Reno

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Coming clean on the word disability

I think my best writing happens when I most don't want to write about a topic.

Perhaps that's because it gets at my own ambivalence about the topic and my desire to mask that vulnerability by remaining silent. It means I'm confused and I don't know exactly how I feel. All I know is that the received wisdom on the subject doesn't sit well with me.

Today that subject would be use of the word disability.

Outside of my work at Holland Bloorview, I find I rarely use the word in conversation with people and in particular with my son Ben, who has many diagnosed disabilities. In fact, I can't remember when I last spoke about disability with Ben. A part of me thinks that I "should" be talking about it on a regular basis with Ben, to help him become a better advocate for himself.

But the truth is that in our everyday life I don't see Ben as disabled. The first quality that comes to mind when describing Ben is not disability. I see him as different, yes. Challenged by unusual and grossly unfair circumstances, yes.

I also see him as he defines himself -- as smart, funny and gentle.

I don't reduce him to what he isn't -- "lacking" in ability or the "opposite" of able, which I think is the most common mainstream use of the word disability.

In the disability community we tell ourselves a story about the word disability. We tell ourselves that it used to be a word used to oppress our loved ones, but that disability activists have claimed ownership of it and freed it from its earlier connotations.

We tell ourselves that when people hear the word disability, they don't conjure up an image of lack or loss.

That may be true within the disability community (though we still tend to view certain types of disability as more okay than others) and in places like Holland Bloorview, which have a disability-positive culture.

But when I read mainstream news or follow generic parenting blogs, I see a narrowing of who is valued and who isn't in this society. I see a rigidly-held concept of what it means to live a "productive" life and what is needed to get there, not a flexible one.

I see a culture that places more value on individuality, conformity and competitiveness than community, diversity and collaboration -- though companies and groups launch convincing PR campaigns to suggest otherwise.

I do not see an opening or shift in how people view the word disability when attributed to a person.

I see a culture that is quick to judge people as "deserving" of their situation in life. If I'm a success by Western standards it's because I worked my butt off. And if I'm not, it's because I was lazy. Most people still operate under the fairy-tale illusion that we start off equal in life.

A couple of years ago I led a workshop on how to write about disability. As I put my slides together, I remember feeling torn. Two of my directives seemed contradictory. On the one hand I told people to use neutral language devoid of value judgment: "Stay away from words that elevate people with disabilities to superhuman (saint) status or suggest they're less than human, tragic (abnormality, defect, victim)" I said.

On the other hand I gave them the seal of approval on use of the word disability. I told them that disability is the preferred descriptive term.

But there isn't anything neutral about the word dis-ability. The word "dis" is described in the Oxford dictionary as "expressing negation" or indicating "reversal of a state."

Who wants their human identity to be summed up as a negation of something?

My other son has attention problems. He hasn't been formally identified as having a learning disability, but he takes medication to improve his focus. Last night when I sat in a therapy session with him the counsellor referred to his "learning disability" while we went through a psychological assessment. I don't think he's ever heard his attention problems classed as a disability before. And I had to wonder how that sat with him.

In his head, was he thinking: "I have a negation of the ability to learn?"

No, he wouldn't know the dictionary meaning of the word "dis," but he'd know intuitively that it was bad. When you diss someone or something, you put them down, right?

And if we were judging the precision with which the term "learning disability" allows you to envision how a specific child's mind works or how they live in the world, would you give it an A?

It's the same when applying the word disability to a physical or developmental disability. It tells you almost nothing about the package of qualities that is that person.

Sometimes it will hit me when I'm doing an interview, how clunky, inadequate and biased the word disability is as a descriptor. I'm so used to letting the word roll off my tongue that I don't hear it the way the average person does -- the way people outside our community do.

And I'll catch myself feeling stupid when I ask someone to comment on something related to "kids with disabilities" -- as if this diverse population of human beings could be lumped into a separate species.

Disability in the common vernacular is about what isn't -- it's the absence of something that our culture has deemed good.

