LIBERATION
THE PRIVILEGE OF KNOWING DISABLED PEOPLE
I have many, many friends who have disabilities. Working for eighteen years in the disability rights community, I have gotten to know people with a wide range of diseases and conditions, people who use wheelchairs, blind people, deaf people. My husband and two of his sisters have muscular dystrophy. About half of my closest friends have disabilities. Disability doesn't seem like such a big deal to me.
People in the mainstream culture say they are “moved and touched” by disabled people. People who have survived catastrophic illness often say it changed their lives for the better; they were forced to re-evaluate their priorities. The Hollywood movies with the big-name actors that portray characters with disabilities always get an academy award. People are struggling to understand something there, to push past the stereotypes of suffering, burden, and tragedy and find the fresh perspectives that disabled people can offer all of us.
My own disability, spina bifida, which affects my leg strength and bladder function, was mild enough that I could pass as a non-disabled person. But my early experiences with surgery and hospitalization made me seek out other disabled people when I became an adult. I made this choice to support my own liberation. But I also believe that choosing this identity and the association with disabled people has given me a unique view of the world.
The lives of people with disabilities seem ordinary to me. Even the oppression of people with disabilities, the confusion and awkwardness that non-disabled people exhibit, and the discriminatory policies of our society seem ordinary and sometimes even comical to me, since I deal with them everyday in my work and personal life.
Every once in a while I have an experience that reminds me that my knowledge and familiarity with disability are unusual. What I usually take for granted gets illuminated as unique, and I glimpse that my relative comfort with disability and disabled people has given me an appreciation of all human beings and some special slack. It struck me recently to ask myself, “What does knowing disabled people do for a person? What have I gotten from these relationships?”
I decided to try to articulate this, but I also asked several friends -- disabled and non-disabled, who know many disabled people--as well. The question I asked was, “What important and unique appreciation of being human have we gotten from knowing many disabled people?"
The first thing I thought of and many of my friends said was, “Because of closely knowing many disabled people, I'm much less afraid of becoming disabled myself” This huge fear for most people in the world, of “What if that happened to me?”, figures into their everyday fears and self-imposed limits. The dread of becoming quadriplegic from an accident keeps people scared of interacting with disabled people, but it also keeps people from really living in and appreciating their bodies. I personally know closely about twenty people who are "high quads” from spinal cord injuries or polio, who use powered wheelchairs and are bathed, dressed, and fed by helpers. All of these quads (as they sometimes refer to themselves) have good lives. Most are active in social change, all have close, wonderful friendships; several have spouses and children.
Many of these severely disabled people had to face near death and a long rehabilitation period. This put them to the test of their endurance. Disabled people who “make it,” meaning those who go ahead and choose life and connection, have had to exercise their courage, but additionally, their creativity. I think some of this "decision to survive" rubs off on their friends.
Here are some other points people made in response to my question:
One friend, a non-disabled woman, took a job in a disability services organization staffed mostly by disabled people. She told me, "The first day on the job I met a blind woman who was pregnant and a quadriplegic man who was engaged to be married. That blew my stereotypes. Meeting many disabled people made me more aware and appreciative of individual differences. I'm just not able any more to see people as types."
A friend who works in advocacy told me, “What’s been useful is to truly understand and be able to spot disability oppression. In the health care reform debates, the media endlessly relayed soap-opera-like stories of individuals’ illnesses and how they couldn't cope with limited health care coverage.” This man saw that these "individual health stories” were about disability oppression. Knowing this makes the world make much more sense. It becomes clear that individual solutions to social problems are unworkable and that systemic change is essential.
Another friend, married to a disability activist, said, 'What I learned from meeting disabled people is never to assume that someone doesn't have something to offer you. In the mainstream culture, we learn to write people off based on superficial characteristics. I never do that anymore." Someone else put it this way: “I've learned from my disabled friends that everyone is important.” This is the central message of the Inclusivity Movement: All people have something to offer each other. We want to include everyone, not only to be kind to those otherwise left out, but because we really need the viewpoints and contributions of everyone on the planet.
Contrary to the stereotype of the "tragedy” of disability, a friend who works with disabled young people told me, "I'm much more aware of what people can do, rather than what limitations disability causes. People are wonderfully adaptive, creative, and endlessly inventive. Disability forces people to use this gift."
For myself, knowing disabled people has mainly given me the pleasure of knowing these people as people. Sometimes I get a sense of having a marvelous secret in being able to enjoy the rich diversity and creativity of some terrific people that the majority of the population is denied, simply because of their own fears. How sad for them.
I've also had some dramatic moments of appreciating the privilege of the real-life training that exposure to disability has given me.
Before he died last summer, my father, who had worn a hearing aid for years, had a stroke that profoundly affected his communication abilities. I've known lots of people who had hearing impairments and lots of people with strokes. When I went to see him in the hospital, I noticed that every-one else who came into the room barely touched him, except to gingerly hold his hand, and they kept forgetting that his hearing impairment, plus this stroke, were making communication remote. I talked to my family about this, but they needed modeling. I gently grasped my father's face in my hands and said calmly and loudly, not shouting, 'Hi Daddy, it's Marsha. We're here and we love you." My father, who had not spoken for many days, said, “Marsha, Marsha, Marsha.” I know that my ease, as well as my insistence that he could know me and hear me, enabled him to feel our presence and our love for him.
Regularly hanging out with people who don't see, can't walk, use devices to move or communicate, take medication for pain, and on and on makes me notice what I can do and how easily my own body moves. This is especially good for me since I have had physical struggles with my own disability that in the world of “normal people" define me as a hard luck case. I see everyday that everything is relative.
