Thursday, November 21, 2013

And the truth shall set you free

I remember when my son was still a baby, a psychiatrist told me that I needed to play a "PR role" in how I introduced him to others. He said people would make judgments and assumptions about my son's genetic condition, so I had to script a story that played up all of his strengths and minimized any impacts the syndrome might have on his health or development.

This didn't seem like a bad idea, initially. I was over the moon in love with my son. I expected others to see him the way I did: as a tiny Buddha, whose smiles were bookended with dimples, a baby who loved to babble, grasp medical residents' fingers, and listen to books about Elmo and exotic animals.

The only problem with this selective crafting of our story was that it made me feel a bit like I was wearing a mask. I brushed off concerns about my son's genetic deletion by saying "it just means his ears stick out. The worst-case scenario is that he might have a mild learning disability."

This was, in fact, the sanitized version of his syndrome that I received from the geneticist who diagnosed him, minus a couple of pieces of information (that he might have problems with bony growths and hearing, and that 75 per cent of these children had mild to moderate delays). Some of the information, like the stat about delays, I didn't understand. I didn't ask for clarification on the termwhich I now know means intellectual disabilityand no one offered it. Instead, I grabbed the vague descriptor like it was a Get Out Of Jail Free card.

I was meticulous with language. I didn't use the word "syndrome," which in my mind was associated with intellectual disability. In fact, for the first year or two, I didn't even consider my son to have a disability. When my sister-in-law suggested we might apply for some funding for kids with special needs due to his low muscle tone, I proclaimed: "But he DOESN'T have a disability!"

We'd been told that because his genetic condition was so rare, we couldn't predict how it would affect our son. So I was his spinmaster, weaving a narrative about his life that I felt was most likely to win acceptance with others and calm my own fears.

The problem with this "heavily edited" approach to disability is that it delays thinking about and coming to terms with differences and how they're viewed in our culture. It delays thinking about your own values as a parent and how difference fits with those values. It delays having to trash a bunch of simplistic platitudes you may have been raised on, like: "If you just try hard enough, anything is possible." It also creates an atmosphere of shame, of the need for secrets. If your story ever slips, what does it mean for your child's value? Or your own?

In short, writing and religiously promoting a story that denies or "airbrushes" out the challenging parts of a child's complicated condition stifles your own emotional growth as a parent and puts tremendous pressure on a child. It weakens our humanity, which I believe is based on an understanding that human life is full of fragility and vulnerability and ambiguity.

So whenever I hear parents of kids with disabilities or people with disabilities up in arms over what "can" or "can't" be said about disability I get uncomfortable.

The most recent instance was triggered by this piece by Autism Speaks' co-founder Suzanne Wright, whose grandson has autism. She wrote it as a kick-off to the organization's summit in Washington calling for a national plan to address autism, which she refers to as a crisis. She depicts autism at one end of the spectrum, describing children "unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help."

That is a reality for many people with autism and their families. There is no shame in that reality.

Hundreds of people responded to Wright's piece, many adults with autism and parents of kids with autism. Much of the feedback can be summarized in this response from an adult with autism: "Why do you make us out to be monsters? Why do you insist parents be devastated by their child's existence?"

My son doesn't have autism, but because of his lack of speech and intellectual and physical disability he needs to be supervised. He can't go out on his own, he can't make a phone call, and he sometimes needs help with personal care.

He is dependent in a Western culture that abhors dependency and idolizes individualism and self-sufficiency.

I don't believe this particular piece by Suzanne Wright strips people with autism of their value.

I do believe our culture does that quite handily, and not just with people with autism, but with any person who's not independent, anyone with a visible mark of vulnerability. You see this in our treatment of the elderly and of people with a variety of developmental and physical differences over the lifespan. You see it in our society's treatment of people with dementia.

You even see it in the awkward way that we treat people with cancer who aren't able to "conquer" it. Meanwhile, there's a massive industry catering to our collective delusion that we're not aging and creeping closer to death.

I'm aware of the many criticisms of Autism Speaks: that it doesn't have people with autism on its board; that its marketing efforts have often positioned autism as something that we need to stand in opposition to, rather than as an integral part of a person; that not enough of its funding goes to innovative supports for people living with autism.

I think those are valid.

But when a family member of a child with disability is censored in their description of their family's experience with it, I find that problematic.

