Special People, Challenging Decisions

December 28, 2003

While I cannot remember any of the athlete's faces (only flashes), and I cannot remember any of the names. I will never forget the spirit, the smiles, the joy and the appreciation I saw and felt that day. It was a Special Olympics meet. At an age when most of us are somewhat self absorbed. I certainly was, the experience left me with surprising clarity on several counts:

How fortunate I, and seemingly everyone in my life was to be blessed with bodies and minds that were complete.

How much we all took that for granted.

How little I knew about mental retardation and other disabilities. In my day we had a special ed classroom and had not heard of mainstreaming.

How, despite our societal insistence on putting these people away neatly in a box, how forgiving they were and how grateful they were for interaction.

And perhaps the greatest gift was how, in their simplicity, what clarity they had for truly enjoying the experience of the moment, the sheer joy of participation, the excitement of achievement and the love of interacting with other human beings.

That day, I learned humility and the joy of mindful living --- I am so grateful for that day and I am ever grateful for some special friends who unwittingly taught me so much.

Today I am a little frightened, a little confused and very challenged. Frightened by science - as the envelope is pushed further and further into the womb and even outside of the womb, giving us abilities to define our future in terms of who will be in it - and further what characteristics do we want them to have. Confused and challenged. because I don't know what the answer is and I don't like not having an answer.

It is clear that we will face difficult decisions, as individuals and as a society. WE live in a day that cloning happens. We live in a day that doctors are entering the womb and doing amazing things. Who wouldn't want to eliminate heart defects, lengthen lives and eradicate mental retardation? And just this past week who didn't get pulled in by the story of the two young women from Iran conjoined at the head who lost their lives in their decision to be separated. But with the enormous gifts of science comes the possible misuse and abuse of such capabilities. Will we be able to choose IQs along with gender, hair and eye color? At one end of the spectrum in our zeal to isolate genes for certain criminals will we inadvertently also lose great musicians, artists and mathematician? - or those with endless stores of compassion, empathy or kindness? .............

Will we work so hard, to make everyone "normal" that somewhere along the way we lose a piece of our humanity that these "special people" play guardian to?

As I explore these concerns through four stories today I invite you to look hard at this issue. It is coming and we need to be ready.

Returning to my own story - I went on to volunteer at the Fernald State Home where I met older, some severely retarded residents. Some of those faces I do remember, because I was so startled. It's a memory that if flashed without context in front of someone else - they might guess it was out of a horror film. I remember even more vividly some of the hands. For it was there I saw how important the need to touch was, and how very simple it was to give another human being what it was they needed and asked of.

Fast forward now, nearly twenty years and I was approached by someone needing help with a Special Olympics Swim Team. Like many of you, I had not a speck of time left in a very busy life . . . . husband. four children aged 11 and down and there I stood--unable to say no because of what the experience meant to me in high school. I agreed but with the stipulation that my children would be part of the package. It is a decision I have not regretted. For so like so many Special Olympics volunteers I know that I get far more than I give in this arrangement.

It is interesting to me that it is the only organization that I have ever been involved in that we are rarely at a 1oss for volunteers -- rarely.

We are grateful, as a family, for the opportunity. But not to be lost in that gratitude is the important questions -- is our enrichment a good enough reason to say we should not look hard and long to eliminate mental retardation and other disabilities?

There's a Shaw's supermarket in the Merrimac area where everyone heads not for the shortest line but the longest. The reason is my friend Dean. He brings a smile to my face just by thinking about him. Everybody adores Dean. He always had a word or two to brighten up an already sunny day or pull someone up out of a gloomy one. Letters have been written to his employers and parents about how he makes people feel good. He is an accomplished swimmer - a beautiful breaststroke and a distance swimmer - -something that takes discipline and control - especially if you swim an extra lap just to make sure. He is one of the most polite, most considerate and kind people I have ever met. He is a wonderful role model both to the other swimmers and my youth volunteers and in fact to me- Actually he is a wonderful role model to anyone. His parents, Dave and Ruth, are terrific people as well. More than once they've been told "You're so lucky you got one like him," with the second sentence left unsaid but heard - you know ---- rather than one of those difficult retarded kids. Because Dean has Down's syndrome and an IQ of 48. Dave and Ruthie will tell those people they have three more just like him at home. Because they know and see that Down's Syndrome does not define their son. Despite a society that has embraced this particular young man to a sometimes overwhelming degree - despite his ability to work (two jobs) - despite assurances of his well-being in the future, with siblings who will fight over who he will live with - despite all that - this family is cognizant of a world which does not truly claim ownership to those with mental and physical disabilities.

I am grateful for knowing Dean and his parents.

