A couple of stories caught my attention this past week, that made me stop and think about the different reactions around the world that a diagnosis of Down syndrome can generate.

An article in last week’s Moscow Times (25.08.09) reveals that a diagnosis of Down syndrome is “nearly a social curse” and “about 85 percent of families reject children with this diagnosis on the advice of medical staff.” Due to these shockingly low levels of general awareness “thousands of families raising disabled children have to fight for their future in an ignorant and unfriendly environment”.  What a hard time these families and individuals must go through.

So who is helping to overcome this?

Downside Up, a non-profit organisation based in Moscow, which provides support and advice for families raising children with Down syndrome, “launched an awareness-raising programme aimed at fighting pre-existing myths and stereotypes about the syndrome, and about the abilities and capabilities of such people", the Moscow Times reports. Downside Up’s goal is to change public attitude towards people with Down syndrome and to provide a new, positive perspective for the media to present, far removed from the previous, “tragic connotations”. In a country where even doctors “truly believe that such children (with Down syndrome) are incapable of learning and need to be kept under specialised care throughout their lives”, Downside Up has an uphill struggle on their hands.

However, the charity has been trying to capture the attention of Moscow’s business and art elite, and, in turn, the attention of the general public, to promote a picture of an ordinary family raising an ordinary child with Down syndrome whom is as ordinarily unique as the next child, with their own thoughts, feelings and achievements in sport or music or art.

To initiate this Downside Up has organised a number of  programmes, including a poster exhibition entitled ‘Just people with Down syndrome’, a calendar of well known Russian sports people and celebrities alongside children with Down syndrome called ‘All you need is love’ and, in conjunction with the Moscow Times the ‘Create yourself’ art project, which shows the artistic abilities of children with Ds and reminds people that just like all children they too “have friends, do homework, dance, draw and adore ice-cream.”
( www.en.downsideup.org)

Downside Up are delighted by the positive results. “The amount of stories and publications has gone up and journalists are becoming more accurate in their coverage. The interaction with the mass media is becoming dependable and constructive, which no doubt positively influences the public’s attitude to disabled people”, says Elena Lyubovina, their PR Manager.

The need to overturn this outdated Russian viewpoint comes in stark contrast to the advanced work of the late Senator Edward Kennedy. His recent death has prompted even more tributes for his pro-disability rights stance, especially his co-sponsored ‘Prenatally and Postnatally Diagnosed Conditions Awareness Act’. This piece of groundbreaking legislation, passed in October 2008, states that doctors when giving a diagnosis of Down syndrome -or any other prenatally diagnosed disability- present the news and information on the condition in an unbiased, helpful and easy to understand manner. It had been noted that doctors were previously giving information on the syndrome from a negative standpoint.

Both Kennedy and his partner on the bill, Republican Senator Sam Brownback, felt that a more balanced viewpoint of information should be given to expectant and new parents. In July 2007, Brownback was quoted as saying, “when a mother receives the news that her unborn child may be born with a disability, she should be supplied with current and reliable information about the many options available for caring for children with disabilities.”

The Act which colloquially became known as ‘The Brownback Bill’ ensures that care and services such as a resource telephone hotline and Internet website; a clearing house of scientific information; a clinical course explaining life expectancy, developmental potential, and quality of life relating to Down syndrome or other prenatally diagnosed conditions and the establishment of national and local peer-support programmes are offered not only during a woman’s pregnancy but throughout the year following the child’s birth as well. In addition the Act proposes the establishment of a register of families that are willing to adopt newborns with disabilities.

The fact that these two men, both from different political parties, and opposing opinions in regard to abortion - one pro-life, the other pro-choice - could come together to formulate this legislation, that they always felt must go further than to just dissuade abortion, gives us an insight not just to their beliefs but into the progression of American’s perception of disabled people.

While Russia may still have a long way to go before they catch up with America’s positive perception it is nice to see that a brighter future is being built for their disabled population, which totals about 13 million people, approximately 10 percent of the Russian population. Let’s hope it won’t be too much longer until a very positive perception of disabilities, including Down syndrome exists worldwide.

Reference List:

http://www.themoscowtimes.com/article/381222/index.html

http://www.lifesitenews.com/ldn/2007/jul/07072410.html

http://www.prospect.org/cs/author?id=1436