That transforming 21st chromosome

IMG_3101At this week’s AUCD conference, I got to see how the 21st chromosome has transformed since 1970.

Members of the National Center for Prenatal & Postnatal Down Syndrome Resources presented a breakout session at this year’s annual conference for the Association of University Centers on Disability (AUCD):

  • Harold Kleinert, director Human Development Institute, the UCEDD for Kentucky;
  • Stephanie Meredith, director of medical outreach and author of the materials recognized by professional medical organizations;
  • Mitchell Levitz, review board member for the Kennedy Foundation; and,
  • Myself, bioethicist for the National Center.
Nat'l Ctr panelists at AUCD 2014

National Center panelists at AUCD 2014

Stephanie shared an insight she had gained from looking at the history of what it meant to be a person with Down syndrome.

She commented on how the extra 21st Chromosome must have transformed over the decades. How else to explain the life expectancy rising from under 10 years of age at the turn of the last century to now being over 60? Or, that individuals with Down syndrome were not expected to even read a half century ago and now more and more are working in professional offices.

Of course, her point was that the 21st chromosome had not changed whatsoever. Instead, what had changed was society and its expectations and acceptance of those with Down syndrome.

Our co-panelist was living proof of this transformation.

Mitch Levitz spoke of how when he was born in 1970, his parents were counseled about institutionalizing him. But instead, they brought him home and loved him. He went on to read Hebrew at his bar mitzvah, graduate from high school, and have an office job at his local UCEDD.

Having spoken at dozens of these types of panels, I was impressed by Mitch’s remarks. Not only for the substance, but also for the style. Mitch spoke without notes, extemporaneously, and not from some rote script. Public speaking is often rated one of the top fears, but clearly not for Mitch.

I doubt many parents today, when they are told their child has Down syndrome, can envision their child working at a university office and speaking at a national conference. But, Mitch is just one example of a growing number of individuals with Down syndrome living such lives.

Nothing has changed about the extra 21st Chromosome. But the opportunities for those who have it certainly have.

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