OK, just the first part of this post is about socks.
In that, I am not going to wear Lots of Socks! On World Down Syndrome Day. Either is our kid. (Mostly, because he doesn’t know he has Down syndrome. He also doesn’t know he is really super short.)
For those of you not in the know – “21 March 2013 marks the 8th anniversary of World Down Syndrome Day (WDSD), a global awareness day which has been officially observed by the United Nations since 2012.” (I am thinking the lag with the United Nations joining is due to countries needing seven years to figure out where they were keeping their citizens with Ds.)
“Down Syndrome International (DSI) invites everyone across the world to wear LOTS OF SOCKS …to raise awareness on …WDSD. We want to get people talking about WDSD on 21 March, and we can do this if we all wear socks…BUT NOT JUST ANY SOCKS…brightly coloured socks, mismatched socks, long socks, printed socks, 1 sock…maybe even 3 socks (or EXTRA socks) for 3 chromosomes. Or if you don’t normally wear socks then wear them. Just so long as they are socks which are on display and people will ask you about.” (http://www.worlddownsyndromeday.org/)
“We can do this if we all wear socks”. What exactly are we do-ing? What’s the end game here? First, I am beyond wanting “to raise awareness”. Awareness might be one step below tolerance. I am for full-on acceptance and inclusion. Second, socks? An article of clothing that is mostly covered up? Is this the best we have to offer people with Ds in the world? (If we are going to go this inane route what about a brightly colored hat?)
So, let’s say someone notices our socks then what? Where is the script with talking points? What are we telling people? How happy they all are? Don’t mind them? There are not very many – we made sure of that?
I smell a rat. Did the sock manufacturers of the world scheme this up? Just like the ‘Eat Meat’ and ‘Got Milk’ campaigns? (Yea, I’m the suspicious type of mother.)
There is a paradigm shift happening in the Down syndrome community towards acceptance and inclusion and away from awareness and tolerance but it is not being reflected in our international and national Down syndrome organizations. And, it is certainly not evident in DSI’s WDSD actions.
We have so marginalized this group of individuals that an activist movement that acknowledges Ds is a human rights issue has been difficult to achieve and sustain. We also have a situation unlike other activists’ movements – except the LGBT movement – where the individual oppressed is raised by a parent(s) who is not.
It occurs to me there’s at least one other similarity: That both identities need “fixing,” which assumes there’s something wrong with the individual.*
In January of this year Jeanne Manford, a mother and activist died. In 1972, Ms. Manford wrote a scathing letter to the New York Post criticizing the police for not intervening and protecting her son, Morty, who was gay and demonstrating in a protest from being beaten. It was unheard – epic even – then for a parent of a child that was gay to stand up and say my son is a human being and deserves your respect and protection. She went on to found a national parents group that stood in support of equal rights for their gay children.
We could use a Jeanne Manford right about now. Loving our children is not enough especially when we as parents are deciding what is in the best interest of our children. If that interest is mired in fear of inclusion than those children ride the proverbial short bus. If those interests are for full inclusion the options expand.
At about the same time Morty’s mom was marching for the rights of gays the conventional wisdom of doctors to parents was to have their ‘imbecile children’ institutionalized. Many parents did. Some did not. They went against the fray and kept their children at home like all children.
With the end of de-institutionalization some parents favored the dictated road of ‘separate but un-equal’education and accepted developmental classrooms for their children. Other parents fought and still fight for inclusive education.
Our children – those with Down syndrome and those without Down syndrome – will be what we tell them they are. If we say you are equal and worthy and important and enough they will be.
As parents we must decide this is a human rights issue. We must decide to fight. And it will be epic.
* This addition was offered by a reader and husband – mine.