And All That Jazz

• August 31st, 2006

At a very young age I was exposed to jazz. Old school jazz, Chet Baker, Paul Desmond, Jaco Pastorias, Stanley Clarke and Wes Montgomery. I adored it, but not at first. It was hard for me to appreciate this art form, difficult to follow and understand. I recall thinking this is just a bunch of noise that is not connected, sounds without rhythm. During this early period of learning I lived with a jazz musician and it was he who taught me how to not only hear the music but to really listen to it as well. What a wonderful gift, the jazz and the listening part.

I’ve been thinking lately that this is the most important skill we must teach people who support folks with disabilities, how to listen, I mean really listen. When we get this right appreciation and understanding are the results and if you really think about that… well what more is there?

Finding A Place to Belong

• August 7th, 2006

I speak about people with disabilities having a sense of belonging, a view that can encompass the community or their own living room. More often than not I am usually referring to a physical space, a home, the workplace, the neighborhood, but there are other ways of belonging that are much less tangible.

The examples that come to mind are belonging in your own skin, within your gender, nationality, culture and religious beliefs; this type of belonging is more difficult to understand because not only does it change over time or by event but aspects of self in this regard are rarely discussed with people with disabilities and never show up on a “social history”.

How does one belong and connect to personal grief, shortcomings, and regrets? How do we belong to the notion that learning, no matter how painful, that we can still apply the lessons and at times even embrace them? I find this to be a very personal process overlooked in our quest to support individuals. It’s left to chance, the luck of the draw, or whatever. Maybe that’s how it is for all of us, that age old quest, the struggle for significance.

A Surgeon’s Journey

• August 7th, 2006

My Mom was operated on this past November. Her surgeon is known as the very best in our area for the type of surgery she needed. Like many in the medical profession he was self assured and quite factual in his diagnosis and explanation of the treatment my Mother would require. But, there was something else about him, something different. I could not put my finger on it exactly but I had this feeling that he had traveled a journey that was somehow connected to me. Later I would learn why, he has a son with a disability.

I have had a number of conversations with this man of medicine over the past 10 months or so, and all are linked by his love for his son and my work in this field. He told me his relationship with his son has taken him places that he would never have gone to without this experience. He is genuine when he speaks about how much he has learned and the process of discovery both factually and figuratively in his efforts as a parent. At times he appears to have a continuous thought process concerning what is best for his son and what his future may hold, speaking realistically and attempting to understand the various options and systems one must face for someone to “have a life of their own”. His mind is quick and he has an uncanny ability to process information in a manner that creates understanding, not only for him but me as well.

I like talking to him because he wants to explore possibilities versus limitations, because he has joy and not anger but most of all because he not only loves his son, he likes him. This system is so good at setting parents up to focus on the disability instead of the person, to talk about the problems instead of the accomplishments, and individualized plans as opposed to a life. No wonder so many families become disconnected to this system of discouragement and pessimism.

I remember as a child my Mom would be called in by one of my teachers to discuss once again my excessive energy and talking while in school, one teacher even recommended that she put me on medicine. My Mom’s response, she liked me fine, just the way I was.

Smoke and Mirrors

• August 1st, 2006

My laptop was stolen last week. The entire act took about 10 minutes and left me with hours of hassle, which I suspect will continue for some time. I have very little experience with crime on a personal level so it’s been interesting and at times amusing to observe my reactions to this event. I guess you could say I needed my “self advocate” skills to deal with all those involved. I really don’t like that word, self advocate, it seems to be exclusively associated with the disability industry. Have you noticed in all civil rights movements of the past no one was called a “self advocate”. People involved in securing their rights were often referred to as “oppressed”, “devalued”” or just plain “forgotten”, but never an advocate? More positve terms were “civil rights worker” or “protester”. Funny how we have to make the same thing that has been going on for centuries somehow different when it involves people with disabilities, all just smoke and mirrors, fooling no one.