David Shaw reflects on the impact of serving the disabled as an advisor before sustaining a disability himself.
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I was a temporarily able bodied, sound minded individual when I had the job of being an advisor to a self advocacy group. This was a group of individuals with physical and intellectual disabilities. As a professional social worker, I was comfortable advocating for people with disabilities. Individuals with intellectual disabilities were the easiest to advocate for. I was smarter than all of my clients. Fortunately, I knew better than they how to address problems in their life. I never looked down on my clients.
I was respectful. I was humble in my assessment of my ability to motivate my clients to act on my wisdom about them. I was humble about my ability to get families and other service providers to support my clients in acting on my assessments. I was mostly humble and mostly quite good at doing both, if I do say so myself.
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Self advocacy is a bit of an oxymoron. Advocacy is to speak on another’s behalf, self-advocacy is to speak for oneself. When I first started my role as an advisor to a self-advocacy group, I thought it would be my job to give members in the group something to do, by contributing some token suggestions on improving the services they were receiving.
In my first session I supported group members in brainstorming some ideas because they needed help coming up with them. The idea that got the most support sounded quite boring to me. The group consensus was that they wanted a path made between a residential apartment complex and the campus of a large building that provided services for individuals with disabilities. The path would need to be about twenty feet long and would involve removing a small tree from the large buildings landscaping.
I asked the group if they could come up with any better ideas. A less experienced social worker might have interjected a suggestion of their own, but I knew better. I knew that this was a self advocacy group. In response a group member got angry. I was asked if I had every walked along the route that needed to be taken by a person in a wheelchair to get from where they lived to the place they went to for therapy and education.
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I thought I should ask if the group thought they needed more help in the area of anger management. They could learn helpful life skills, like taking a walk to cool down when angry. I thought I would appease the group, by agreeing to take a walk myself instead. I told the group that I had never paid attention to the concern that was being raised, I would check it out and we would meet again in two weeks.
I was going to take a wheel chair, but decided to walk the route first. I didn’t need a wheelchair to see the problem. With the application of a little empathy, I could feel the problem. This short trip took the walker or wheeler onto the pavement of a road to avoid a four foot deep drainage ditch. I decided to cope in other ways with my boredom while I was paid to help some people with disabilities with their fear. I figured we could make short work of this path then get on to something more interesting.
The people who could make the path were busy people. The group’s request was met with the response that the problem didn’t effect enough people to warrant the expenditure of time and money it would take to make a path. Well, good, that was that, but it wasn’t. One intellectually impaired wise guy said he would take the time to count how many people made this trip in a week. He stood outside for hours day after day with paper and pen in hand making tally marks. He didn’t have anything better to do. Sometime he didn’t know enough to come in out of the rain, but he knew enough to keep his paper dry. I was surprised at his numbers.
The project went from “not worth it,” to “when we get around to it status.” Good enough for me, not good enough for the group. Without my permission one rogue member contacted the Town that maintained the road. They were told that the road was rescheduled for repaving and the Town could widen the road at the dangerous spot, make a wheelchair lane and put up a caution sign for motorists. When this was done, I had to admit to some embarrassment. I had to admit that this group was teaching me something.
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The path didn’t quite work out the way it was intended, because people who worked in the big building kept parking on the lane blocking access. The group was successful in having a memo go out to all that worked in that building to not park on the lane. Problem was they kept parking there. A group member suggested that group members who lived in the nearby residence could make up some notices and start ticketing cars. I almost shouted out my advice that the group did not have any authority to do any such thing. I didn’t know what to say, so I kept my mouth shut.
The ticketing worked. The parking on the lane stopped. The Town responded by deciding to enforce the existing ordinance about no parking being allowed anywhere on that road. Apparently as a group there was not damage in the collective brain that controlled good citizenship. As a group they were gifted.
They taught me how to let the poor ides just go and trust that the group would generate more good ones. For example a couple of group members started complaining that on cold mornings sometimes the van that took them to work wouldn’t start. They were upset about missing work. I thought a little lecture on frustration tolerance might be just what the group needed, until a group member reported that just that morning a staff member had saved the day by getting jumper cables out of his car to start the van. Somebody in the group thought it might be a good idea if all of the vans had their own jumper cables.
