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Living with Down Syndrome

Pete Springer/OPB

In our “wrongful birth” show last week, we discussed the legal and ethical issues surrounding a Portland case that involved incorrect genetic test results. A Portland couple successfully sued their health provider for nearly three million dollars, saying they would have chosen to abort their pregnancy rather than give birth to a daughter with Down Syndrome. So many people called into that show with stories about their experiences with Down Syndrome and posted comments like the one from Stephanie below, we felt the issue needed its own show. She writes:

This court case would have been irrelevant if our communities were more accepting of people with disabilities. If a child with a disability was born into a world that accepted them and understood their support needs and that of the family the world would be a better place. There is this unspoken/spoken stigma that a child with a disability is your “burden” to bear and that they are not citizens worthy of support.

A comment from Julianne pointed to the negative picture of Down Syndrome that she says many prospective parents get:

The modern reality is that so many of these kids are closer to typical than they are disabled. My daughter is one them. She was diagnosed prenatally, and we chose to go through with the pregnancy. We actually met [a family and their] son with Down syndrome, and he and they as a family were incredibly inspiring to us. They showed us that the doctors were heavily swayed toward worst case scenarios. With early intervention and attention to her developmental needs, most children with DS are nothing like what doctors often present at the time of a prenatal diagnoses.

Those reflected the majority sentiment on our site, but we also heard a different perspective from commenters like scottmil:

It is unfortunate that people feel a need to twist reality by proposing that Down syndrome can somehow be a ‘good thing’ … It is like saying ‘the bomb will bring us together.’ Yes, we all may coalesce at wartime, or even around a friend with cancer, but I think we would all prefer no war (and cancer). People may make the best of the situation, and that is a great thing—-but certainly, most people would not wish for a child with Down syndrome…

Do you have direct personal experience with Down Syndrome? Do you have a child, student, friend or loved one with DS? What’s your relationship been like? What would you like people to know about your experience?

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