Sunday, April 26, 2015

Life Work Passion

Experience “set me up” to have a stressful, complex, gratifying career.  Much of my life I was an outsider, compelled to joust with authority, and determined to have society accept those of us who are different-----all of us, and thus, me.

So many forces channeled me to my life. I was different from what was expected by my parents, my teachers, my friends, my doctors: everyone.  I was bright yet challenged to perform normally academically.  I saw no reason that I should not control my world and my life.  I had very controlling parents.  I was nonconformist.  My parents were  the consummate 1950’s, middle class, Bing Crosby family….conservative, religious, anti-intellectual, hard working, repressing emotion other than love of country and church.  Life was conflict.  It has been since.  It is life.

Leon was a man in his early 60’s. His mother gave birth to him in 1945.  In 1949 he went to live in Columbus State Institute.  He never left there until 2004. The most useless of all indications of human giftedness is the IQ, and Leon’s was exceptional.  It measured 8.  In 1949 that identified him as an imbecile,  a cretin, and incapable of existing outside the walls of a state institute. Leon lived his life on a ward with at best very limited interaction with others.  His care was somewhat less than would have been afforded a dog boarded at a kennel while his family was on vacation.  

His family was not on vacation.  His father was dying of colon cancer.  His mother was adjusting to being a single mom in the 1950’s with 2 sons, one institutionalized and the other identified as what was in those days termed “a slow learner.”  She met  with parents in her community with kids like hers. In turn they reached out to small clusters of parents in other communities around the country.  This network of coffee table, kitchen table gatherings, mostly of moms was the only chance most of these parents had ever had to know others whose children were the ultimate social outcasts of their day.  Leon’s mom placed ads in newspapers around the country.  They became the catalyst around which these gatherings of moms crystallized.  On vacation, no she was not on vacation.  Her network of parents writing letters to each other culminated in the formation of the first, and today the largest, advocacy organization in the US and worldwide, that promotes the well-being of people with developmental disabilities.  Today it is The Arc. They revolutionized the lives of their children, their families, their communities, our culture, and themselves.  Leon’s mom in Cincinnati, Ohio was not on vacation while her son was subjected to neglect in the state institute. All good people knew that the institutes were how those “like him” had to live out their useless existences.

In 1998 I became the Executive Director of The Arc in Cincinnati.  My 22 year career to that point had been carved by the  force and erosion of my life to the intersection of my consciousness and this organization.  I had a board member in his 50’s who had a developmental disability.  He was Leon’s brother.  He had some personal issues that led me engage with him as an advocacy case, and then as a friend.  Eventually he introduced me to his brother, to Leon.  Leon’s mother was long since dead.   Leon was now in his 60’s and, lived in a dismal nursing home in Springfield, having been “dumped out” of the State Institute when Arc Advocacy had forced its closure and demolition in 1979.  His life there was less one of neglect and malignant indifference.  No one ever knew him or touched him unless they received a paycheck to do so.  No one spoke to him.  You see he was profoundly retarded   That label was his complete identity.  There was nothing for him to say, nothing to say to him.  

I took his brother to visit him once every 3 months.  He’d made a deathbed promise to his mom to take care of his brother Leon, always.  He did all he could within the limits of his own gifts and his own impoverished lifestyle.  He had a dream that one day his brother would live with him in Cincinnati: that they could be together.  He did the ridiculous!  He asked Leon, “Would you like to come back to Cincinnati and live with me?”  Leon’s face lit up.  Very loudly he uttered a very clear “YESSSSSS”! We were in the forefront of an advocacy process that had come to be called self-determination.  Everything in the lives of people with developmental disabilities was determined by their funding, their Medicaid funding.  I had been one of many advocates who had been successful in creating a new mechanism for Medicaid resources to be used to permit people to live lives they chose for themselves rather than where “the system” placed them.  Sixty years after 4 year old Leon was taken from his mother’s arms and placed in the state institute, he was coming back to his community to be with his now late middle-aged younger brother.  

Leon relocated to a nursing home in Roselawn.  His brother visited him often as did an increasing cluster of friends who formed around him.  His caretakers treated him so differently than had ever been before.  You see now when those who cared for Leon had a quarterly meeting regarding his care, half or even a full, dozen friends would attend to join the conversation.  He made numerous outings into the community, a new enrichment of Leon’s life.

I was very involved in public policy advocacy.  A central aspect of that was a revolving political cycle called the Ohio Biennial Budget deliberation.  That season the dynamics of the budget were particularly difficult and we were fighting desperately to maintain vitally needed funds.  One of Leon’s new friends was a school teacher who was my closest friend.  She was teaching middle school social studies in a parochial school.  She had become involved through Leon and I in the broader advocacy process and was following the process of the state’s developmental disabilities budget through the legislature.  She supplanted the boring civics text relied on previously, with the observation of how a bill becomes a law….the Ohio Biennium budget bill.  I was planning testimony for advocates before the Senate Finance Committee.  Inspiration struck.
We introduced Leon to this class.  They heard his life story and responded to him as though he was the greatest rock star the fifth grade and sixth grade had ever seen.  They included him in class outings and invited him to their Valentine’s Day party.  That party featured a high point of my career.  I asked Leon as he basked in the attention of these children in a school reception for him, (Leon had never been to a school before),”Leon, look at all the friends you have.”  Leon responded as loudly as he had that day when asked if he wanted to move to Cincinnati with his brother.  He bellowed, “One, two, a whole bunch!”  I was floored...not bad for a “nonverbal” guy.  Leon had found his voice, and he even counted: literally, and figuratively.  He had been waiting for people to talk to him.

The class was as intrepid as it was precocious.  It went on to provide testimony the Ohio Senate has never heard the like of again.  Forty-five fifth and sixth grade students, their, teacher and an Arc Director, piled off school buses outside the state house along with their friend Leon and his brother.  They filed in and sat down.  I had been able to arranged for them to present to the committee.  While Leon and his brother sat before the Senate Finance Committee, four students came forth with some of the most compelling witness testimony presented the Senators that biennium.  They spoke of their relationship with their friend Leon, and what they needed the committee to do with that budget bill for Leon, his brother, and all Ohioans with developmental disabilities, their friends, and families.  That budget campaign was successful.  We had impact.

My career and my passion was the topic of this piece.  I had the privilege of meeting Leon, his brother, and working to help us all recognize we have gifts that enrich each life, no matter how uncharacteristic we may be from the way most of us are.  My passion is self-determined inclusion.

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