attended a conference where I listened to David Eisner, the Chief Executive Officer of the Corporation for National and Community Service (a federal agency that supports volunteerism in America), discuss people who inspire. My immediate reaction when I began to hear this discussion of inspiration was to disparage Eisner's comments.

Activists with disabilities frequently view the word "inspiration" as a negatively charged one. We are often called inspirations, even when we don't feel like we've done much inspiring. We just live our lives as best we can. For instance, have you ever been grocery shopping when someone you've never met before stops you and tells you how inspirational you are? I think something like this has happened to every single person with a visible disability whom I know. It has become legendary; we share stories like this when sitting around with one another. We are all puzzled by how such a routine activity like shopping can serve as an inspiration for someone. We generally feel we're being informed that the other person cannot imagine how we can accomplish living our lives while we use a wheelchair, or when we are not able to see or hear or process, like those who are labeled not-disabled. We are "inspiring" not because of anything we've done but because we are all bombarded with images of people like us not being able to do much of anything at all.

At the CNCS conference, I realized that the stories I was hearing truly were inspiring to me. As I sat and listened, I wondered why we are so hard on people who tell us we inspire them. I recognized at least one reason for our (or at least my) reaction: Eisner discussed people who inspired others in some way and also declared that as a result of this inspiration some kind of connection was made. That's when it hit me. This was exactly the problem: Those of us with disabilities are frequently deemed inspiring without feeling like we've made any actual connection to the person who finds us inspirational. Can there truly be inspiration without connection?

I thought about this question as I learned about a young man in an Eastern state with a lifelong disability. As a boy, he began volunteering with a local organization. He had such an impact teaching computer skills that the organization hired him to work there. Someone who walked into that organization might see a young man sitting in a wheelchair in front of a computer and feel inspired that the young man got out of his home, period — and not take their thoughts any further. People within the organization found this young man inspiring — as demonstrated by his attendance at this conference to receive an award — but they also had connected with him as a coworker and a friend.

I've had many opportunities to be inspired by people with disabilities since the days I first got involved in the disability rights movement in the early 1980s. I often refer to people in this movement as heroes.

One story I repeat I heard from Helen Kutz, my mentor in this movement. Helen had scheduled her early 1970s classes at the University of Oklahoma at least one hour apart so she, as a quadriplegic wheelchair user, would have time to go home and use the bathroom if she needed to because there were no accessible bathrooms on campus. By the time I got to the University in 1976, this was not an issue; thanks to the work of Helen and other advocates the University has accessible restrooms. I never forgot this story, and a few years ago when I did a series of video interviews with disability rights activists, I called the program An Hour Apart, partly to remember Helen's experience, partly to commemorate a mentor, and partly because those separations that inaccessible bathrooms herald still exist.

When I first met Helen, I saw someone who used a wheelchair, drove, and ran an organization. But as we became colleagues and friends I also saw someone who, when she rolled down the street, was frequently stopped by complete strangers who told her how wonderful she was. How did they know? They didn't. They saw a wheelchair user out and about in the community and they assumed she was great because she had made her way outside in an unfriendly environment. This is an example of inspiration without connection.

But inspiration can also include connection. When I moved to the San Francisco Bay Area in the early 1990s, I was given a ticket to see a play by a man named Neil Marcus. The play was called Storm Reading and it was inspirational. Neil, who has a disability called dystonia, medically defined as a neurological movement disorder, appears at first glance to be much like a person with cerebral palsy. Neil had taken diary entries and turned them into a one–person play. The play required two performers in addition to Neil: a voice interpreter who interpreted Neil's speech, which is often difficult for audiences to understand, and an American Sign Language interpreter. What inspired me about this play more than anything was the humor Neil brought to advocacy. For example, Neil shares a number of letters he's written to various organizations or companies. One is to the Dystonia Foundation in which Neil requests funding to study his own life, that of a person with dystonia. Another letter is to a luggage company, seeking to act in one of their ads. Neil is shown pulling a suitcase off a tall structure with his wheelchair. The point is if the luggage can withstand the abuse Neil and his wheelchair give the suitcase, then it should also be able to survive the airlines. Storm Reading toured all over the world and the last performance was videotaped.

A few weeks or months later, I sat in a line waiting to purchase a ticket to see a concert. Close to me in line was this guy I thought I recognized. It was Neil.

I mentioned to him how much I enjoyed his play. We started talking and eventually we became friends. I learned that while his condition was called dystonia, his take on life was that he was a dancer.

Did I connect with Neil when I saw the play? Or when I met him in the concert line? If I had never seen Neil again after the play, he would have remained an inspiration. After all, one goal of art is to inspire, for the performer to connect with the audience. But the personal connection we later developed would not have occurred. While the inspiration of seeing the play was nice — it felt good — the connection Neil and I made turned into something much different and much better: a friendship.

People who tell us in the midst of a spontaneous encounter — such as shopping — how inspiring we are may indeed be trying to connect with us. Otherwise why risk interacting with us in this situation? But chances are good that neither they, nor we, know how to do this. Part of the reason for this is that it is difficult for many of us to connect with someone when we don't know each other. What motivation is there for either party to transform a chance encounter in a grocery store, or some similar place, into actually getting to know one another, to really connecting? It can happen, but most likely it will not. Neither of us is likely to take, or make, the time to let that happen.

But sometimes someone does take that extra step. For example, Ed Roberts, who is often called the "father of the independent living movement," was notorious for being late to scheduled events, from meetings to dinners to baseball games. One reason for this is that he went out of his way to talk to people. On the street, when he would see someone with a visible disability whom he didn't know he would go up to them and start a conversation. He believed this connection was more important than whatever event was scheduled. In fact, Ed would talk with anyone, whether they had a disability or not — if they sat next to him on a plane or were selling him a hot dog. Sitting in his large wheelchair, breathing through a ventilator, Ed often inspired people. But he also took the time and initiative to try and connect with those around him.

A goal I will now ask of myself is to remember, when comments of inspiration are sent in my direction, to try to turn the exchange into the context of making connections. How will I do that? I'm not sure. I'm not Ed, and I will never have the inclination to put as much time and effort into connections as he did. But I have been known to talk to pretty much anyone. So, if I can first remember that most comments of inspiration are meant as compliments, maybe I can look at them as gifts, rather than sneering at what I perceive as undeserved flattery.

One thing we, as people with disabilities, may be doing when we dismiss out–of–hand inspirational comments is closing a door that someone else is trying to open for us. The disability rights movement is all about getting and keeping those doors open. Perhaps we all need to remember that these experiences are another method of doing that.