Thursday, July 4, 2013

About Grief

And how deep the Rhetoric of Ableism runs.

In my life I love. I laugh. I get angry. I get bored. I whine. I rejoice. I joke. I drink too much coffee and wine. I yell at my husband and at the computer for daring to behave differently after the latest software upgrade (the 'puter, not the husband). I dance and sing and eat burgers with gusto.

Sometimes I cry when someone's a total ass towards me and sometimes I fight back. Most times I hang out with my family and friends and just bathe in the happiness and joy.

I enjoy my life. I'm happy and content. I'm where I want and wanted to be. I enjoy my life.

Yesterday I read this article on Huffington Post about grief. It's a personal account and a parent's take on something that gets tossed around in the Down syndrome community a lot, namely 'grieving the child you thought you were going to have, to be able to enjoy the child you did get'. To me personally this exercise has always been pointless at best and incredibly insulting at worst. So I wanted to comment thusly:

"I am also a mother to a child with special needs and while I support you and understand you as a fellow parent and as a human being with a specific experience I also feel to need to bring to your attention that your experience is by no means a universal one. In fact, I often consider an experience such as yours, which is by no means invalid in any way, brought on by compliance to a rhetoric created for the mainstream, *only* for the mainstream. A rhetoric that never questions what it means to be human, what it means to have value and worth or have a valuable or a worthy life. What it means to be happy. Why we're so driven to attain a level of accomplishment, of development for our children. What is normal and how is it defined and where does the concept derive from? I know there is a whole world out there that does not define success by milestones or worth by 'closeness to normalcy'. There is love and diversity and a movement that allows for difference that doesn't define, but enhances. 

I feel we cannot change things for our loved ones (or for ourselves) unless we let go of what has been arbitrarily defined and create anew. Lets change the world for our children, not our children for the world.

Much love to you and yours."

I always feel compelled to say something when it seems like a major news outlet is picking up 'a story' I and many other advocates refer to as misery peddling, when the struggle they pick up on is not the struggle for equal rights, inclusion and acceptance, but the struggle of a caregiver to get over their shock and horror at a disability. This article in Huffington Post is by no means unique, it is the latest in a long, long line of articles discussing depression, jealousy, and even thoughts of suicide when facing one's child having a disability.

I guess misery sells. I guess overcoming something insurmountable (oh please) sells. I guess someone finally being able to love a kid who (gasp) has an intellectual disability is the stuff for inspiration and appreciation of one's own life. Who knows?

But the person who wrote the story responded:

"While I appreciate your perspective, I believe that the world you speak of and hope for is a utopia of sorts and unfortunately unrealistic in present day. Without milestones as a yardstick, parents would not know whether or not their children were falling behind in things like walking, talking, etc. Those milestones signal proper development and the lack thereof signals a need for assistance such as therapy. This is not to make these children "normal" for the sake of society, it is to allow them the opportunity to grow to reach their potential - whatever that may be. For example, if a child is not identified with a neurological or physical disability and then treated quickly enough, there is a possibility that they may not be able to walk. They would certainly have value and be considered worthy of life either way, but having the ability to walk (rather than be confined to a wheelchair or walker) would arguably bring them more opportunities and and general ease throughout their lives. I'm not sure it is fair to our children to ignore societal norms - regardless of how "arbitrary" we may think they are. Until we can change the perspective of everyone in the world, the best we can do is create realistic and hopeful expectations and a loving and supportive environment for our children and the people around them. J."

I nearly passed out.

Every once in a while there's something that just leaves me completely hopeless. Leaves me wondering why I keep doing what I'm doing when one of 'my' people - fellow parents, family members of people with disabilities, and self-advocates - with me at the barricades fighting for that better, more equal and accepting world, turns out to be fighting a completely different battle.

When they are not fighting for acceptance, but to accept.

It hurts when concepts such as 'proper development', 'treating a neurological or physical disability', being 'confined to a wheelchair' and 'societal norms' are touted as facts and something that should go unchallenged. That the only body and mind worth having and the only body and mind that will give 'opportunities' in life are the kind of body and mind that have no impairments.

The rhetoric of ableism goes unquestioned, and has become the baseline. It hurts.

My child is not a project. She's my child. I don't want to try to 'fix' her to measure up to some arbitrary yardstick or adhere to some societal norm that's really baggage in disguise. Instead of saying "How high?" I want to ask "why?"

The world is my project, even if I can't change it in my lifetime, at least I'm trying to make a difference, a change for the better for everyone in the future.


  1. Bang on, sister.
    I'm right there at the barricades *with* you.

  2. speechless and nearly passed out here too..oh my. so much work to be done. one word, one person, one relationship at a time. Keep engaging ... that's what I tell my daughter .... be OUT there girl. That's how we transformed our school, our community . . . and how they transformed us. WE were all out there in everyone's face. Sometimes laughing, sometimes fighting. thanks...

  3. Just a couple of thoughts about this. The first is that grief is complicated, and though we know a lot about its phases, it is a very individualized experience. Not everyone (obviously because you and I didn't) grieves a child that "might have been" but as you pointed out, we are told the that we should. For me that made no sense at all... Kimani was never anyone but Kimani so why grieve a fantasy I never entertained to begin with? The author of that article mentions all kinds of things she grieved, and might grieve, and it sounds more like she struggles with chronic sorrow. There is a great book out there on the topic, Chronic Sorrow: A Living Loss by Susan Roos.

    I think your comment may have been too philosophical for the venue. This is a convo over drinks, kwim? Which means I am going to do a crap job barely scratching the surface in this comment, but I'll still try. You raised a great point that the concept of "normal" is what is being grieved and is simply a construct of society's imagination. But her response somehow got tangled in with therapy and whatnot, which is not exactly connected to grief in my mind.

    Her response could be interpreted as still not accepting her child because she is trying to move that child toward the "norm", but that is perhaps not the only way to interpret people wanting their children to be more "able". What if we accept what is, work for acceptance as is, but then refuse to accept that nothing could be better for our children? Why is it ok that I wanted my daughter's aorta to be resectioned and her heart patched up, but it is perhaps a sign of my rejection of her as a person if I want the missing myelin sheathing in her brain to be replaced?

    Anyway, I agree with the point you made about the dangers of the ableism rhetoric but lately I have been pondering why it is not ok for me to fight for my girls to have better health in every way. I am beginning to question the rhetoric of "status quo" delineating true love and acceptance.

    Thanks for letting me think out loud over here :-)

  4. Thank you - Jeez.
    I remember someone sitting me down, so to speak, and explaining that it's normal that I grieve over the child I didn't have. I remember thinking, "What are you talking about?"
    I was scared as hell because my son had a heart defect and because everyone around me was freaking out and doctors were being, well, weird.
    But I loved my son. Period. Who he is, who he was, and who he will be.


The Viking came home from a business trip packing a pink castle, a whole heap of princess and prince dollies and a carriage pulled by a unicorn. Life's good until someone swallows a crown or a glass slipper. I won't ever answer your comment, but I'll sure appreciate it while I'm sifting through shit looking for that crown. Yah.