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Frank Stephens, a man with Down Syndrome fights his right to live

  • Frank Stephens gave a powerful speech at the congress hearing.
  • Frank Stephens encourages people to fund vital research on Down Syndrome and its link to Alzheimer’s during the congress hearing.
  • The extra chromosome that people with Down Syndrome can be a reason for Alzheimer’s disease.

A child born with Down Syndrome has increased life expectancy from 25% in the early 1980’s to more than 50% today. A child with Down Syndrome has brighter prospects than at any other point in history. Although, the abortion rate for fetuses diagnosed with Down Syndrome tops ninety percent. In Iceland, every fetus with the condition is killed. The law in Iceland permits abortion after 16 weeks if the fetus has a deformity––and Down syndrome is included in this category.

Many of the people living with Down Syndrome are dismayed at the implication that their extra chromosome hinders their life to be “worth living.” Most of people with Down Syndrome have a full extra copy of chromosome 21, so they have three copies instead of the usual two. The extra copies of genes present in Down syndrome cause developmental problems and health issues. Scientists think that the increased risk of dementia in individuals with Down syndrome may also result from the extra gene.


The context of the testimony of Frank Stephens, a man with Down Syndrome fighting for his right to live, urges allocating federal money to research that would help people with his condition rather than proceeding as though the best way to address it is prenatal testing and selective abortion. Frank Stephens is a Quincy Jones advocate. His statement was this:

Mr. Chairman and members of the committee,

Just so there is no confusion let me say that I am not a research scientist. However, no one knows more about life with Down Syndrome than I do. Whatever you learn today, please remember this: I am a man with Down Syndrome and my life is worth living.

Sadly, across the world, a notion is being sold that maybe we don’t need research concerning Down Syndrome. Some people say prenatal screens will identify Down Syndrome in the womb and those pregnancies will just be terminated.

It’s hard for me to sit here and say those words.

I completely understand that the people pushing this particular “final solution” are saying that people like me should not exist. That view is deeply prejudice by an outdated idea of life with Down Syndrome.

Seriously, I have a great life!

I have lectured at universities, acted in an award-winning film and an Emmy-winning TV show, and spoken to thousands of young people about the value of inclusion in making America great. I have been to the White House twice––and I didn’t have to jump the fence either time.

Seriously, I don’t feel I should have to justify my existence, but to those who question the value of people with Down Syndrome, I would make three points.

First, we are a medical gift to society, a blueprint for medical research into cancer, Alzheimers, and immune system diroders. Second, we are an unusually powerful source of happiness: a Harvard-based study has discovered that people with Down Syndrome, as well as their parents and siblings, are happier than society at large.

Surely happiness is worth something? Finally, we are the canary in the eugenics coal mine. We are giving the world a chance to think about the ethics of choosing which humans get a chance at life. So we are helping to defeat cancer and Alzheimers and we make the world a happier place. Is there really no place for us in the world?

Is there really no place for us in the NIH budget?

On a deeply personal note, I cannot tell you how much it means to me that my extra chromosome might lead to the answer to Alzheimers. It’s likely that this thief will one day steal my memories, my very life, from me. This is very hard for me to say, but it has already begun to steal my mom from me. Please, think about all those people you love the way I love my mom.

Help us make this difference, if not for me and my mom then for you and the ones you love. Fund this research. Let’s be America, not Iceland or Denmark. Let’s pursue answers, not “final solutions.” Let’s make our goal to be Alzheimer’s free, not Down Syndrome free. Thank you.

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