My husband uses a power wheelchair and requires help around the house. Just like any wife, sometimes I get resentful at having to pick up after my husband. But I can't yell at this husband for not hanging up his shirts. (I do anyway, and he yells back.) I help him get dressed, and I've come to appreciate the sweet intimacy of helping someone with their body. It's like an extra opportunity for a hug. I have had to periodically work on my own young-person memories of “being helped" by adult caregivers in the usual not-quite-caring ways that our society perpetuates. This has given me a push to ask for more help in my own life.
A quote I like about helping: “Finally I accepted that although I may not like it, one of my chief responsibilities as a physically disabled person is to help able-bodied people. Help them feel comfortable; help them feel useful. I have long known that the only truly happy people are those who are lovingly doing for others. So I do all I can but try to accept help graciously for the things I can't."
Many non-disabled people can live their whole lives within the illusion that humans are separate and autonomous, that we can be 'independent,' which in our culture really translates to "isolated." Interdependence is essential and unavoidable for anyone who hopes to live a full life. Disabled people do not have the same access to the "American dream' of isolated lives.
Something I learned from taking leadership of people with disabilities is to be relaxed and completely flexible about large numbers of people hauing needs. Spending a lot of time around people with disabilities forces me to be relaxed and flexible! Getting uptight and impatient is laughable in the face of accommodating a whole workshop of people with the full range of disabilities.
At our recent East Coast Disability Liberation workshop with ninety-three people, we had twelve people in wheelchairs, seven more with significant mobility impairments, five blind people, eighteen people with chronic pain or fatigue, and six with significant communication disabilities, including two with hearing impairments. We also had seven adolescent young people in addition to all the other characteristics that a big group brings. I am proud that the main comments at the closing circle were not only how much people felt completely welcomed, at home, and cared about, but that this was the most relaxed workshop they had ever been to.
What's good for people with disabilities is always also good for people without disabilities. For example, ramps and curb cuts make it easier for parents with babies in strollers and people with any kind of walking limitations. We persistently reminded people at this workshop to say their names every time they spoke aloud to the whole group to enable the visually impaired people to know who was speaking. By the end of the workshop everyone knew everyone else's name.
Real inclusion of everyone is such a wonderful thing to behold. A number of Jews, disabled and non-disabled, commented at the workshop that the effort to bring to the center people who are so often left out on the margins was an enormous contradiction for them as Jews and that they felt like this was the safest workshop they had ever been to!
Of course this kind of event takes skilled planning, and I depended enormously upon the experience and competence of the workshop organizer, Janet Bemault, to put together an effective team of helpers who worked through the weekend to make things run smoothly. It helps to plan in advance, but we can't always anticipate people's needs beforehand and must also scramble on the spot to figure out what might work.
For example, a man arrived at the workshop from a long distance, and we discovered that he had a significant communication disability due to a mild stroke. In addition he had a hearing impairment. These disabilities left him confused and unable to follow the classes I was teaching. The background noise of the group, combined with the constant flow of information, was overwhelming. We tried offering makeshift accommodations to his disability, one being the use of a laptop computer onto which an ally could transcribe the proceedings of the classes so he could read as well as listen. This did not prove useful, but the next simple suggestion worked well. I invited him to sit right next to me or immediately in front of me, close enough to touch, for all the rest of the classes. After the workshop this man, a retired physician, called to appreciate that "my persistence in making things work for everyone was astonishing."
This is only astonishing for people who are used to being left out We can learn to stop leaving people out! Robin Smith, an RC disability leader in Syracuse, New York, has made it a point to learn to connect with people labeled autistic. She and others are learning a new system called “facilitated communication" that enables many nonverbal people to communicate. Next year we will invite her autistic friends to the Disability Liberation Workshop. Micheline Mason, the RC International Reference Person for Inclusion, is working to train us in the RC Communities to include a much broader group of people, eventually everyone!
Years ago I experienced an important turning point, an epiphany really, in my appreciation of disabled people. I was attending a disability conference in Germany. One afternoon my group gathered for an outing to a small village to sightseer shop and taste the local restaurant fare. Standing in a marketplace in a group of people with guide dogs or in wheelchairs or with canes and crutches, I was again struck by our differences. I noticed the startled glances of the local townspeople. I remembered as a child seeing groups of disabled people, and now here I was, one of such a group, and in Germany! I was overtaken by a pleased sense of belonging to the whole community of different-looking people, a sense of willingness to give up the quest for acceptance by the mainstream culture, and a release of my need to have my self-worth be tied to arbitrary bodily characteristics. We were such a rich collection of experiences, points of view, skills, and talents. No matter that the rest of the world couldn't appreciate our contributions; we were made all the more valuable by it.
I know I still have a ways to go in freeing myself of impatience or fear about disability. A few years ago I was invited to teach a peer counseling workshop to a group of deaf-blind people. I had met deaf/blind individuals before but went to this event having no idea how such people could function in a group. I arrived to find a dozen disabled people, each with their own personal sign language interpreter signing either right at their faces to their residual vision or else finger spelling into their hands, like Annie Sullivan and Helen Keller. I quickly figured out that l had ... to . . . speak... like... this, - .. very ... slowly... so ... everyone... could ... keep... up. I felt like I had traveled to Jupiter where gravity plowed every movement to a laborious pace. I felt frustrated that I could only get through about a quarter of what I had planned to say. But then it was so exciting to sense in my new friends the impact of their inclusion across the barriers that have so excluded them. Later I went to an international conference with interpreters for several languages. Same pace of communication, and again, so exciting!