Perhaps that's why this post by my friend Meriah at With A Little Moxie got under my skin. She begins by saying she's "deeply disturbed by parent bloggers writing...their particular spin on 'special needs.' On disability." (Meriah has a disability herself and is raising a child with a disability)

Meriah argues that too often we parent bloggers give mainstream readers what they "want" to hear: "They yearn forthey crave!"she writes, "the stories of how you are so jealous of them. How life is harder for you. How challenging it is to care for your child with a disability. You throw them some fodder for some inspirational porn and they'll swallow it with one gulp."

Really? That hasn't been my experience. My experience writing about raising a child with disabilities is that most people outside the disability community would rather not hear anything about disability. That silencing is a form of our children's marginalization.

In large part, kids with disability, especially severe disability, don't exist in popular media. They're rendered invisible, and that's how most people like it. Or they're seen as a tiny "anomaly" in the child and family landscape, so foreign that parenting magazines don't routinely include them in generic photo shoots and conferences for parent bloggers run a separate stream for "special-needs parenting."

And if North American readers want to hear anything, they "want" to hear that we've made tremendous strides in mainstreaming and acceptance and that discrimination against disability is a thing of the past. They love any opportunity to pat themselves on the back.

Meriah goes on to tell us that as blogger we need to make a choice. Which do we care about more?

Sharing "a story that ultimately perpetuates the myth that this awful, fearsome, pitiable, to-be-avoided-at-all-costs thing?"

Or sharing a story that will help to weave "rich new fabric that those of us who believe in the independent living movement are struggling to weave?"

Is our experience with our kids really that black and white? Is any aspect of life, disability or not?

Meriah advises parents who are struggling with their child's disability to seek comfort in parent support groups, but not to write publicly about it. In one of her comments she says that the kind of writing we should avoid (read censor) falls into the "woe is me" approach.

Instead, when writing about disability, we should "do so with an eye on social justice and social change," which I assume means editing our stories in the hopes that these "mainstream-friendly" versions will change people's perceptions of what disability is.

To me, this sounds too much like the PR that psychiatrist advised me to undertake years ago on behalf of my infant son.

And it reminds me of how BLOOM readers sometimes respond to studies we report on that suggest disability creates extraordinary, sometimes damaging, stresses on parents and siblings. They will check off "Not helpful" in the comment box at the bottom of the post.

Which always makes me wonder: Do they expect us to burn studies that don't report the findings we "want" to hear? Would that be more helpful?

For me, being real and as truthful as possible, is always the route to go. It doesn't mean you don't strive for balance. But you don't set out to delete thingsincluding experiences that speak to our own weaknesses as parentsthat you "wish" weren't true.

Which brings me to Ellen Seidman's post on Love That Max today. Ellen struggles with the grief she still feels over her memories of discovering that her newborn son Max had suffered a stroke. Implicit in her writing is the idea that now, as he's about to turn 11, she should just "get it together" and let the grief go, expunge it, move on.

It's a pain that flairs up annually, just before her son's birthday, she says. Last year she thought about returning to the NICU to try to recreate (read "edit") her experience of it. "Surely that could help exorcise the grief demons," she writes. "I had fantasies about sneaking in to the NICU."

Fortunately, (I think!), Ellen doesn't make the pilgrimage back to the NICU. Instead, she writes: "The grief, I suspect, will always be a part of me. I need to quit struggling with why it's still there. It says nothing about my life now, my motherhood or my love for this boy, who is the best therapy of all."

I think most peopleincluding those who know zip about disability can understand that kind of human ambiguity.


Louise, this is a wonderful post. It is profound and really important for people to hear and to discuss. Personally, I can't stand sanctimonious parents who believe that all challenges are a 'gift', nor can I stomach the misery porn. I feel comfortable with the expression of ambiguity, because that is what I feel. I think Wright's letter was perhaps too weighted on the side of pity party, but she was making a political point on behalf of families who are in crisis. She did it at the expense of the kids, though. And I felt uncomfortable reading it. That said, in advocating for Nick's needs over the years, I moved from "we're OK, Nick is great!" to "our family is in crisis, I am failing as a Mom and I can't manage my son's needs." Thank you for a VERY thought provoking post!

"Breakin labels" by Robb Scott: Louise, have you seen this? Would like to hear what you and others think about it.

