Self Advocacy at Work

Advocate, Disability, Down Syndrome, People with Disabilities 20 Comments »
Lauren Potter, who plays cheerleader Becky Jackson on Fox's "Glee," has been appointed to serve on the President's Committee for People with Intellectual Disabilities. (Michael Yarish/FOX)

Lauren Potter, who plays cheerleader Becky Jackson on Fox's "Glee," has been appointed to serve on the President's Committee for People with Intellectual Disabilities. (Michael Yarish/FOX)

Adults with Down syndrome are speaking up for their rights and participating in events related to their interests and needs. As reported on Disability Scoop, a recent opportunity has been presented by President Obama for a young actress, Lauren Potter, to serve on the President’s Committee for People with Intellectual Disabilities.
Lauren, who has Down syndrome, portrays a cheerleader on the award winning TV show “Glee.” The committee Lauren will join consists of 21 citizens and 13 federal representatives who are charged with advising the president and the secretary of health and human services on issues pertaining to Americans with intellectual disabilities. Her recognition on “Glee” led Lauren to become involved nationally as a self-advocate, speaking out against use of the word “retard” and the bullying of people with disabilities.
Lauren is pictured with Jane Lynch, who portrays the cynical physical education teacher on “Glee.” Ms. Lynch is the sister of a young woman with Down syndrome who died recently. This event was poignantly portrayed on an episode of the program. (A discussion of this episode appears on my blog entitled “Life Expectancy”.)

Television has the potential and opportunity to promote awareness of and respect for persons with disabilities. We celebrate the enlightenment that “Glee” has advanced.

Life Expectancy

Adults with Down Syndrome, Aging, Down Syndrome, Family Challenges, Mother of an Adult with a Disability 10 Comments »

I like the TV show Glee, but I missed the season finale. Tom thought I should see it, so I found it and watched it. And watched it again.

We knew that Sue, the irascible coach (Jane Lynch), had a sister who had Down syndrome. In this episode, the sister had died and Sue was angry and bereft. She explained her feelings:

“Everyone told me that people with Down syndrome don’t live past 30. But my sister lived to 35, then to 40, then 50. I thought that after this, we could grow old together. She lived a life with no enemies and no regrets; why is it her time and not mine? How come I’m the one still standing here?”

It has been a common assumption that the life expectancy for those with Down syndrome is short. But as the life expectancy for the general population has increased, so has that of persons with Down syndrome. One reference stated that the average life expectancy of individuals with Down syndrome has increased from 9 years in 1929 to 12-15 years in 1947 and 18 years in 1961. The current projection is that 44% will survive to the age of 60 years and 13% to 68 years.

A graph showing increasing longevity for people with Down Syndrome

Increasing Longevity: People with Down Syndrome

The coach said, “I don’t know how to deal with her death. For now I’m just going to miss her.”

As for me, I don’t know how to deal with these projections. Billy is in his 50s and I am in my 80s. It’s a toss up to see who will go first. So like the coach, I don’t know how to deal with it. For now I’m just going to enjoy him.

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