Learning to listen

Many years ago, as the congregation was greeting me after a worship service, a woman who was active in our congregation asked me if I might be interested in serving on a committee at the place where she worked. She was a nurse for an agency that provided services to persons with disabilities. In those days it was common to call part of their work “sheltered workshop,” as one of the things they did was to provide work settings for the people they served. The workshop also provided residential services, lifeskill training, and a host of other services as well as training and support for vocational work. The agency needed independent members of the community to serve on a human rights committee to review the work of the agency and make sure that the actions of the agency did not violate the rights of persons served.

I agreed to serve on the committee, thinking that it might be a one or two year commitment. I ended up serving on the committee for decades and, in the process, learning a great deal about human rights. In the early years of my service, I thought that one of my jobs was to speak for those who could not speak for themselves. Among the persons served by the agency were people who had disabilities that prevented them from learning to speak. Most of those served, of course, could speak, but some could not. A few of the persons served needed help with virtually every task of living - getting dressed, eating, bathing, health care and medication, even moving about. Sometimes the agency had to serve as a financial agent for those served, managing their income from supplemental social security, paying for services received, budgeting for household and personal items as well as helping the person have some discretion in spending on a few things such as snacks, clothing and games.

In all of these things the community needed to have people who could keep an eye on the agency and make sure that it did not take advantage of those served. There never was an intention of violating someone’s rights. The agency was, after all, started by parents who were seeking services for their children. Love was at the core of its mission. But as it grew over the years there were institutional aspects to its work. At the time I started working with the agency, it was serving over 500 persons and it continued to grow to serving over 600 at the time I retired.

Early in my work with the agency, I learned that I did not need to speak for others. In fact I learned that I could not speak for others. I could try to imagine myself in the place of a person served. I could try to understand the frustration of encountering barrier after barrier in trying to live with disability. But I could not put myself fully in the place of another person. And I could only imagine what they needed to have said.

Part of my learning came from a man who had lived with cerebral palsy all of his life. He was in his forties when I met him and he served on the human rights committee alongside me. When I first met him, I could not understand anything that he said. Another person in the agency would translate his words for me and serve as a communications bridge. I learned, however, that he was speaking English. When I listened very carefully, I discovered that I could understand what he was saying. Little by little, over the course of months and months, I learned to understand him when he spoke. I also learned to ask him to repeat when I didn’t understand. Eventually I even learned to listen and speak with him on the telephone. It was a very important lesson for me. A human rights advocate does not need to speak for others, but a human rights advocate does need to learn to listen very carefully.

Over the years, the human rights committee heard several appeals from people who felt that their rights had been violated. An agency founded by parents to care for their children - sometimes to care for children become adults even after the death the parents - such an agency can be quite paternalistic. There is a tendency to try to prevent persons served from making mistakes such as unwise spending decisions or getting involved in relationships that cause pain. Being granted freedom, however, can mean being given the freedom to make, and hopefully learn from, mistakes.

Persons with disabilities make mistakes. People who have no visible disabilities also make mistakes.

Another lesson that I learned from serving as a human rights advocate is that we all have some disability and those of us who do not have physical disability will all become physically disabled as part of the aging process. I began to think of myself, in the words of a man who used a wheelchair for mobility, as “temporarily abled.” The real question for every person is, “Will you be defined by disability or by your ability.” Some who work and live with those with disabilities have begun to use the words “differently abled” instead of disabled. In the case of the man whose words I could not understand when I first met him, our communication failure was caused as much by my listening disability as by his speech disability. An accident or illness can render any of us in need of assistance or special devices to go about our lives. We all need help at some points in our lives.

Even though I have moved and no longer serve with that particular agency, I still think of myself as a human rights advocate. I still engage in educating others about members of our community who live with disability. I still work to remove barriers to participation by those who have been labeled “disabled.” I still am learning to listen.

I am so grateful to that nurse who asked me to serve on the committee. She opened a world of meaningful relationships for me.

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