Tuesday, August 26, 2014

Making society more welcoming to differences

More than two decades after Chris Burke, playing Corky Thatcher, first won the hearts of TV audiences in the Life Goes On series, another American with Down syndrome will soon grace the silver screen. Albuquerque's KOAT-TV reports that filming will soon begin for Everybody Loves Tim, a "docu-series" centered on Tim Harris who, since 2010, has welcomed customers to his popular breakfast-and-lunch joint in the "Duke City," called Tim's Place.
The casting call is unique. Producers are looking for "people seeking to live a more confident and inspired life," and are interested in "learning how to live more like [Tim] does, with supreme confidence and the ability to live life to the fullest."
The energetic, inspiring young restaurateur, and self-styled "hugging machine," has Down syndrome.
The outlook for Tim and other Americans living with Down syndrome - as well as their families - has steadily been improving. Since their commonalities were first identified in the mid-19th century by Dr. John Langdon Down (1828-1896), we have come a long way in understanding and helping people with Down syndrome.

Gone is the erroneous belief that the condition was somehow a parent's fault. Also gone, or nearly so, are hurtful and inaccurate descriptive terms. The advent of antibiotics, starting in the 1950s, has extended the life span of those with Down syndrome to around 60 years by eliminating the respiratory infections that usually ended their lives in childhood.
Advances in treating congenital heart defects are also helping. In fact, babies with Down syndrome who have heart surgery do better than typical infants with the same condition.
The biggest breakthrough in our knowledge of this genetic condition happened in 1958, when the great French geneticist Dr. Jerome Lejeune (1926-1994) discovered chromosome abnormalities, the most commonly known one being trisomy 21. Building on his legacy, the Jerome Lejeune Foundation has carried on and funded productive research. Very recently, research supported by the Lejeune Foundation and others has made remarkable progress in better understanding Down syndrome. What is more, clinical trials now underway offer hope that therapeutic treatments might be on the horizon.
All this good news, and much more, you will find in "Improving Joyful Lives: Society's Response to Difference and Disability," an extensive report and position paper released this summer by the Charlotte Lozier Institute. The report's author, Mark Bradford, is president of the Lejeune Foundation, USA.
Among the developments that Bradford cites are clinical trials undertaken by pharmaceutical companies to treat intellectual disability by focusing on topics such as cognition, learning, memory, language ability, and psychomotor development. Scientists are learning more about the neurobiology of Down syndrome and are looking into avenues that offer the possibility of chromosome therapy in the future.
Bradford's report, however, contains some somber but sadly not unexpected news: Thanks to the availability of prenatal testing, parents of U.S. infants diagnosed as having Down syndrome are aborting them at a rate of 67 percent to 85 percent, depending on the study. This tragic situation need not be.
After all, research by Dr. Brian Skotko, co-director of the Down syndrome program at Massachusetts General Hospital, has shown that 99 percent of parents who let their babies with Down syndrome be born say they love them - and that between 97 percent and 99 percent of people who live with Down syndrome say they are happy with their lives and like who they are.
Bradford's report shows that we can do a better job of supporting parents who get a Down syndrome diagnosis. Knowledge, understanding, and compassion are essential to dealing with differences and disabilities.
We can assure that parents are able to give free and fully informed consent to the testing in the first place. We can provide them with accurate, unbiased information upon the diagnosis of a disability, either prenatally or upon birth, as required by the Prenatally and Postnatally Diagnosed Conditions Awareness Act, sponsored by the late Sen. Ted Kennedy (D., Mass.) and former Sen. Sam Brownback (R., Kan.), which has yet to be funded.
Pennsylvania recently became the seventh to pass this legislation at the state level. Known as "Chloe's Law," the statute requires that parents be provided with up-to-date information and contact information for supportive organizations. We can also put them in touch with other parents in order to help them understand Down syndrome and learn about the loving, positive experiences that people do have. We can also work for a sea change in attitudes so that medical personnel learn to see babies with Down syndrome as individuals, not to stereotype them or make ending their lives in the womb a default position.
We can all do more to make our society a welcoming place for people with Down syndrome, from before birth, into childhood, and on to adulthood, so they may lead happy and fulfilling lives - and so that they too, like Tim, may have the chance to welcome us. If given a chance, these unique people may bless us with their own special gifts of love and joy, as any parent of a child with Down syndrome knows so well.

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