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‘I don’t feel like I should have to justify my existence’ – Down syndrome man’s speech to Congress

4 min read

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‘I don’t feel like I should have to justify my existence’ – Down syndrome man’s speech to Congress
Source: Youtube/LADbible

Frank Stephens made a poignant speech against screening for the genetic disorder with the purpose to terminate, calling it a ‘Final Solution’.

“I am a man with Down syndrome and my life is worth living,” — Frank Stephens tells Congress

“I am a man with Down syndrome and my life is worth living,” Frank Stephens told the House Subcommittee on Labor, Health and Human Services in a powerful testimony on Capitol Hill last week. In a scene reminiscent of Charlotte Helene Fien’s recent speech to the United Nations, he continued: "I don’t feel like I should have to justify my existence."

Some countries have declared that abortions will make them “Down syndrome free by 2030”

“I am a man with Down syndrome and my life is worth living,” Frank Stephens told the House Subcommittee on Labor, Health and Human Services in a powerful testimony on Capitol Hill Wednesday. 

As a Quincy Jones Advocate at the Global Down Syndrome Foundation, Stephens made a passionate plea for more research to continue on the Down syndrome disease, noting that since pre-natal screenings will identify Down syndrome in the womb, many of these pregnancies are being terminated.

He stated that government officials in many countries, such as Iceland, Denmark and South Korea, have declared that abortions will make them “Down syndrome free by 2030.”

“Let’s be clear, I completely understand that the people pushing that particular ‘final solution’ are saying that people like me should not exist. They are saying that we have too little value to exist. That view is deeply prejudiced by an outdated idea of life with Down syndrome,” he said.

“Seriously, I have a great life. I have been a guest lecturer at major universities. I have contributed to a best‐selling book, had a feature role in an award‐winning film, guest starred on an Emmy winning TV show, and spoken to thousands of young people about the value of inclusion in making America great.  I’ve even been to the White House twice, and I didn’t have to jump the fence either time,” Stephens added, as the room erupted in laughter.

He observed that the “extra chromosome” in people with Down syndrome “makes us a blueprint for medical research that could reveal answers to cancer, Alzheimer’s and immune system disorders. Not to mention the fact that people with Down syndrome are happier than society at large.

“I know happiness is not something you can assign dollars to, but surely it must be worth something,” Stephens declared, struggling to speak, but with intelligence and emotion.“Let’s be America, not Iceland or Denmark. Let’s pursue answers, not ‘final solutions,’” he pleaded.

If you would like to read Frank’s speech in full, CLICK HERE. 

Source: DMLNews

Frank and his parents, John and Cornelia, at The White House “They have given me structure and love and support in whatever I want to try to do. They have shown me that they believe in me and what I can do. We don’t focus on what I can’t do because of Down syndrome.” Source: GlobalDownSyndrome.org

The NIPT: what exactly is it and what is wrong with it?

The NIPT (Non-invasive prenatal test) is a dna-test that can detect Down syndrome in an unborn child by examining a drop of blood of the mother. In over 90% a diagnosis leads to the termination of the pregnancy. For ex. Denmark reported a 98% selection rate for Down syndrome in 2014.

Difference between test and screening:
A 
test can be used to diagnose a disease or health condition on an individual basis.
A screening is the practice of testing (a specific group of ) the population to detect a health-risk and/or enable treatment.

Many governments (including the Netherlands, UK and France) have proposed to implement dna-screening focused on detecting Down syndrome into their National screening programs.

Why a National screening program for Down syndrome is not in accordance with World Health Organisation (WHO) screening guidelines:

In 1968 WHO published their guidelines for screening (also called Wilson’s criteria)
•there should be an acceptable treatment for patients
•the cost should be economically balanced in relation to expenditure on medical care  

A National screening program for Down syndrome does not fit these guidelines because:
•there is no treatment for Down syndrome
•the high cost of dna-screening is only balanced when a high termination rate is achieved within the population

Down syndrome screening is offered as a free choice to women to increase their reproductive options.
The Nipt currently has a price tag between 500 and 900 Euros (550 and 1000 US Dollars).
With Down syndrome occuring approximately once every 700 pregnancies this means a pricetag of between 350,000 and 630,000 Euros (385,000 and 700,000 US Dollars) per detected child with Down syndrome.

Under these financial conditions it is practically impossible to guarantee a ‘free reproductive choice’, because the number of women taking the test to ’emotionally prepare’ for a life with Down syndrome is low, dna-screening is not economically balanced and parents and society would benefit much more when the half million Euros per detected child would be put towards improving care and social programs.
A certain termination rate has to be achieved to make standard dna-screening economically balanced.

Why does a National screening program violate human rights of persons with Down syndrome:

The 
UDHGHR (Universal Declaration on the Human Genome and Human Rights) states that no one shall be subjected to discrimination based on genetic characteristics and that individuals should be respected in their uniqueness and diversity.

The UDHR (Universal Declaration of Human Rights) acknowledges that the rights of men are equal to the rights of women and equal to the rights of people with disabilities.

UNESCO writes in it’s October 2015 report on the Nipt “Because the Nipt can be carried out at a very early stage of the pregnancy it would be difficult, even impossible for doctors to forbid the communicating of sex to the parents. This could lead to a selection based on sex, which is against ethical values of equality and non-discrimination.”

The same principle is therefore valid for selection based on genetic variation such as Down Syndrome.

“In addition, a widespread use of NIPT as general screening may induce ‘eugenic’ use, even when the state is not involved. The adding up of a lot of individual choices to the ‘acceptability’ of aborting certain kinds of embryos or fetuses brings forward a societal phenomenon, which resembles a kind of eugenics in the search for a ‘perfect child’.”

Source: Facebook/StopDiscriminatingDown

Frank Stephens’ White House introduction by President Obama President Barack Obama introduces Frank Stephens at the July 2014 event held at the White House for Special Olympics. Source: Youtube/dthomasanova

Links to recent Bright Vibes articles about people who are rocking their extra chromosome

  • To see our article on Charlotte Helene Fien’s ‘Right to Life’ speech to the United Nations concerning the NIPT screening for Down syndrome (including 17-year-old Kathleen Humberstone’s speech to the UN), CLICK HERE.
  • To read our article on award-winning Spanish actor, author and inspirational speaker, Pablo Pineda, who also has Down SyndromeCLICK HERE.
  • To see our article on aspiring actress, model and all-round Superstar, Sofia Sanchez, CLICK HERE.
Make an Impact

Sign the international petition against the test (Nipt)

Babies born with Down Syndrome today can look forward to a long and qualitatively good life. In fact, research on this population shows that people with Down syndrome and their families rate their quality of life above average. If this test and its implications horrify you, you may want to sign the international petition against it.