Saturday, April 20, 2013

What If

If you are a parent you probably know how profoundly this thing we call love for our children also spells constant worry, guilt, fear, feelings of inadequacy, and holds close to its very core the terrifying potential for bottomless grief.

While parenting might mean eskimo kisses and early morning warm cuddles, drawings on the fridge, tiny participation awards on the mantle, soft sobs that only your arms can make disappear, intense pride and joy, laughter that plays a never-before-played chord, and boogers that kind of look like a dog (and that don't really gross you out), there are also desperate nightmares about college funds, meaningful time, birthday invitations and popularity, happiness, correct nutrition, homework, following dreams and what those dreams might turn out to be, scraped knees and elbows that could have been so much worse, turning out 'well', and much more, that often, especially late at night, can seem almost overwhelming.

But your laundry list of concerns that keep you up at night probably does not include the worry that your child will not be seen as fully human by their peers and by the society they are growing up in.

Unless your child is also part of a population that is marginalized and that there are widespread, so deeply ingrained and accepted prejudices about, that more often than not they're regarded as opinions, sometimes even as the truth. As evidenced by the comments to this post, which the person who runs this blog calls "opinions" and "valid discussion".

My child is often marginalized and dehumanized.

How does a person exist in a society as fully human, and as an equal when they are constantly told by everyone, even their own community, that they are part of a marginalized, yet homogeneous group, a group of which blanket statements and assumptions can be made and spread as expertise?

Would that situation frighten you?

It frightens me.

The world at large seeing my child as somehow too different, defective, or less than keeps me up at night. It takes me away from my family in my need for tangible change while I read yet another article on Robert Ethan Saylor and plot a better tomorrow for everyone.

But that fear of her being taken away from me is never far either. After all, we've been close to that edge once already. That fear becomes even more pronounced, at times overriding the fear of my child not being seen as fully human, especially when something like what happened to Ethan happens.

A whole community of parents, loved ones, and people with Down syndrome is shaken. Shaken to the point where many feel like something needs to be done, this mother included.

So I understand the need to grab hold of anything that somehow seems like a solution. A powerful 'if only'. Something that just might tell a terrified parent that what happened to Ethan was an isolated incident and the result of something that is amiss, but that can be easily rectified.

'Down syndrome specific training' is born.

I applaud the community for attempting, for once, to come together to address this situation. I admire anyone's fierce passion for their children, I have much in store for mine. I understand the need to make everything better, to have a goal, and to make something positive came out of a horrifying sequence of events that never should have unfolded to begin with and that continue to haunt us because in lieu of an independent investigation there has only been an internal investigation. The need to make sure Ethan's death is not in vain resonates with me. I could never disagree with a parent's love for their child and their need for safety and security for that child.

But I have to look at the bigger picture. I have to look at the repercussions of the public discourse on Down syndrome specifically and intellectual and developmental disabilities more broadly. I have to look at this training, something I normally see as a positive, as education, within the scope of the constraining and limiting 'Down syndrome specific' epithet. I have to plot in how exclusion and separation from the general population by recommendations, protocol, or legislation will affect what I wish for my daughter and all people with Down syndrome - inclusion, acceptance and equality. I need to understand what happens to prejudices and stigma, while education and training on such, in reality truly specific subjects, as 'delays in processing' or 'heart conditions' are brought under the Down syndrome condition umbrella. I need to assess how detrimental such notion as having a "Down syndrome specific interaction" or addressing "specific health and behavioral concerns associated with people with Down syndrome" will be to perceptions of others regarding the individuality of a person with Down syndrome.

I need to be true to my heart and the one who calls me mom.

Exclusion by way of creating a standard that is separate for those with Down syndrome, if that were even possible for such a diverse population, is not the kind of legacy I wish to create for my daughter, or anyone with Down syndrome. I wish to create a legacy that challenges bias, stigma, and prejudice, and that celebrates diversity while understanding that Down syndrome in itself is not diversity but that diversity is born from individuality.

The only Down syndrome specific training that I can support is training that completely challenges the existence of anything 'Down syndrome specific' and focuses on people with Down syndrome as people, as individuals, as equal members of society with equal rights. That training I will champion.


  1. "Down syndrome in itself is not diversity but that diversity is born from individuality."
    Perfectly articulated.

  2. And sadly this kind of thing does lead to people question inclusion and independence for our kids:/

    and you and I need to chat sometime...I lived in Mexico City for awhile...

  3. The issues you raise go way beyond Down syndrome - they affect those with intellectual disabilities per se and in fact, are common to other marginalised groups in society.

    For 21 years I have been the change I want to see and it does work. My daughter plays an active, valued, participating part in her community, she has a wonderful quality of life and lives in her own home with support.

    That's not to say she has never been excluded or my heart hasn't broken at her being rejected because of her diagnosis - but we deal with those instances as they arise and attempt to salvage the positive from any given situation and in doing so, educate society at large.

  4. Not only did the entire Ethan Saylor event terrify me, but those comments... The fact that there are people in this world that do not see my son as human scares me more than anything else in this world. Thank you for articulating that our children must be treated with the respect and dignity offered to any other human to address the true problem. What is truly sad is that, to many, this is a shocking concept.

  5. This. I cannot share this, read this, wave this in front of people enough.

    We cannot create a world for our children to be accepted unconditionally if we make them the "other".

    Very well done.


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