Laura Lee, a vibrant young woman whose life was a series of firsts, died in her sleep last month at 33. "The death has left not only her family mourning, but thousands of people across the country, some who knew Lee and others who simply admired her as a trailblazer. On Saturday, the family will hold a funeral service for Lee in Fairfax County, but already the tributes have begun." She inspired those with Down syndrome as unstoppable — until she wasn’t. (SLWaPo)
How do you see me? (SLYT) Let's change the way we look at people with Down syndrome. AnnaRose is a nineteen year old from NJ. She's a full time college student who works part-time at a physical therapy center and enjoys basketball and swimming through the Special Olympics NJ. AnnaRose, as many people with Down syndrome, only wants to realize her potential and live a meaningful, beautiful life.
Sara Hendren talks at the Eyeo Festival about how she, as an artist, came to work at an engineering college. Hendren teaches at Olin College in Needham, MA and runs the site Abler, a site about "art, adaptive technologies and prosthetics, the future of human bodies in the built environment, and related ideas." Hendren's talk name-checks the artist Claire Pentecost, who has elaborated idea of the artist as "public amateur": the learner who is motivated by love or by personal attachment, and in this case, who consents to learn in public so that the very conditions of knowledge production can be interrogated. [via Text Patterns]
Karen Gaffney (TEDxPortland) speaks on history and present state of the value of people with Down syndrome. Gaffney (previously 1, 2), is the first living person with Down syndrome to receive an honory PhD and the president of an eponymous foundation dedicated to inclusion and advocacy. [more inside]
What It’s Like to Have Down Syndrome—and Care for a Sister With Disabilities While the initial focus was to portray Alyssa as just another member of her family, the project changed slightly when Carly began to lose neurological ability. Although Carly’s condition is still undiagnosed, Lois needed to continue to work in order to keep everyone under the same roof. As a result, Alyssa became one of Carly’s primary caregivers. [more inside]
I am in my first month of nursing school. It is the early 70s and this is a three-year program, hospital-based, all practical training. It is my first day in my first ward...A remembrance, by English professor and disability studies scholar, Janet Lyon.
Pennsylvania Governor Tom Corbett is expected to sign Chloe's Law. Chloe's Law, or the Down Syndrome Prenatal Education Act, requires medical practitioners to provide up-to-date and accurate information about Down syndrome with the accompanying diagnosis. Similar laws were passed in Massachusetts and Kentucky. Why is this necessary? Ask a parent or two and you find out how most doctors aren't up to the task. Fortunately, there are parents who will help them out (if they would listen).
Italian advocacy group Coor Down helped a pregnant woman understand what to expect with her soon-to-be born Down Syndrome child by gathering 15 people with Down Syndrome from various countries to answer her question.
23-year-old Garrett Holeve is an aspiring MMA fighter from Cooper City, Florida, just north of Miami. He trains six days a week, and has fought in amateur exhibition matches. He also has Down syndrome. This is his story [more inside]
31 for 21 in honor of National Down Syndrome Awareness Month, bloggers will be writing a blog article a day concerning the issues of Down syndrome. In addition, there is a blog hop of "best of" weekly posts. [more inside]
My Great Story (flash heavy) - The National Down Syndrome Society is building a collection of stories celebrating the lives of the 400,000 people with Down syndrome in the United States. Know someone with Down syndrome? You can contribute too.
Nella Cordelia: A Birth Story (warning: sound)
More Alike than Different the National Down Syndrome Congress has been running a campaign for Down syndrome awareness. As part of the campaign, they invited families to create their own own posters. Some are simple. Some are heartwarming. Some are fun. You too can vote for your favorite.
I Am Capable of More Than I Think I Am - Gregg Rogers discusses his introduction to being a parent of a child with Down syndrome for a segment of NPR's This I Believe. [more inside]
After a six hour swim, Karen Gaffney finished crossing Lake Tahoe. She's also done the English Channel as part of a relay. Karen also has Down syndrome and is a motivational speaker. [more inside]
'A child's spirit is like a child, you can never catch it by running after it; you must stand still, and, for love, it will soon itself come back.'
Arthur Miller's Missing Act :: For all the public drama of Arthur Miller's career ... one character was absent: the Down-syndrome child he deleted from his life
Down syndrome and Alzheimer's. People with Down syndrome are much more likely to develop Alzheimer's, and at a much earlier age: three-quarters of them will get it by the age of 65, compared with one-tenth of the general population. This Globe and Mail article looks at a relatively new phenomenon due, in no small part, to longer life expentancies among those with Down syndrome.
The National Potrait Gallery held a competition for new entries into the gallery. The winner is a fabulous painting by David Lenz. There is a great deal of focus in the exhibit of imagery that is truthful, but not necessarily flattering. The winner is both truthful and flattering. Lenz's subject is is his son, who has Down syndrome. The title, "Sam and the Perfect World" is quite poignant. There is a long NPR program covering the entire topic of portaiture in general and this portrait specifically.