Insanity

• July 21st, 2006

Correct me if I’m wrong, but hasn’t the fine line between sanity and madness gotten finer?

George Price said that line and boy does it seem relevant today. The newspapers and newscasts are full of the latest casualties and the doom and gloom of no end in sight as the Middle East explodes in to hatred.

I can hardly think about it. Families obliterated (sorry civilians will need to die too), romances destroyed (this is more important) and children left homeless and abandoned (so what, there kids). How can this world continue to operate in this manner without serious long term consequences, like changing the very heart and soul of all humanity?

I fear I have been affected by this turmoil to the point that I no longer care who is right about it, I just want it to stop.

I spoke with a neighbor of mine recently who told me they would need people like me to help set up systems for people with disabilities in Iraq. I admit I felt a bit astonished when I thought about it; what is going on for people in that part of the world who have disabilities? I suspect not much….but I suppose that’s not much different that the state I live in, we just don’t have the bombs and a military presence. I suppose that is worse than disregard and large instiutuions.

Who Benefits?

• July 17th, 2006

After the longest ever legislative session in history, Virginia citizens finally have an approved budget. Seems the hang up was around transportation. A problem left unresolved despite the time investment from our elected officials.

For me the most disturbing aspects of the budget approval process were the decisions made that affected people with disabilities. An increase in Medicaid Waiver funding was granted to benefit people with disabilities living in the community as opposed to the state institutions, however if you look just below the surface of that seemingly good news you will find another truth. Virginia promotes and believes in congregate care, in other words people with disabilities living together whether they want to or not. Two increases were given, one for people who live in their own homes, which was 5% and one for people with disabilities who live with others who have the same label, mostly in group homes, which was 10%. What do those numbers really say? I think it is loud and clear. The more valuable approach here in the Commonwealth is congregate care. This is wrong for several reasons. The first being that it’s just one more example of not listening to people with disabilities and their families who are clearly saying they want something different than congregate or group care. Living in your own home or apartment is a fundamental principal to directing your own life. Secondly it provides for the largest increase to those keeping the status quo going thereby reinforcing the mantra of no change is good change. Coupled with the lack of affordable housing in the state is it any wonder that there is no other organization that exclusively supports adults with disabilities in their own homes with the exception of Hope House Foundation?

The other piece of good news touted in the budget is that we will be the first state in the nation, in the past 25 years, to rebuild our state institutions. In other words, money sunk in to buildings for large groups of people, are you seeing the pattern here? Why did this happen? Who or what is advising our representatives that this is good policy? Part of me thinks old habits die hard but another part thinks that the provider industry itself is promoting this kind of thinking. A good friend of mine who is a strong and fearless advocate for people with disabilities once advised me as to how to look at decisions like these. It’s something Karl Marx said and it’s only two short words that wipe away all confusion and speculation, “Who benefits”?

Goodbye to a gentleman

• July 10th, 2006

Ophir arrived on the door of Hope House some 20 odd years ago as a gentleman, the same way he left us. He was a man who understood much about the way people with disabilities were treated in our country. He was in foster care until he was 37 then institutionalized for over 10 years. He understood that others labeled him but he labeled himself as a man of value.

Ophir was practicing the art of self determination long before the field of disabilities coined the phrase. He wanted a life lived on his own terms from the moment he had a chance and he had a chance with Hope House Foundation.

Ophir had a great sense of humor, he liked a good joke and he had an easy laugh that he was willing to share with friend or stranger. Ophir lived in many circles; he loved his church and believed in participating in all functions, on his own. He had many friends within and outside of Hope House. He spent most of his years in the Ghent area and enjoyed a stroll thorough the tree lined streets while greeting his neighbors and taking the time to say hello to the passing dog. Ophir was just plain nice. But he could be stubborn too. Not about big things but little ones, how his clothing was arranged, what he wanted to wear and when he wanted to leave his house. Push him too hard in these situations and Ophir would hold his ground, and not budge an inch. During those times we learned a lot about the art of follow-ship.

Ophir loved a good time, enjoyed parties and could dance a night away. He was interested in other people and was consistent about inquiring as to your health, your family and your work. He complained about very little even though he had a history that would have warranted complaints. He was soulful and a forgiving man.

