Tuesday, March 19, 2013


Let me open with the most important message that I am ever going to give to you. A message I will shout from the rooftops as long as I'm here on this earth. A message that fuels my advocacy and activism and allows for me to leave good intentions and acts of kindness that are really moments of pity or charity in the dust, fallen by the wayside with other outdated and faulty notions. A message that I believe in with every fiber of myself, and that guides my parenting, my relationships, and my being.

Disability is natural.

Down syndrome is natural.

Trisomy 21, or Down syndrome, is a frequently occurring genetic variant, highly viable with life, and something that simply, naturally occurs. Down syndrome is not the other. In a parallel life, you could have Down syndrome. In this very life, you could have very well been born with Down syndrome.

And that wouldn't make you unnatural, challenged, broken, or less than human. You would still be you.

Down syndrome does not need to be fixed or 'normalized'. It needs to be allowed to exist as something that is an acceptable and natural part of some people, our equals in everything, regardless of their perceived capabilities. Meeting milestones, or being highly functional (whatever the hell that means) is not 'winning' at Down syndrome, or at life. Living life, and having equal opportunity for the same experiences as everyone else is what life is all about.

You know, being human. Having rights and responsibilities, and being able to decide what to do with those rights, and whether to honor those responsibilities. And, facing the consequences.

On the 21st it is World Down Syndrome Day. A special day for celebration and awareness. This year there's some weirdness about wearing loud socks to raise awareness. An icebreaker for discussion? In all honesty, I don't really think either of us needs an icebreaker for awareness. We're evolving.

We need to take action.

You might have gleaned from my last post that simple awareness is no longer doing it for me. I know better now. There is a need for acceptance. There is a need for action. A need to level the playing field. To make every single classroom inclusive in spirit and in space. To remove having Down syndrome as a negative in a college or a job applicant, as is being done in the case of race, gender, and sexual orientation. A need to embrace everyone's uniqueness and individuality without there being some who are 'more different' than others. A need to stop using language - and not just the word retard(ed), but suffers from, is inflicted with, a Down syndrome patient, a risk of Trisomy 21, them - that degrades, demeans, marginalizes and dehumanizes those with intellectual disabilities. A need to focus on how exactly Down syndrome and those with Down syndrome are portrayed and represented in the media. Unfair and biased portrayals, as well as fluff pieces that utilize those with I/DDs for inspirational feel-good in the mainstream need to be publicly denounced.

We need to actively advocate for acceptance and inclusion, even if it means alienating people who are uncomfortable with having their worldview challenged.

We need active acceptance and inclusion, not just passive awareness. We need active involvement by everyone, everywhere, not just slactivism by adding partial visibility with a click, or a smile, or a token birthday invitation. We need a community where admission is not only by a chromosome count, either way.

You don't have to love someone with 47 chromosomes to understand, you just have to be human.

There MUST be an organization that barks up and makes a terrifying stink every time someone in the media, in medicine, in legislation, in the public eye, anywhere in the world, gaffes. Be it the r-word or a homicide swept under the rug. There must be an organization that ensures that there are repercussions for marginalizing acts, for drawing on stereotypes, for exclusion, for dehumanization by language. There must be anger and outrage that leads to shifts in attitude and to organized action. Instead of intentions, we need to focus on consequences, on what is, not what was intended.

We need to stop accepting crumbs, in the fear that if we don't, we might not be 'liked'. 

Why, hello there REVOLUTION. You're needed now.

People with Down syndrome are not defective. Society is defective.

Yet. This is not about legislation, or about funding, or about research. This is about attitudes. This is about human rights.

And the question of who counts as human.

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