It would be as limiting and non-descript as saying I was non-male or non-hair (I have alopecia) or non-young. It doesn't say anything about who I am.

Recently I wrote to Xavier Le Pichon, the French geophysicist who helped create the field of plate tectonics. Contrary to popular Western conceptions about what makes a person human, Le Pichon believes that fragility and empathy are our defining traits. While developing his scientific theories, Le Pichon lived in the original L'Arche community for people with intellectual disabilities. His children grew up there.

"Our culture views disability as a loss, as taking away an essential part of a person and diminishing their value," I wrote to Le Pichon. "How do you view disability based on your time living in L'Arche?"

"In L'Arche, I do not think of...persons as having disabilities," he said. "They are just friends. I consider some of them as being the closest friends I ever had. When you love somebody, you do not think of him as having disabilities. He is what he is. That's it."

It reminded me of when I visted L'Arche in France in the summer. When I asked questions about people with disabilities there, I was met with a blank look. Just who was I talking about? Was I really that coarse and simplistic in my use of language? At L'Arche they don't use the word disabled. It isn't in their lexicon.

I get that in order to acquire funding for the services our kids need, they must be categorized.

But on a personal level, I don't think the word disability plays a big part in many family's lives. I think families are more focused on what their child "is" -- which is immense and can't be quantified in words -- not what they aren't.

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Dad's age a small risk factor in autism

I was concerned about this study's impact on how our culture views a parent's role in “causing” disabilities like autism. So I was pleased to interview Dr. Evdokia Anagnostou and learn that while helping us understand the jump in autism rates in a large population, the study does not identify father's age as a major risk factor in individual cases. Louise

Father's age linked to autism risk, but overall risk is small

Men in their 40s are more likely than those in their 20s to father a child with autism or schizophrenia, but the overall risk is still low – about two per cent – according to a study published online in Nature last month.

“The majority of babies born to 40-year-olds are healthy, but the study helps explain some of the increased risk in a huge population – which helps explain some of the rise in autism rates in the last couple of decades,” says Dr. Evdokia Anagnostou, a child neurologist who leads a clinical program in autism research at Holland Bloorview.

Researchers in Iceland examined genetic material from 78 parent-child trios, where parents with no signs of mental illness gave birth to a child who later developed autism or schizophrenia, and a control group.

They found that as men aged, they transmitted more random mutations to their child at or near conception. The average child born to a 20-year-old father had 25 mutations linked to the father. This increased by two mutations a year to reach 65 for children of 40-year-old men. The mother’s age had no impact on risk.

“Lots of random genetic changes happen with age and the majority mean zip,” Evdokia said. “It’s the rare ones that lead to syndromes like autism.”

However, the more mutations a child has, the more likely he or she is, by chance, to have one of the rarer, disabling ones.

The study is important because it helps explain the biology of autism, which may aid in treatment. “If we understand the pathways from genes we discover we know where to focus our efforts.”

Evdokia emphasized that autism is “a multi-factorial disease that can’t be prevented at this point. Paternal age can now be seen as one of many contributors to risk – but it doesn’t explain the majority of risk.

“There are many, many reasons why you may end up with a child with autism and if the father is older the child gets this extra little hit. But most of the time a child needs to have many hits to get autism.”

Other factors that increase risk include a father's genetic makeup, such as having a sibling with autism; the fetal environment, including infections during pregnancy and exposure to fertility drugs; and possibly some environmental toxins.

“Some kids will have enough of a genetic hit to cause autism and some will have a genetic risk that interacts with one or more environmental factors.”

Evdokia said that the study is helpful in explaining the increase in autism rates in a huge population – but doesn't identify father's age as a major risk factor in individual cases.

“If someone asks me ‘Do you think I should not have a baby because I’m 40?’ I would say you absolutely should have a baby. The majority of babies born to 40-year-olds are perfectly healthy.”

In addition to improving our biological understanding of the disorder, Evdokia hopes that studies like the Nature one focus research on “the real reasons for autism – so people don’t get stuck theorizing about things like vaccines or power lines, for which there is no evidence.”

