Friday, January 7, 2011

Praying for Acceptance and Change

This afternoon, as I sat and read the DSACT end of the year newsletter I came to a startling realization--the United States, as a nation, has really come a long way in terms of school inclusion and the support of people with developmental disabilities.  True, things are not perfect (not even close!) and we have a very long way to go, but it is much worse in other countries and I cry for those parents and for those children.  I cry for those parents who are embarrassed by their child.  I weep for those parents who want to help their child to reach his/her best potential, but are continually shut down and for those parents who do not know who to turn to. My heart breaks for those children who feel shunned and are constantly told "no, you can't".  I want to shout "IT DOESN'T HAVE TO BE THIS WAY!"  

Fortunately, people are fighting back.  Some of you might have seen the DS in the 21st Century video on the bottom of the Down Syndrome Association of Central Texas [DSACT] website.  The video was designed to educate health care providers and then it become a source for new parents.  The awareness spread as far as Poland and perhaps beyond.  

Recently, members of DSACT attended the 1st ever GRAAL (Okay, GRAAL is NOT a gaming place like Google says. It is actually a Polish Down Syndrome Webgroup) conference on DS in Krasow, Poland.  It all started because of this video.  A short, but impressive, life-changing video.  What amazes me is that Poland has one of the highest rates of DS per live births and yet there is little acceptance of a child with intellectual disabilities.  I am not picking on Poland mind you. . .okay maybe I am a bit, but perhaps it is best that I share with you some points from the newsletter as written by the DSACT President Suzanne Shepherd:

Suzanne: "I spoke about DSACT – who we are, what we believe, what we offer, how we do it, our problems and best practices. Somehow I figured out how to click through the English version of the PowerPoint on my monitor and the Polish translation on the large screen. I emphasized that we are a grass-roots organization; a group of very energized family members and supporters of people with DS who hold ourselves to high standards and try every day to make life better for people with DS in Central Texas. Our Polish audience was impressed by the incredible array of programs, services, information, resources and tools we provide for people with DS, their families, doctors and teachers.

Following my speech, the head of the Warsaw DS organization took the stage. I expected a benign speech about progress in Warsaw toward integration. Wrong! Instead, she denounced the concept.

As the parent of a teenager, she [head of the Warsaw DS Org] had tried and failed to integrate her daughter at school and in the community. Her daughter had been hurt and rejected, she said. This woman’s lesson, then, was that integration does not work. “While the American lady [Suzanne Shepherd] might think that it’s working in Texas, this is in her imagination. If a child with DS can accomplish so much, why then do new parents feel grief when such a child is born? Some form of integration might be possible in the U.S., but not in Poland. Polish society would never be ready to include people with disabilities.” With no time for questions, I had no opportunity in that session to refute her negative,pessimistic views."

More from the Newsletter: "GRAAL President Magdalena Chaszczynska was part of the panel in this session; she emotionally told the audience that she had heard from too many parents of children with DS telling her that they and their families were ashamed of their child; that they were unwilling to take the child out to a restaurant or store; that they did not know how to accept this child as a full, valued member of the family. She urged them to move past these feelings.

As I was reading the last paragraphs, I started to sputter.  For real?!  This reminds me of the times when Aunt Peggy was born or maybe even before that--a time when children who were different were institutionalized. When a child receives a medical diagnosis, the parents will feel grief for many reasons (in Poland, in the US, etc.) and perhaps it is because people do not know just what children with DS can do.  How wonderful each and every child is. The potential of every child--disability or not.  I was fortunate to grow up in a wonderful family that includes people with disabilities so I somewhat knew what to expect once Ellie was born, but most people do not have those experiences.  I want to be so angry at this woman [head of the Warsaw chapter] as she is supposed to provide guidance to the members of her organization, but then I wonder if she has perhaps become so jaded because she was fighting the system alone.  

The conference ended on a happy note with attendees feeling inspired and energized.  A second GRAAL conference is already in the works and some GRAAL members anticipate attending conferences on DS in the United States. Things are not perfect here and they are not perfect in Poland or anywhere else for that matter.  Acceptance is a never-ending battle. Perhaps we can all learn something from each other, become inspired, and fight for our children.

Hoping for improved societal acceptance, school inclusion, better health care, parental support, community support, and love.  

My Passion.  Who I am fighting for.


Note: I truly have nothing against Poland.  The DSACT newsletter was about a conference in Poland and some of the comments quoted in the newsletter really lit a fire in me. These views are entirely my own and are no way affiliated with DSACT or GRAAL.

Reference: Shepherd, Suzanne. (December 2010) From Austin to Krakow. Down Syndrome Association of Central Texas: Down in the Heart of Texas. Volume 8, Issue 5; pages 2-3. Website: January 7, 2010 on

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