Louise this was a nice balanced piece trying to make sense of different viewpoints, ending with the the quote from Ellen. Personally I don't find that quote the least bit ambiguous. Of course it is a written statement and does not reflect what she is feeling from moment to moment.
The problem for me is that there should never be an effort place a blanket proposition on disability writers. Some should be extreme in their depiction while others should be mild, as well as everything in between.
I don't believe too many writers agonize that what they write will put people off, if they did, perhaps they indeed should not be writing. Editing and revising your writing is essential but more essential is to be honest and to be yourself.
The 'pity-garnering' aspect that seems to be flung around as a criticism, nearly as an insult, is to me rather despicable. Extreme disability is a hard road for the caregiver as well and what that person writes comes from the pain, utter fatigue and confusion that is natural to having your world turned upside down. It is tragic what goes on in life and that does not mean that someone is merely writing something to 'throw a pity party'. By the way, what would be wrong with that? You want empathy, you need support when you are feeling weak and devastated by your situation. A few supportive words can do wonders in a dire situation! Finally there is tragic and there is tragedy. One of the distinction is how much you see yourself as victim. But even here this is a process that we go through, in trying to regain balance and some approach it later than others and will succeed to a different degree from others. To pass judgment on other parents, in these situations, is incomprehensible to me and the reactions to the article by Wright show just how narrow minded we can all be.

I will second everything Donna and E. Fischer have so eloquently said. One of the things that bothers me in many blogs and articles about disability I have read is that they are all heavily weighted towards one side or the other. "My kid is great! Disability is just another kind of normal!" and "This is devastating and no one should have to go through this." I find myself wanting to balance things out in the comments but it comes across as throwing cold water on them (oh things are find now, but wait...) or negating their feelings & situation (oh it can't be *that* bad surely), neither of which is my intention. I guess I just want all the range represented, or at least acknowledgement of the fact that there *is* a range. Not everyone is high-functioning just as not everyone is severely affected. A lot will be in the middle. Some may even have things they do on the "high" end of the range while other functions end up on the "low." They might be some of each in different areas. In the end, we should all be able to write about our experience as just that, OUR experience.

I'm very interested in this dialogue, though as someone who is not a parent but merely works with children with disabilities and their families, I don't feel I can really contribute. I would be interested to know how parents feel they could have been best supported in that time where they are realizing what's "wrong".

I'm also loving the post. Thank you. I really think that people write what they feel and whatever that is it is valid. Whether it's "pity me" or "don't you dare pity me" that just says more about the personality and where in the journey that particular writer is. We are all different caregivers and deal with our challenges differently. As for the readers, same thing. Some people will just admire my strength in dealing with what happened to my son. Some act like it's a huge tragedy and feel sorry about it. Others downplay it and think all is better and think we have it great because of his great recovery. I told my mother that at his new school the older kids are definitely "different" and that our son shows promise beyond where some of them are and she said she was "glad to hear that he was not like the other kids". That's not what I meant at all! She chooses to distance herself from disability. I rather embrace it but obviously want the best for my son's outcome going forward and was just observing that I feel fortunate that he is doing as well as he is and I really felt for the parents of the older kids who clearly have it hard than I do. It's *all* ambiguity. There are good days and bad days. You feel great about things, then you compare and feel shot down by things. It's just how things are and I don't worry about who I might upset with my writing. I am more motivated by telling my story and happy for those I inspire or motivate myself. It's not about me what others read in my writing. Thanks again Louise.

You are so brilliant. This is one of the best posts I have ever read about facing the complex realities of life and yet not losing our humanity and tenderness. You have given me much to think about.

Beautiful.....thank you!

I am not keen on the PR approach, but I believe I consciously took on a similar kind of approach for a different reason when my daughter with special needs was born 13 years ago. I was not trying to "play up" her strengths, but I was clearly communicating that I loved her deeply, that she could look in my eyes, that she could do lots of things, and yes, she also had a disability. I found that if I allowed another person's response to the news about my daughter being born with a disability to take place prior to me sharing how I was responding, then I was often very hurt by their response...because it was often one that was full of pity. So I offered my response to be honest, to educate, and to provide a shield. Maybe the "to educate" part is a bit of PR...but I see "educate" as having more of a moral dimension than PR...not sure!

I agree that being real and truthful is generally the way to go, but I have to say that I do not have a consistent response to what I hear, see or each experience is so unique and the factors that make it unique lead me to respond in different ways. And some of those factors are about me, e.g., I am just having a bad day...and it is usually not because of anything related to my daughter having special needs! Just a regular bad day, or bad hour! But today is a good day....thank you for the good read!