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 term—which I now know means intellectual disability—and 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 for—they 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 disability...is 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 things—including experiences that speak to our own weaknesses as parents—that 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 people—including those who know zip about disability— can understand that kind of human ambiguity.