Monday, August 5, 2013


"The road to hell is paved with good intentions."

I was reading something the other day that stated it takes, on average, 17 years for a new medical procedure or concept to be put into universal practice.  That's a long time in human years, I thought. 

Since I come from a medical background, it should be no surprise to anyone that I think in mechanical, medical terms.  A is not working well, so B must occur to return things back to normal.  Over the years medicine has become a little more open to the idea that normal is, well, not always average, so we've altered that mindset towards achieving one's baseline.  Everyone has a baseline that is unique to him or her.  That particular idea took some time to kick in as I remember running across it in Nursing school.  It's in practice today, 17 years after I graduated.

You can imagine then, once I realized that I was navigating the waters of I-have-a-son-with-Down-syndrome, how I felt when I learned that most of the society's current assumptions about DS are medically based...


...and totally wrong.


So very, very wrong that it hurts both my heart and my brain to think about it.  Most of the "common knowledge" about DS is not 17 years old, or even 30... it's more like 50+.  That's an awful lot longer in human years.  Despite all the ads and cute pictures of smiling children and promos and things that are done to "spread awareness", people still believe that having a child with Down syndrome will ruin their life.  Society-at-large still believes that DS is a disease that people suffer and that people with it are sick and unhealthy in general.  Mild to severe are still seen as appropriate ways to define one's functioning.  We still cling to the notion of an "Intelligence Quotient", where a quantitative value is assigned to a qualitative concept.  Despite this number not being able to tell you if a person is able to attend to the activities of daily living, people still use this.  It helps when segregating the other.  It sure did at Ellis Island, when it debuted...

But WHY is all this information so out of date?  Why is society more apt to adapt to the idea that placing a tree directly across from your front door is bad feng shui, but that treating all people as equals, as fellow humans is about as foreign as algebra is to a pelican?  While writing my A Brief History... posts, all I could think about was the persistent cycling;  there have been numerous times in history where people with DS stopped being the other and for one brief second, almost became just another flavour of humanity.  Then, as predictable as ever, the dreams of a post-scarcity economy evaporate due to a down swing or a war and Sha-ZAM!  People revert back to the middle ages.  It's once more "root hog, or die" and those that we briefly flirted with are once again the outsider.  We're doing it again, in case you haven't noticed. 

"WHY?", is always the question I ask myself.  Why must we do this dance every couple of generations?  Why must we have only a little forward movement, a little bit of enlightenment and then backslide?

Well, the answer is simple in it's complexity.  We, at least in the Western world, ultimately fear and despise difference. 

We are chock-a-block with privilege.  There are many forms, many shapes at play here in our culture.  There is white privilege and skinny privilege, male privilege, big breasts privilege and the list goes on.  People can readily point to one or two of these things that have impacted them directly.  One of the least understood is the privilege of the able

And, it's a biggie.

It's so big, the roots go so deep that you don't even know that they are there.  But they are, lurking under every conversation, every decision.  Like some kind of giant underground fungus.  Ableism isn't just a specific deed here and there, it's one of the foundations that our society is based on.  <*shakes fist at Aristotle*>

It wasn't until my friend Extranjera pointed me towards The Rhetoric of Ableism by Cherney that I finally said "Ah-ha!". The answer is not so much a "why" but a "how".  How does this keep happening?

Our language, the medium through which we navigate through this world, is inherently the problem.  Yes, we can all point to the phrase "I see" as being ableist in terms of those who are blind, true, but it's bigger than that.  It's the larger assumptions over there in the shadows that are really the source of all of this.  They are statements like:

Able is healthy
Able is normal
Normal is natural
Able is good
Body is able
Able is educated
Able is well off
Able is well-born
Able is better off
Able is culturally acceptable/dominant culture/polite society
Able promotes positive family relationships

And, with this:

Disability is sick
Disability is not normal
Abnormal is unnatural, inhuman.
Disability is bad, evil
Disabled body is broken
Disability is uneducated
Disabled is poor
Disabled is base-born
Disabled is worse off
Disabled is ethnic, not acceptable in this culture/polite society
Disability destroys families

