I want to paint a picture of some neat recent events: A stunningly dressed couple smile on their wedding day with the Christchurch cardboard cathedral as a backdrop; a drummer crashes the cymbals at the end of a song that rocked the whole dance floor; a young woman celebrates achieving several NCEA level 2 subjects, including maths; a young woman does a flip and is caught by fellow cheerleaders.
These people have an extra chromosome, Trisomy 21 and means they have Down Syndrome. It is clear to me that in a family full of love and a society full of acceptance and patience that lives that include Down Syndrome can be rather good.
This Saturday (21 March) is World Down Syndrome Day, a global awareness day that has been observed by the United Nations since 2012. It is a day for people across the world to unite to advocate for the human rights, inclusion and well being of people with Down Syndrome. Celebratory “T4T” tea parties are held in the 3rd month on the 21st day for the people with 3 chromosomes on the 21st pair.
Coincidentally, this date is another human rights date – Race Relations Day – with its origins going back to the Sharpeville, South Africa massacre and recalling the extremes of racial genocide of the WW2 holocaust. These human rights atrocities committed by the Nazis galvanised the world in horror and led to the first international instrument on human rights, the Universal Declaration of Human Rights.
While most people today are aware of the holocaust of 6 million Jews, fewer are aware that prior to this, an estimated half a million disabled people were medically experimented on and slaughtered. Evidently, the first targets of this abhorrent experiment, the T4 Euthanasia Programme, were people with Down Syndrome.
The United Nations Convention on the Rights of People with a Disability now gives disabled people the same rights as others, including to be accepted as part of human diversity and humanity. But here we still have disabled people not included in mainstream schools as they should be, and having difficulty overcoming barriers to access what the rest of us take for granted.
Personally, I wonder if we were better at supporting and accepting disabled people into our families and communities that we would indeed have more Down Syndrome people amongst us. Research says the vast majority of families love and are proud of a family member with Down Syndrome. Clearly, the journey will be challenging at times, but rewarding and unconditionally loving as well.
I suggest that one reason our post screening pregnancy termination rates are as high as they are is in some part because our society is not as welcoming and enabling of disabled people as it could be or indeed should be. Perhaps more exposure to positive media images on the internet of young people with Down Syndrome and encouraging future parents to not be afraid will help to build the more inclusive diverse world that many disabled people and non-disabled people hope for and dream of.