Disability, Volleyball, and Attention

Debbie Newton's excellent article on disability in the July 1997 Present Time gives a clear picture of the details of a disabled person's life and the difficulties of living without accessibility. Too often we don't hear about these issues in RC because the people who could inform us aren't able to stay in RC.

Many points in her article-such as coming home from workshops in pain, allies forgetting to do what they said they'd do, being blamed for being disabled, wondering if it makes sense to continue to come to workshops, and having an enormous commitment to the Co-Counseling project-reverberate with my experience as a disabled person in RC, though the back disability that affects my being at workshops and out in the world is quite different from Debbie's disability. I'll be talking mainly about back disabilities here.

At one time there were half a dozen of us with back disabilities who attended local RC events. We had organized our home and work lives to take care of our backs. This meant, as with all disabled people, that there were some activities we could not or would not do because of lack of accessibility and others (for example, plane travel) that we had to do despite that lack. In RC, we could control the accessibility of our classes and sessions. But accessibility became an issue when we wanted to participate in the workshops of the larger RC Community. Though some of us stayed in RC and simply did not attend workshops, I have seen others, one by one, drop out of RC.

We did many things over the years to try to make workshops accessible for ourselves, starting with speaking or writing to organizers beforehand. Once at the workshop, we would explain our disabilities, ask not to be bumped, put "Don't jostle" signs on our chairs, pin our names on our pillows so people wouldn't "borrow" them, and remind people that we were lying on the floor because we were physically unable to sit in folding chairs. We drew disability posters to hang next to the workshop schedule and made announcements at every announcement time.

Some things worked to a certain extent (great thanks to all allies), but nothing seemed to work overall. Being assisted individually for specific needs or being treated well by some people was not enough. We were variously banged and jostled and left the workshops in pain. We scorn patterns in RC, but I think we also need to face up to their omnipresence and the real damage and pain they can cause.

It was puzzling and restimulating asking for what seemed like not much help and not receiving it. It was frustrating paying for workshops and not having a place to sit, counsel, or eat.

I always knew that accessibility was theoretically possible but I didn't (and still don't always) have the right combination of counseling and the environmental changes that my disability requires. A breakthrough came when someone had the brilliant idea of an anti-jostling "fence" made out of slim wooden poles and crepe paper, to surround my mat where I lay during the workshop. It felt completely ridiculous and scared people away (restimulated them), but that was the first time in a long time that I did not come home from a workshop in pain. It also helped me to realize how much of my workshop experiences (not to mention my disposition) has been ruined by worrying, and how much I'd been compromising, probably due to the internalized oppression of having a hidden disability, as well as other distress. The next version of the fence, balloons on the floor tied with crepe paper emblazoned with the slogan, "Send hugs, not bumps, over," was less restimulating to me and others and equally effective.

At another workshop, someone removed one side of a cafeteria table bench and replaced it with three chairs so I could have back support while I ate. This turned out to be useful to the whole workshop, since "Isabel's table" became a landmark for where groups would meet during lunch. It was infinitely better than avoiding the cafeteria and subsisting on snacks from the main room, or the ineffective practice of sitting on a chair at the end of the table where I felt conspicuous, actually was out of the way, and, worst of all, got bumped.

I saw another elegant accessibility solution for a woman who could be hugged only on one side because of recent surgery. We, the rest of the workshop, kept mixing up our left and right. We solved the problem with two badges. One had the word "Hug" in the middle of a circle, and she wore it on the huggable side. The other badge, for the sore side, had a circle with the word "Hug" in the middle and a slash through it, the international symbol for "no." Not only did this solve the hug problem, it also solved the "constantly worrying about being bumped (or whatever else is physically painful) so that you can't really be at the workshop" problem.

I don't know why wearing a badge worked and putting a sign on the back of a chair didn't. I don't know why people encroach on mats and mattresses, which are clearly there for a reason. I am completely puzzled as to why, when I used to tell people not to genially slap me on the shoulder because it caused me physical pain, the most common reaction was for them to do it again (and sometimes again), saying, "You mean this hurts? You mean this hurts?" (I have since learned to take a step backwards and put up my hands when I tell people to quit slapping me.)

I don't have answers to these questions though I think they have to do with a complex mix of disability oppression; distress around help, specialness, and boundaries; and plain old too much going on at one time. I had an insight from an RC volleyball game. I saw a woman stand still, watch the ball fall right next to her, and say, "I'm sorry. I wasn't paying attention." This woman had freely chosen volleyball over other break-time activities. She was standing on a volleyball court, in front of a volleyball net, and she wasn't paying attention to the volleyball game. It began to strike me how pervasive this not paying attention to present time is. The slogan in many games, "Keep your eye on the ball," could be seen as simply a reminder to pay attention. This, to me, explained why asking people not to jostle went in one ear and out the other. (People often apologize for jostling by touching the disabled person's arm or shoulder, thereby jostling them again. The disabled person wants to say, "Oh, it's okay," because the hurt is not intentional. But it's not okay.)

I have found it useful to compare playing volleyball and being an ally, to being a counselor: there are agreed-upon roles, and attention and decision are necessary. We have some solutions to the attention problem in sessions, including making and re-making the decision to put attention on the client. This could fruitfully be extended to volleyball and maintaining accessibility. Another part of the analogy between other activities and the counseling process is that unless each of us, in our turn, puts our attention away from our own distress, they won't work. The Co-Counseling session won't work, the volleyball game won't work, and accessibility won't be organized and maintained. It is possible to have enough attention for each other that we at least get most of our needs taken care of most of the time. (Sessions, games, and accessibility don't have to be perfect.)

We're all in this together. Accessibility benefits everyone. The buttons to open heavy doors, meant for wheelchair users, are great for people with balance or back disabilities or for those carrying a hot beverage or a package. There are many reasons not to bump, poke, slap, thump, or nudge people besides back disabilities. One big reason is that no one enjoys it. Other reasons could be recent surgery, injuries, poison ivy, or sunburn, not to mention restimulation from being sexually abused or physically attacked. We will all benefit from more aware touch, from counseling on our own disabilities and bodies, and from learning to be good allies to each and every one of us. To this end I would urge all of us to love our bodies, pay attention to where our bodies are in relationship to other bodies, keep working on paying attention to present time, and solve insolvable problems. (They're not that hard.)

Isabel Auerbach
San Francisco, California, USA

(Present Time No. 110, January 1998)

Last modified: 2016-08-22 02:11:22-07