My friend Ali has a certain grace about her that I particularly admire. It's not her beautiful, thick, black hair or her good sense of fashion - she has both - and it's not her gifted piano playing - it's something about the way she interacts with people. Her parents, Pat and Al, are very graceful people too - as are her siblings. There is just something very special about the way they care - about each other and the rest of us. Pat tells me that she is a different person - a better person because of her life with Ali. That she has gone to places emotionally physically and spiritually she would have never been before. That her other children have sought careers in social services because of life with Ali. That journey was driven by Ali's mental retardation and physical handicaps - things her parents detected in her early years. As a family they have faced many struggles, some I'm sure unimaginable for us to think of - those of us who finish dealing with a hospital stay for croup or just chicken pox or the flu in the whole house - we finish and say, boy I don't know how we got through that! The key word for us - is through that - it's over. Our answer is the same, however. You just do it, because that's your child. Pat and Al, like Dean's parents, plan for a future in ways most of us needn't bother. But Pat also sees a future brightened with four children contributing so much to society through their work, and a special young lady who brings music to our ears. I am grateful for knowing Ali and her family.

I have another friend. She's a lawyer, a mother of two young, very active children. Like any good UU - she's on a number of committees - chairs at least one and is difficult to say no to because she does so much. Just in case she didn't have enough to do - she's now taken up writing children's stories. Her name is Jami and she is also afflicted with Friedrich's Ataxia, a disease that progressively takes her away her physical control of her body and her life. A disease with an average life expectancy of 37 years. She turned 39 this year. To know her is to love her and to be inspired by her strength and determination. As her health declines she is writing these hooks to help her children and other children in similar positions to understand. She worries a lot about the final years and how to best prepare them for her death. She also struggles with a world eager to limit her even more than her own disease has.

I am better for knowing her. It is easy to say that this life, albeit expectedly shortened, is a life that gives so much to all of us - how can it not be a life worth preserving? What if science was able to tell her mother? What if her mother --- or science -- or society made a different decision? I am grateful for knowing Jami and her family.

So much to be grateful for -- what's the problem? What's coming is the issue for me--with the unlocking of the helix and DNA tracking I have little doubt that we will be able to pick and choose characteristics of the yet-to-be-born. Science is evolving faster that we are --leaving the door wide open to jump on decisions without really thinking them through. We're a world able to deliver statistics and findings instantaneously and with amazing accessibility -yet these findings and statistics change. In the instance of Jami and her husband Stephen, statistics played a part in their decision to have children. Given a parent with Jami's disease the odds that their child would inherit that disease were 1 in 1,200. The odds of inheriting any birth defect are 1 in 333. By the time they were expecting their second child the odds had already changed leaving their children with odds of 1 in 100 - rather than the 1 in 1,200. Science doesn't always evolve on even ground - it is ever changing.

A movie 1 saw recently had a profound effect on me - perhaps planting a seed that brought me to this sermon today. In the movie a couple was pregnant. The father to be was a geneticist and performed some tests. The results were that the fetus was free from disease and deformity but carried the gay gene. The rest of the movie dealt with the struggle of whether or not to have this child. The uncle-to-be of the child was gay; the grandparents had issues with his struggles. It was very complex. I won't tell you how the movie ended but it was, I think, a very real look at what information, we're not really equipped to deal with -- can do to us. And I don't thoroughly know what that means----but it has something to do with trying to presuppose whether a life, possibly fraught with struggles, is worth living. Whether such a life is a good choice if instead one could choose a less difficult one - worries the heck out of me.

The enormity of this is startling. Making decisions to predetermine who our future will be -what will they look life, what will their IQs be, what will we deem valuable as traits - what DO we deem valuable as traits? Underlying my concern is the fact that we don't necessarily like to view ourselves as inclusive of some of the people I've discussed today. It's one thing to talk about the inherent worth and dignity of everyone - of diversity, tolerance, acceptance it's quite another to talk in true terms of THIS IS WHO WE ARE-----ALL OF US AND WE ARE BETTER PEOPLE WHEN WE ARE "US" --- WHEN WE ARE TRULY AND PROUDLY INTERCONNECTED.....So as we face these complex decisions that science will inevitably place in our hands I urge us all to be grateful first for all the pieces of our human web and mindful that those holding the true expertise are the special people I've talked about today and their families who have dealt with the real issues day-in and day-out. As Ali's mother, Pat, said "They may be small, very small voices - but they need to be heard."

Thank you for sharing this journey with me today. I'll leave you now with a story about Dean and his father. Dave. They were visiting Dean's sisters Heidi and Wendy. The two girls were working at a lab with signing chimpanzees. So in enters Dean with an IQ of about 50 and in walks dad, David, with an IQ of about 150. The chimpanzee, again quite fluent in sign language - starts talking to Dean, who also knows how to sign. Dean returns the conversation and this goes on for quite a bit. Father Dave watches in fascination. While he is doing so, the chimp catches his eye and turns to him. The chimp goes like this (show signing here.......) Dave just watches. The chimp again goes like this (.......) Again Dave continues to watch. After several more attempts the chimp finally goes like this (.......sign here). Dave, finally realizing something has transpired calls to one of his daughters and finds out------------ "Dad - he wanted to play a game with you --- when you couldn't respond ---- he called you stupid."

Perhaps the greatest challenge we have in the face of "Scientific breakthroughs" is first recognizing our own arrogance and limitations when we presume our definition of "stupidity" and unworthiness is better that that of the chimpanzees.

So be it with us today. So be it with us always.

Wendy von Zirpolo