Saturday, September 29, 2012

A response to the National Forum on Disability and the absence of some invitees

“Not everything that counts can be counted, and not everything that can be counted counts.” (William Bruce Cameron). Our numbers do not tell us what is most important but each of us counts. 

The national Forum on Disability happened on September 28th in Columbus Ohio. This was an important forum and most likely the only one held on disability issues prior to the presidential election. There are many things at stake for people with disability. Those who spoke were passionate, sincere and respectful of those for whom they must serve. Others sent representatives in their place to speak for them. 

People with disabilities may not make up the largest voting block. Some people may not vote due to accessibility or never being supported in learning how. Many voting facilities are not particularly accessible as we have discussed several times. The problem is, our leaders must take the time to listen to all of the voices. Some voices are not heard through traditional spoken language. They may use sign, pictures, symbols, Braille, eye-gaze etc. It can take a lot longer to ask a question and have a conversation.  You cannot tell by looking at someone who they are, what they need or how to serve them well. This requires a direct interaction. 

We have come far in how access is provided to people. Gunnar Dybwad & Hank Bersani talked about the new voices we must hear, cultivate and support. Seeing the value in another human being cannot be directly taught. It has to be experienced and lived. It does not seem that long ago when I was working at a state school for people with developmental disabilities. I had the privilege of working with those who were challenge on multiple levels. Only a few spoke or walked. Many had been there since they are infants or young children. Some of the staff raised them and cared for them as their own. It took a great deal of time to get to know each person. As I did friendships formed, unconventional communication occurred, learning activities were better designed and there was much enjoyment in light of incredible hardship at times. These individuals were born too late to benefit from most of the laws although their living conditions had improved immensely. They taught me so much without saying a word. Their voices were present for those who would listen. They did not vote but they counted in ways which could not be measured. I remember assisting in planning their funerals, providing the music and watching the responses of their lifelong friends and residents at the services. I remember standing in the basement of one of the buildings where the morgue was, looking in silence as the person I had known lay on a metal table, covered and awaiting to move to their final resting place. It is a feeling I will never forget. Someone should watch over as they lay resting. They shouldn’t be alone. No matter what, the life they lived counted and needed to be respected. 

As one of many who assisted in establishing a now infamous research library which was originally located at a state school for people with disabilities, I had the humbling experience of going through the slides of tissue which had been saved many years ago for research. Their voices could still be heard in a different way. Their legacy and sacrifice counted. They most likely never voted yet they were citizens who were silenced by those who society choose to count. I looked at the graves at a State Hospital for people with mental illness which only had numbers on them. No names were present yet these voices need to be heard even now. They count and we need to listen. There are many who have gone before us and many yet to come. We have to slow down and take the time to listen. It does not matter if you are making a donation to a candidate, part of a large voting group or just one individual, the people running for office need to take the time to stop, listen to your voice and think about how their actions impact people in ways they had never realized. There are always unintended consequences to our actions, some being good and some causing duress to others. The only way to know the impact of your actions is to look, listen and respond to those who are on the receiving end.  

We the people are the United States. You do not know who we are by looking at us, assigning us a number or grouping us. Leaders stand beside and as one of the people. Leadership is shared and it is we the people, all the people who have the power to make change. Leaders must listen to the most soft barely heard voices. For in these voices they will find lessons learned that most of us can only stand in complete awe, humbled by the strength, sacrifice and commitment each has demonstrated without recognition, without yelling from the highest mountain. They live their life each day, setting an example we all should pay much more attention to. Please listen to the old, present and new voices. Who knows what wonderful things could come from this!

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