WHO ARE THEY AND WHAT DO THEY WANT?

Lou Brown

	People often ask why do we have TASH?  Do we not have a sufficient number of organizations?  Is there really a need for a separate group of people to represent the needs of the lowest intellectually functioning 1% of our population?  Why are TASH people so ideological?  Why are they so demanding?  Don’t they realize that are running into windmills?  Do they really believe that those folks can amount to anything?  Aren’t they wasting their career and lives?  Why don’t we put our resources behind those with more potential?  Why don’t we just join CEC, ARC, AAMD, QRAB?  Why……..

The reason we have TASH is because if the late 1960’s and the early 1970’s it was abundantly clear that no other organization was representing the ideological, research, financial and programmatic rights and needs of the lowest intellectually functioning 1% of our population.
           From the very beginning TASH was a value based organization.  Certainly the original members were interested in conducting research, in producing trained people and in getting laws passed.  However, this basic purpose was to try to engender a decent quality of life for the most vulnerable, disabled, segregated, abused, neglected and denied people in our society.  Specifically, those who were quarantined in horrible institution wards that were endorsed by AAMD, those who were excluded and rejected from public schools by too many members of CEC; those who were confined to segregated activity centers and workshops that were owned and operated by ARC’s and those as young as age 15 who were sentenced to nursing homes that were certified as acceptable by Human Service agencies and professional certification boards.  

	In the early days of TASH we wondered, if professionals are going to devote their careers to people with severe intellectual disabilities, if mothers, fathers, brothers and sisters are going to spend enormous energies and resources over long periods of time getting services for them, if legislators are going to be lobbied to pass legislation and secure tax dollars to benefit these people, what is it that we want?  What are we striving for?  It soon became obvious that we should want the highest possible quality of life for 24 hours a day, 7 days a week, 365 days a year for a long as possible. 

	If we start with the value that the lowest intellectually functioning people in our society should have all the resources, longitudinal support, respect, dignity, legal protections and other phenomena necessary for them to be the most  that they can be, to experience the highest quality of life and to make contributions to the community in accordance to their abilities.  What is it that we need to make these dreams, hopes, values and goals realities?

	Several factors seem critical.  First, we must always have a penetrating, thought provoking, constantly evolving set of values that tell us where to go, that guide our way, that get us through the rough spots and that keep us focused on our targets. Second, we must find ways to attract the brightest, most creative, most dedicated, most effective, most relentless young professionals to devote their professional lives to the enhancement of the lowest functioning people in our society.  We realized early that we were focusing upon the most difficult to teach, the most challenging to engender independence and to assist realize reasonable personal fulfillment.  Thus, the people who worked with them must be the most talented.  Third, while we need a reverence and a respect for the past, we also must relentlessly pursue something that is better than we have today.  Even if we operationalize the best possible services realizable today, we would still have a moral obligation to make them outdated tomorrow.  Unfortunately, this put us at odds with some of the best of the past.

	From the very beginning one of the clear goals and one of the more consuming activities of TASH members has been to use all reasonable resources necessary to convince the most talented, productive, committed and ideologically sound young people we could find that they should pursue careers serving people with severe intellectual disabilities.  We in the recruiting business have made our mistakes and we have had our disappointments, but in general we are on the right track.  Sometimes, it is frustrating to be an old timer.  Perhaps the following communicate some of my feelings.

Some come, sell their kits, make their money and leave.  Some come, get tired and then find something less demanding.  Some come, take a break and then return to fight again.  Some come, want to stay and fight, but they are taken.  Some come, fight, struggle, realize they cannot leave and keep fighting.

	Who are Burton Blatt, Gunnar and Rosemary Dybwab, Bill Bricker and Marc Gold?  They are professionals who made differences in the lives of people with severe intellectual disabilities.  They are people of vision, intelligence, wit, commitment and charm.  They are people who guided us in the early days.  They showed that all people could learn, all people had the right to live in decent homes, that people should not be abused, that all means all and that inclusion is better than exclusion and rejection.

	Who are Judge Ellenson of Oklahoma, Judges Broderick and Becker of Philadelphia, Judge Mehredge of Virginia and Judge Vance of Alabama?  They are some of the many Federal judges in the United States with wisdom, compassion, insight, integrity and sensitivity to the needs of people with severe intellectual disabilities.  They have affirmed that citizens who are severely intellectually disabled should live in integrated communities, not in horrible, rotten, degrading and immoral institution wards; should go to schools with their brothers, sisters, friends and neighbors and not to segregated schools that prepare them for nowhere but other segregated environments and have the right to be free from harm, to public reject and to access to public environments.

	Who are Mary Teatro of Texas, Mary Ann and Bob Roncker and Mary and Tom Ulrich of Ohio, Leona and Marion Failkowski and Audrey Coccia of Pennsylvania, Vern and Frieda Heinrichs of Toronto, Bob and Charlotte Alghren of Illinois, Connie and Harvey Lapin of California, Mary Yaris of Missouri, Matt and Eva Redick of Ohio?  They are Mothers and Fathers who did not plan to have a child who was severely disabled.  Who, given the choice, probably would not have picked one.  Nevertheless, they produced such children,.  They could have sent them away.  They could have locked them up and they could have quit, but they did not.  They devoted unbelievable amounts of energy, resources, soul and love to the betterment of their children and others like them.  In most instances, it was not their children who benefited from their efforts, but those who followed.  We all owe tremendous debts of gratitude and continuous expressions of appreciation and respect to these relentless fantastically effective and creative people.

	Who are Tom Gilhool, Dick Cohen, John McIntosh, Reed Martin, Carol Luckt, Stan Eichner, Frank Laski, Tim Cook, and Bill Dessault?  They are lawyers.  They are people who have expended their professional energies trying to insure that one third of the government of the United States, the judicial system, works for the most disabled and most vulnerable people in our society.  They are the ones that got Pennsylvania to stop excluding children from public schools and to start closing its institutions.  They are the ones who got the Supreme Court of the United States to say all means all.  It is hard to imagine where we would be without these tough, brilliant and remarkably effective legal Don Quixotes.  

	In the end what do we want for the lowest functioning people in our society?  To me the answer is remarkably simple.  First, we want the healthiest possible bodies.  Second, all people should grow with friends, neighbors, brothers and sisters.  Third, all people with severe disabilities should live in decent homes and the best we have ever come up with is the family unit.  Fourth, all people with severe disabilities must be allowed the opportunities and resources necessary to produce real work in the real world, to make contributions to the enterprises of their communities.  Fifth, all people must experience the richness and variety of their communities and all people must become involved in the same recreation/leisure resources and activities utilized by others.

	What we don’t want is denial of medical treatment, aversive conditioning, handicapped only schools, institutions, workshops, enclaves, group homes, nursing homes, retarded camps. Special Olympics and other manifestations of segregation.