Stories about: intellectual disability

Living with an intellectual disability: One couple’s story

living with an intellectual disabilityMarni (my sister) and Kris Jamieson have mild to moderate intellectual disabilities. They grew up in Queens, N.Y., met in their teens and married in 1993, as chronicled in the documentary film we made together, Lifestyles of the Poor and Unknown (2001). Marni still shows the film for staff training purposes at her chapter of The Arc, which serves people with intellectual and developmental disabilities. Today, Marni and Kris live in upstate New York in supportive housing with the help of The Arc. Now age 50, Marni will celebrate her Bat Mitzvah in June.

Q: What was the hardest thing about growing up with a disability?

Marni: School. When I was a lot younger, people would say I was retarded because I learn slower. And that used to make me cry. And I had my fair share of bully problems.

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Obama signs Rosa's Law

Mirroring a Massachusetts law passed earlier this year, President Obama recently signed Rosa’s Law, mandating the removal of the terms “mental retardation” and “mentally retarded” from all federal education, health and labor laws and replacing them with the words “intellectual disability.”

The bill was proposed because many Americans feel after years of misuse the word ‘retarded’ now qualifies as  hurtful speech.

“This law is about families fighting for the respect and dignity of their loved ones. It was driven by a passion for social justice and compassion for the human condition,” said the bill’s sponsor Senator Barbara Mikulski (D- Md.), in a press release. “It’s a perfect example of citizen advocacy.”

Brian Skotko, MD, MPP, a specialist in Children’s Hospital Boston’s Down Syndrome Program had this to say about Rosa’s Law and the impact the R-word can have on people with intellectual disabilities and their families.

“At last, the R-word has now been banished from the Oval Office.  When President Obama signed the U.S. Congress’s law to retire the R-word from federal statutes, our nation took one more step to bury a word that has come to stigmatize an important segment of our society.  People with disabilities can and do make important contributions to our communities, and my earnest hope is that we can now all embrace another “r” word–respect.”

To read more from Dr. Skotko’s on the importance of sensitive language as it relates to people with intellectual disabilities, please click here.

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Can a pill cure intellectual disabilities?

one capsule in small spoonby Sharyn Lincoln, M.S., C.G.C. & Jonathan Picker, MD, PhD

The ability to improve an intellectually disabled person’s IQ sounds like science fiction, and not so long ago it was – but that is changing.

The Boston Globe recently reported on one of the most exciting things happening in medicine, and one which may profoundly change the way society approaches children and adults with special needs.  Specifically, they reported on the use of a drug that looks like it is going to help individuals with fragile X syndrome think better.

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This week on Thrive: Feb. 1-5

Here’s a quick look at what Thrive was up to last week.

Brian Skotko, MD, MPP, explores the term “Avatard.” A Children’s youth advisor calls for action to ban bullying. Children’s doctors recount time in Haiti to NPR’s All Things Condsidered and WGBH’s Greater Boston. Claire McCarthy, MD, warns parents about the choking game. Children’s doctors are closing in on the likely cause of SIDS. Brian Skotko, MD, MPP, discusses the “R” word the “R” word on ABC World News. The Mediatrician looks into whether TV watching could be related to speech delays.

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