I remember learning at a lecture about the strength focused therapy trick of responding to a client who has a complaint, to think of a rare time when the situation that usually triggered their complaint, for some reason, didn’t. The idea is that the client may have already experienced the solution to their problem, they just hadn’t stopped to think about it. I forget how much that lecture cost me and how much I paid for the associated book. I don’t remember how much I was paid per hour for the group to remind me of this skill in the roll of their advisor.
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One of the more poignant group problem solving efforts arose out of a situation with a new group member. This member only wanted to sit next to me in the group and every time she did she sobbed. She was not a client of mine, but I knew what was going on. I had by chance sat by her at a memorial service for a friend of hers that died suddenly. For her, the group was an opportunity to receive my and the group’s attention to help her feel better about her grief. “Good grief. How long will this go on before I need to speak with her counselor as to the best way to let her know that she is in the wrong group,” I thought. Out of the group process, came the idea that perhaps she needed a different place to shed her tears. When the group advocated for her to have access to a tree planted in the memory of her friend, her crying in the advocacy group stopped.
I could go on and on, but for sake of brevity just one more. A chairperson for a committee that advised a county on policies for individuals with disabilities heard about the group. He told me that his committee had an opening for a consumer of services. He said the person who had left the position was very nice, but didn’t offer any real input into committee discussions. The chairperson told me that he wanted more than a “token” service consumer on his committee. I made a recommendation and agreed to volunteer to come to committee meetings to help coach her in this role. Things went pretty well at first, until a time when none of my whispered translations of committee discourse made sense to my advisee.
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I had to reluctantly admit to the group that they had a committee member that was becoming agitated due to my failure to adequately explain to her what was going on with the committee. The chairperson responded that her agitation was drawing his attention to the fact that the committee had “lost its way” and needed to step back and clarify its objective.
This incident only emboldened her. I felt like crawling under the table at the next committee meeting. A representative for a program that provided work for individuals with disabilities was the committee’s honored guest. He gave an overview of his agency’s services. After the applause my advisee lost her cool. She said she worked at the agency and wanted to know why there was a lack of work to do. Before I had a chance to try and cool her down, the speaker did so, by telling her she had asked a good question. The speaker talked about the growing economy of China’s impact on work at his agency. He shared information I never knew. I later thanked my advisee for providing me with this information.
I stopped working with this group over 15 years ago. Last year I stopped working altogether due to complications of Parkinson’s disease. Parkinson’s disease is complex and still poorly understood. When first diagnosed I was tempted to throw myself passively into the arms of the experts. The cognitive, mood, motor disabling pieces of this progressive neurological disorder was clearly rendering me less and less able to participate in decisions about my care. Would the self advocacy group I once advised agree with me. Hell no. So I went against my instincts.
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I did travel to New York City to a center of excellence for the treatment of Parkinson’s disease. My neurologist is world class. After telling me that she agreed with my diagnosis, she asked me what medication she thought we should try first to address my motor symptoms. I smiled. She did not begin by explaining the options and giving me her professional opinion. How odd. I knew that it wasn’t odd because I had done some research.
I gave her my recommendation and she said she agreed with it. I am typing this article today with two hands. Later I might go for a jog, or a bike ride, or a hike or I may go to the gym, I may mow the lawn. My medication is working well. It most likely won’t keep working, but for now I am very grateful for this medication, for having a good neurologist and for a group of people with intellectual impairments who taught me a thing or two.
As a man, I have much training in respected hierarchies of power. Human beings have evolved to follow the lead of alpha males and to honor rank. Good men are talking more about how this way of thinking holds on and how it no longer doesn’t. Sometimes the smartest person sits in the biggest office and sometimes the smart one is the one closest to the problem at hand. I ended up in a profession that is dominated by women. I have learned a thing or two from watching women do social work as well. As newly empowered women come to dominate more professions, there will be less domineering in professions. My neurologist, she asked for my opinion first. It feels good to have a first rate self-advocacy advisor.
Photo Credit: eltpics/Flickr