One of my favorite memories of Ophir was not monumental, no big celebration or event; it was what you might call a quiet memory. Ophir had his own apartment not far from where I live. I remember well this day. It was springtime and the trees were in bloom, the weather near perfect. I was coming home from some errand and I ran in to Ophir on one of his strolls, something I had done many time before. This time instead of just saying hello and exchanging pleasantries as neighbors do we sat down on the front stoop of my building. I don’t recall a great deal of conversation though I remember we did remark on all the birds on the middle medium. We just sat together, two folks who lived near one another and who had know each other for a long time…enjoying a bit of time on a beautiful spring day. A simple pleasure and the way I will always remember this very dear and gentle man. So go safe Mr. Ophir McAdoo and take your keys…

This I Believe

• July 10th, 2006

In junior high school I met Barbara Sperber, who had been labeled as mentally retarded. Barbara was the perfect target for adolescent immaturity and ridicule and she lived in my neighborhood. During school I hung out with my crowd and Barbara hung out with no one. It was only after school, that I would sometimes see her and make myself “available” to talk. One day on the bus ride home Barbara was being teased relentlessly and though I did not join in I also did nothing to intervene. When she stepped off the bus and the jeers continued I looked out my window and I saw her, I mean really saw her. She was looking up at the row of windows on the big yellow bus and she was crying. I will never forget that day, that image or the fundamental change that took place within me that very moment. I saw Barbara for the first time as a person. It was with this glance I gained the understanding of what is required to abuse someone, you must not think of them as a person, because if you did it becomes so difficult to participate in or even allow.

So 30 years ago I began my career as a support worker, living in group home with 8 folks with developmental disabilities. I believed at that time that I kinda just fell in to the job, but as the time passed I realized that the teaching was not from me, far from it. And maybe this was not an accident. I witnessed incredible tolerance and patience from the people I lived with; mostly towards me. I learned about perseverance and determination in order to claim a right to live in your own community. And I learned about how little I had developed those qualities though most of my friends and family attributed them to me because of where I worked and most importantly with whom.

That day so long ago has shaped and changed me in countless ways. Every time I look away from the famine in Africa, or the poverty in India. Anytime I brush off the comments of an elderly person in a nursing home or walk past a homeless person without a glance, I am reminded of that lesson so long ago, you must first believe the object of your abuse or neglect is somehow less than you….less of a person.

I believe in equality, not the kind the US Constitution speaks about, but rather what comes forth from my heart, my attitudes and my actions. The kind that supports every person’s right to be treated as if they belong here and to be treated equally when it comes to my own actions. The belief that everyone first and foremost is a person of worth and when that yellow bus of a world chucks them out with jeers and name calling, there is someone looking up and crying….just like Barbara Sperber. This is what I believe and I strive to live it everyday.

Spontaneity

• July 3rd, 2006

This week I had the pleasure of acting on a natural impulse without constraint. It was wonderful; in fact I’m still smiling about the experience. A friend and I were hanging out on my front porch. I had just started a new book and I was sharing certain passages I really liked by reading them out loud. I could tell she liked being read to so I moved from passages to the entire chapter. We then started taking turns reading to each other and before you know it we had covered five chapters. The book was The Last American Man, by Elizabeth Gilbert and we were totally immersed in the story of Mr. Eustace Conway. As we watched the sun set we starting talking about how cool it would be if we could meet him or better yet if we could expose him to all the staff at the organization that we both are employed within. And then it happened, total unadulterated spontaneity, I picked up the phone and I called him and asked if he would come to our next agency wide retreat in September. Just like that, impulsive, natural and without constraint. We were both thrilled when he said yes!

I’ve been thinking about this small act of spontaneous behavior and wondering about how available similar experiences are to people with disabilities who receive support from systems such as the one I work in. I suspect there is not a great deal of opportunity in a culture of support that by definition thrives on constraint and punishes natural impulses. Everything planned in advance, approved in advance, assessed in advance and if we could we would implement in advance, just to save time. I remember visiting the country of Denmark many years ago and visiting some of the organizations that offered support to people with disabilities. I was amazed they provided cleaning services free of charge to folks because “picking strawberries in the springtime was more important” or having time to “just gaze at a fire on a winter night” was paramount to having a good life. But what I remember most was a staff member telling me that you must always create time for spontaneity or why have a life? Indeed, why have a life if you can not direct it at a moments notice, with wild abandonment, and no constraints… maybe that is what the mission should be at my agency, not something neat and practical, but unrestrained spontenaity. Now that’s a freedom worth celebrating!