Home Project Donors Donate Thanks Contact More
THE PROJECT
I am a filmmaker and mother to an amazing and wonderful child with Down syndrome and I am making a documentary about Down syndrome.
When I was three months pregnant I found out I was having a child with Down syndrome and like most people when receivng such a pre-natal diagnosis, was afraid. I didn’t know what to expect. I had the stereotypical idea of what Down syndrome is and imagined a person sitting in a corner rocking back and forth, drooling and staring into nothingness. That’s what it used to be like when parents were advised to send away their babies with Down syndrome to institutions. They were told to tell their families the baby didn’t make it. As late as 1983 people with Down syndrome only lived to an average age of 25. Due to advocacy efforts, institutionalization came to a stop, early intervention came into practice, and now many people with Down syndrome are living into their 60’s and beyond.
I’m here to tell you my experience has been amazing. I had a beautiful son full of love, laughter, the greatest sense of humor and the desire to learn and succeed. I learned that many individuals with Ds have careers, jobs, are going to college, some are getting married, and living independently. Many are athletes, actors, writers, artists, and models for major brands practicing inclusion. There’s one adult with Ds who just earned her doctorate, another who just became mayor in a city in Spain. I learned the possibilities are endless…
But then I began to hear the down side of things: Despite great strides in the treatment of individuals with Down syndrome in our society, there are still major problems.
Fear, ignorance, intolerance, and lack of awareness exist universally and people with Down syndrome are still so misunderstood:
• Individuals with Down syndrome are discriminated against in public and social systems.
• They are hurt by the casual misuse of the "r" word.
• There is segregation, inequality, and a lack of individual attention in schools. Many parents feel decision makers for their children's education fail to properly evaluate their children's potential and their children are given less opportunities for intellectual, personal, and academic growth than other children who do not have Ds.
• Although Down sydrome is the most common genetic variance in our society, it is the least funded in terms of medical research
• Tragically, up to 95% of pregnancies diagnosed with Ds are terminated. There are new non-invasive pre-natal blood tests taken early in pregnancy that some worry will increase the termination rate.
• In new developments scientists have found a way to silence the extra chromosome that causes Down syndrome in laboratory stem cells, offering the first evidence that it may be possible to correct the genes responsible for the disorder. Some are comparing this new genetically modifying technology to the book and movie based on the book FLOWERS FOR ALGERNON.
With his documentary I hope to educate greater society on what magical and wonderful human beings this culture of people living among us are. Most parents who have children with Down syndrome say despite any of their challenges, they would not change the fact that they have a child with Down syndrome. In fact, they consider themselves blessed and their child with Down syndrome to be a wonderful gift. All families have challenges, some to a greater degree than others; the same goes for the families living with Down syndrome.
I believe people with Down syndrome are here to teach us...
There’s an amazing feeling of joy that is felt just by being around individuals with Down syndrome and despite their physical and developmental challenges in life, most are positive, full of wonder, curious, and humorous, with their own hopes and dreams. I personally have never met a group of people with such an easy sense of humor. I have definitely witnessed the gamut of emotions we all experience because we are more alike than different but the one difference I have seen is the way in which most people with Ds treat others: without judgment but with unconditional love, compassion, and understanding.
In the words of UN Secretary General Ban Ki-moon:
"Persons with Down syndrome often face stigma and segregation, physical and psychological abuse, and lack of equal opportunities. A vicious circle of exclusion can begin early in life as many children with Down syndrome are denied access to mainstream education or any education at all...Given the appropriate support and opportunity, all individuals living with Down syndrome can achieve their potential, realize their human rights on an equal basis with others and make an important contribution to society. We must, therefore, intensify our efforts to create conditions of empowerment that allow meaningful participation of persons with Down syndrome. Working together, we can help build an equitable, just and inclusive world that celebrates diversity, is free of discrimination and provides equal opportunities for all." - World Down Syndrome Day, March 21, 2013
NOW IS THE TIME...
Advocacy, Education, Awareness is key.
This documentary is not only for those with Down syndrome, but for all human beings. Those among us of difference teach us how to open our hearts and love and accept others, and in the process we are given the unexpected gift of love and acceptance toward ourselves.
We'll be highlighting the urgent issues facing the community of individuals with Down syndrome today, interviewing individuals with Down syndrome and their families, organizations for Down syndrome, groups that cater to individuals with Down syndrome, and medical experts. We'll be exploring the latest in research developments, and the current circumstances of those living with Down syndrome and their families.
WE ARE PRACTICING INCLUSION ON OUR PROJECT WITH THE MEMBERS OF OUR "EXCEPTIONAL CREW"! Click here to meet some of them!
To learn more about the inspiration for this project and the hopes for its reach, click here.
.