These are just a sample, but are the type of assumptions that underlie the way we look at those that are different than ourselves.  Especially people with intellectual disabilities.  This is the rhetoric that I and a few others have been on about.  Ultimately, we in the Down syndrome community can have all the positive pics and feel good things we want, but to paraphrase Denis Leary (badly), we can have a giant kumbaya cake walk through the middle of the town square and it ain't gonna make a lick o' difference until we realize that as a society, we suck, okay?  We are all guilty of this, no matter how well meaning.  To those with actual disabilities, we parent advocates really don't have a clue and more importantly, don't seem to want to.  We are simply, a bunch of dicks.

We have to change that.  We all have to work together on this one, parent and self-advocates alike.  We have to change the rhetoric, the assumptions in our language to things like this:

Disability is natural
Disability is normal
Disability is universal
Disability is good
Disability is welcomed

Then hopefully, it will end up looking something like this:

All are natural
All are normal
All are good
All are welcomed.

Some of us are in ableist rehab and that's ok.  I'm one of them, which you know if you read [R]Evolution.  I have been a deluded individual in regards to those who are differently abled most of my life, mostly due to my privileged culture, but also due to the aforementioned medical terms through which I operate.  There wasn't a flash of insight from the gods when I had my son either... but it is through the patience and writings of many an advocate, self and otherwise, that I finally began to comprehend and move forward.

How do we do that then? How to we change thousands of years of underlying ableist metaphors?

One, we have to self-reflect, examine and then change ourselves.  How do we really feel about people with intellectual disabilities?  About our kids with developmental delays?  Do we see them as broken?  Not quite right?  Lesser?  A challenge?  (To who?  To you?) It's only going to go downhill from here? How about the other way:  are they somehow superior to your other children?  Blessed with preternatural powers?  Is that extra chromosome made of anything other than genetic material?  Do you see those with Down syndrome as anything other than an equal, than human?

Then you too need to enter rehab, my friend. 

Two, we change our practices.  Are we perpetuating othering?  Are we putting people on a pedestal?  I read this story about sexism at a blog conference and let me tell you, even though the perpetrator is not demeaning women in the traditional sense, his comments are still sexist.  In the same vein, depicting people with developmental delays as anything other than, well, people, is still ableist.  "Benevolent ableism" or "Pedestal ableism" is still ableism.  All the precious-angel-inspiraporn out there, I am looking at you.  Please stop.

It's this thinking that has me looking at things like my strap line on the blog "my kid has more chromosomes than your kid".  It's got attitude, sure, but is it ableist?  I'd really love to change it to "all our chromosomes are f☠☠king awesome" or "Team Logan:  Hell yeah!", but somebody would complain about the swearing.  In any event, I'm not sure if it is ableist or not, but it does have me thinking about it.

We also have to take a hard look at our views on inclusive education.  It is what should be done, period.  From kindergarten to graduation to even college.  No exceptions.  I don't accept the alternatives as better for anyone.  All children have the ability to succeed to the best of their own ability.  When they are not, it is our responsibility to ensure that they do.  Why is the child not succeeding?  If that means more aides or tutors, then so be it.  If it means challenging traditional approaches to education, if it means forcing the program to fit the child rather than the other way around, then do it.  Do what has to be done.  No child left behind means NO CHILD.  Not a single one, wherever they fall in the neurodiversity spectrum.

The notion that having a child with Down syndrome will plunge you into a deep depression and ruin your family has got to stop.  This is the kind of stuff that was perpetuated to promote the asylums and the institutions.  This is the story told by every doctor, social worker and health care professional since... well, they are still doing it.  It isn't true.  I'm not going to deny that there are a lot of angry, unhappy new parents out there.  Why is that, other than the perpetuation of the "disability will destroy the family" rhetoric?  If you've already been there, examine your feelings at the time.  I mean really look at them.  Is it possible that you are attributing to DS something that belongs elsewhere?  Flip the script and make sure that the supports are out there ahead of time for new parents.  If you were misinformed and didn't have a good go initially, why would you want to pass that on to someone else?  Change the rhetoric and in the mean time, don't feed it.

