Friday, March 21, 2014

A Fair Shot

Other than my monthly wrap ups and the blog hop, I've been taking a needed blogging hiatus.  Rest assured I will be back to this and my other online efforts at some point. But for now, I'm taking some needed me and family time.

Today however, is World Down Syndrome Day.  I could not let this pass by without notice.

Last year, I wrote about some of the issues that I had with awareness campaigns, those for Down syndrome in particular.  I talked about awareness vs acceptance; marginalization by the medical community; inspirational porn and pedestal ableism; derogatory slang such as the R word; and flat out homicide.  I still stand by each and every one of these; they are real issues faced by people with Down syndrome every day, along with their families, allies and loved ones.

Plenty of socks/wacky socks/odd socks may seem like a fun, silly thing to do, to create awareness, but what does it do really?

For the record, I hate socks, especially these horrible things.  *shudder*

Not a lot...   Outside of keeping your feet warm in what has been a god-awful winter.

Despite the presence of a lot of blue and yellow, including on Toronto's CN Tower and my current fingernail polish, not much will change about the lives with people living with Down syndrome today.  There will be pride, yes... there should always be that.  However, there will still be discrimination at the doctors office, by law enforcement, by teachers, counselors and therapists.  Much of it will be hidden under the guise of "meaning well" or paternalism, doing "what's best" for the person instead of considering individual needs, but it will still be there.  It may be based on old eugenics theories too, a sense of doing what's best for a skewed perception of "the greater good".  There is internalized ableism too within the community, and a lot of elitism even in the disability world towards those with intellectual disabilities.  There will still be a public perception of "lesser" and "sick" as our very language outlines how we really feel. 

As a society, we give a break to parents that murder/attempt to murder their children if they have a disability.  We wreathe these acts in compassion, that somehow the death of a child, of any person at the hands of another is okay if they have needs outside what is considered an able norm.  Instead of increasing community supports and education, we choose instead to buy into the tragedy rhetoric.   This year started out with another death of a person with Down syndrome, this time a 17 month old boy named Lucas Ruiz, who was poisoned not once, but twice by his parents in what they are calling a "mercy killing".  Both parents believed that their child who was born with an extra chromosome, a heart issue and required a feeding tube was "better off dead".   There are still many people who believe that he and people like my son should never have come into being at all, that Down syndrome is a burden to society.

After all the socks and banners and ribbons and awareness, and memoirs and conversations and "teaching moments", why are we still having these discussions?  Why are these things still happening?

What people with Down syndrome need is meaningful inclusion.  Is acceptance.  Equality.  PRIDE. A sense of community and of belonging.  Not socks.  Not pats on the head.  Not superpowers or heavenly qualities.  People with Down syndrome want a fair shot at having a happy life.

You know, the same stuff the rest of us want.  The same things I want for all three of my children, not just the "able" ones.

The same things we all keep writing about, over and over again.

Maybe this year we'll get lucky and someone will take the hint.

Happy World Down Syndrome Day.


  1. I love this. I really do. Thank you.

  2. This is bound to be an unpopular comment, but thank you muchly for writing about the socks. The socks as a symbol aren't doing it for me either - in fact, I worry that sadly there is a big chunk of society who would look the whole sock thing and think 'ah bless, they're all supporting those people who aren't even clever enough to match up their own socks.' Ouch.

    That has been in my head all day. That is incessantly harsh, and cruel and ugly, but that is where the sock thing has put me. That is the sad current reality for so many outside the DS community. For those kinds of heartless people who fling the 'r' word around like a frisbee. And that kind of thinking is something for which I do not in ANY way want to provide 'ammunition', so no mis-matched socks for us today. I entirely understand the point of the campaign but I simply do not trust others to do the same. I am not sure of the answer. I know it all just makes me really sad.

    What I do want to support is acceptance, and inclusion, and inspiring people to openly discuss a condition that isn't as scary as we are led to believe. My son has Down's syndrome but he also has a long and happy life ahead of him. I don't need mis-matched socks to express and enthuse about that.


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