A ways to go. . .

When I consider what is, or rather is not, available to people with Down syndrome and their families in some countries - particularly Eastern Europe - I realize how fortunate we are. We have access to good health care, we have early intervention for our kids which gives them a great advantage in reaching their potential, we have schools with educators trained specifically in working with kids that have special needs. We are fortunate.

Yet there are so many people out there - educated men and women, many in the medical and academic world - who believe that kids with down syndrome do not have a place in this world. Professor Albert Harris from UNC - Chapel Hill is one of those people believing that women have a moral obligation to test for and then terminate a child with Trisomy 21. This is a personal affront to families that have children with Down syndrome. This is what we are fighting against. This is the mindset of the professionals that are pushing for early testing and then scaring the life out of parents-to-be when they do get a positive diagnosis for Ds. It is profoundly irresponsible. This is not just about the ethics of abortion. These professionals are not giving an accurate picture of Down syndrome. How can those practicing medicine and teaching in our universities, with all the incredible advancements in medicine in this country, have such an antiquated understanding of Down syndrome?

Dr. Harris' comments in class have created an uproar. I, personally, am grateful to the student who spoke up in his class. We need more Lara Frame's. The National Down Syndrome Congress also spoke up when Dr. Harris' opinion was brought to their attention. Following is their statement:

Atlanta, GA -- February 22, 2008 -- According to a Raleigh News and Observer report and articles in a number of other journals, biology professor Albert Harris of the University of North Carolina, Chapel Hill, has stated, "In my opinion, the moral thing for older mothers to do is to have amniocentesis, as soon during pregnancy as is safe for the fetus, test whether placental cells have a third chromosome #21, and abort the fetus if it does," While Professor Harris qualified his statement as his "opinion" the National Down Syndrome Congress (NDSC) finds the professor has violated basic academic standards by expressing an opinion based on personal, anecdotal experience in a classroom setting. Reports suggest that Harris did so to spark discussion and debate. The NDSC would welcome that; however, we find Harris adds nothing to a debate which has been ongoing for sometime. He cites the fact that his opinion is based on the experience of one acquaintance whose life was, according to him, "ruined' by a child with Down syndrome. Instead of basing his opinion on facts, his own research or a clear understanding of the key points underpinning the debate, Harris has inserted his personal and quite obviously prejudicial opinion into an academic forum. In doing so, he has abused his responsibility to his students, colleagues and university. He has also inflicted unnecessary pain on people with Down syndrome and their families. Down syndrome is the most common naturally occurring cause of developmental delay. Occurring once in every 800 to 1000 live births, the syndrome affects approximately 350,000 Americans. Down syndrome impacts people across an extremely wide range, however it is rare for it to be, in fact, ruinous by any definition. The contrary is more often the case. NDSC Executive Director David Tolleson notes, “We are in constant contact with a large, vigorous national and international community of people with Down syndrome, their families and the professionals who support them. Additionally, published academic studies have found that most people with a family member with Down syndrome consider the experience to be a positive one.” Far from ruining lives, our families consistently report that their sons, daughters or siblings with Down syndrome enhance their lives and bring them great joy. A quick scan of the internet will produce many examples of people with Down syndrome who are embraced and valued by their families and communities. In the post secondary world, people with Down syndrome increasingly attend college and take their places as loyal, productive and valued employees. We question how any of that can be termed "ruinous."We therefore ask Professor Harris to retract his statement. In doing so, we also request that the professor make an appropriate apology to his students, explain clearly that his statement was a personal opinion and has no scientific basis and make every effort to convey to them current, accurate facts regarding Down syndrome. Should Professor Harris decline to do so, we call upon the University of North Carolina to investigate this incident and take appropriate disciplinary action.


KathyR said...

thanks for this post..very well put.
another thing that people can do to bring awareness to the incredible bias that some doctors have against unborn babies with Down syndrome is to sign the petition here:
The plan is that people who sign it can then print it out on March 20th and send it to their representatives in Congress on March 21, which is World Down Syndrome Awareness Day (3/21) and ask them to support the Brownback-Kennedy Prenatally and Postnatally Diagnosed Condition Awareness Act.

Jen said...

I just don't understand how people can think these things Stacy! It is just mind-boggeling to me - they must not know a single person with Down Syndrome.
Hope you guys are feeling better - I have something today - not sure what it is - maybe mild flu!

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