Step the third: Look around us and start to challenge the "norms", the stereotypes. It doesn't mean being negative or mean, but it will mean growing a pair from time to time and calling someone out, even though you may be a bit nervous about it.  Be polite, be appropriate.  Do whatever it is you need to do to get it done, but do it.  This also means that you don't have to like every organization that affiliates itself with special needs or Down syndrome.  If you don't like their practices, if they do not meet your needs or champion the rights of those with DS, do not support them.  Don't share their memes or support them with money.  It's really that simple.  Challenge paternalistic caregivers, encourage medical practitioners (and everyone else) to embrace the social model of disability.

If we stand any chance of preventing this and this from happening again, we need to make some changes.  In order to keep the Amelia's of the world from receiving substandard medical care, we need to rethink this whole thing.  We need to encourage those that have the means to create community supports so that the developmentally delayed are not 'housed', but live independently, or where they choose to live (with minimal assistance).  We need equality.  We need acceptance and inclusion.

We need to stop swinging the pendulum back and forth and just have balance.

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  1. Wonderful post, and I agree with you completely.

    The problem is getting everyone else on board with this line of thinking - with this world view. It's going to be a long row to hoe, for sure.

    1. Thank you Lisa.
      It will be a long one for sure.

  2. I agree with much of what you said, except maybe for the part about parent advocates being dicks. I know why you are saying that, I get it, truly, but it seems unfair and slightly alienating. (And not to me personally, b/c trust me, I am more than willing to accept that label for myself, but not for the many many hardworking, smart, thoughtful advocates I've met in my travels.)

    However, not why I wrote in! I'm curious how inclusive education is handled in Canada? The school systems here in the U.S. are a patch work of inclusive practices that sometimes work, sometimes don't, are underfunded or barely exist at all. They vary by school and even by child, with some parents at the very same school whose children have the same diagnosis feeling differently about their child's success and acceptance. In short, it is very complex. I am not worried about my son (yet) as he is on a good path and we know how to advocate for him. But what of all the other children with special needs who aren't being included meaningfully? Please share how it works north of the border.

    1. I'm not saying all parent advocates are dicks. However, to self-advocates in the disability community, a lot of us are seen that way.

      It is complex here as well, but I don't think for the same reasons. In Ontario, specifically the GTA where I live, we are inclusive. Period. Your IEP meets, supports are set up, life moves on. I'm still very hazy about the high school years as I am getting different reports from different parents. The variations lie not so much in school to school, but rural vs. urban and whether it is a public or "separate" school board (such as the Catholic school board). I put that in quotes as all are publicly funded. My eldest has had kids with special needs in his class every year. However, a friend of mine who lives 40 mins away had to fight with her separate school board for inclusion. The excuses were silly: We need special equipment (a step stool for the sink), he is too small for the bus (he takes a cab with a car seat), we don't encourage sign language here (WTF?).

  3. Great post as ever Jen, and we know and love you and are used to your straight talking.
    So proud to be doing talks for docs and teachers and standing on the podiums alongside those with LDs (for want of another phrase) who are standing up and speaking, making films and creating change.
    Downs Side Up

  4. So much!
    A friend of mine said in a blog once, "It's no wonder people don't believe in evolution since it takes so damn long for us to actually Evolve." (or something like that) Thought of it a lot throughout your post.
    For me, there is a tricky balance between fighting for the over all good and betterment for the future and also fighting/getting what's best for your own family. For example, I agree that schools need to be Inclusive. In In In. But 17 years ago when my son started school, I moved him to a private school because I wasn't getting that from the public schools here and he needed what he needed. The schools are Much better served now (in my area) and I am super glad for that. I bear a little guilt for not fighting that battle more than the first 5 years. But only for other parents, not for my son. He thrived in the environment we chose. But ANYWAY - that's it's own deal.
    I love your tagline. It's what made me love your blog at the very beginning.
    Keep fighting the good fight.

  5. This is a fabulous, fabulous post!


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