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Noah in Times Square

Noah was one of the kids featured in a video by the National Down Syndrome Society that aired on the Jumbotron in Times Square Saturday as part of the New York City Buddy Walk.

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A place to call our own

By Stacey Moffat

My son Carter (above) has repetitive behaviours and sensory issues. He’s non-verbal and struggles with social skills. Yet he doesn’t have autism.

Carter’s fine-motor skills are weak. He used to drool (before he had surgery) and has problems with motor planning and coordination. But he doesn't have cerebral palsy.

He’s developmentally delayed and has low muscle tone. But it’s not Down syndrome.

Carter's got a smorgasbord of problems that he shares with peers who have autism, cerebral palsy and Down syndrome. But the smorgasbord doesn’t lend itself to any specific diagnosis, other than the catchall "global developmental delay." So we've missed out on the benefits of being part of a defined community, a support network.

Although speech problems are part of the worlds of autism, cerebral palsy and Down syndrome, parents seem to stay rooted within their child's diagnosistic group. No one branches out to form new groups based on common needs, like communication. Who can blame parents for sticking with their groups? If I was part of an organization that offered resources and support and access to loads of parents who’d blazed a trail before me, I’d immerse myself in that group and stay put too.

I tried to do just that when Carter was born. I joined a support group for parents of children with a cleft lip and/or palate. I wanted to learn from other parents and give back by sharing my own experiences.

But as time went on, Carter seemed to be lagging behind the other children. Other parents talked about their kids speaking and meeting typical milestones. I began to realize that Carter was different. He wasn't a textbook case of a child with Pierre Robin Sequence and a cleft palate. But I didn't understand why.

Although I enjoyed the sense of community, I became anxious with the questions new parents were asking: “How is your child doing now that he’s had the cleft repair surgery? Is he having any issues with specific speech sounds? Do you think he’ll need speech therapy?”

I didn’t know how to answer their questions. "No, Carter isn't having issues with specific speech sounds because he isn't attempting to speak!"  I felt a panicky need to ask my own questions: "Your child is starting to speak? How? Why isn’t my son speaking? Isn’t it normal for there to be a speech delay? Why is my son different? What's wrong with him?"

I didn’t ask my questions. Instead, with great sadness, I concluded that the support group was no longer a good fit for us and stopped going.

I was isolated. We were dealing with something bigger than a birth anomaly and our issues went beyond what this group was designed to support. But where would we find support when we didn’t really know what it was we were dealing with? Our issues didn’t fit neatly into a package like Down syndrome or autism or cerebral palsy.

I felt like a drifter, alone at sea in search of answers. What was going on with my son?

My search led me to a speech therapist from the United States who specialized in oral-motor issues. She diagnosed Carter at age five with childhood apraxia of speech and dysarthria. Armed with this information, I was hopeful. Perhaps there was a new speech community we could call our own.

I went to a conference in Pittsburgh by the Childhood Apraxia of Speech Association of North America. This was it, I told myself. I was going to educate myself and make connections with parents and therapists who understood Carter’s speech problems.

I mingled and chatted. I listened to parents tell stories about their challenges to get their children to pronounce specific consonant sounds and string words together. I even attended a couple of sessions on how to work with children to improve speech clarity. Speech clarity? I didn’t have a clue what these parents and therapists were talking about!

Carter’s speech consisted of monosyllabic vowel sounds. He had no consonant sounds. There had never been any babbling – unintelligible or otherwise. Why was I attending a workshop on speech clarity?

We didn't fit into this new speech community either. We were like square pegs and I was trying to fit us into round holes. The realization was devastating.

Shortly after that conference I sent a video of Carter making his limited sounds to Nancy Kaufman, a speech therapist and renowned expert in the area of apraxia. After viewing the recording, Nancy phoned me and, with great compassion, told me to find Carter the best voice device possible.

That’s what I did. And it opened up a whole new world for Carter. He uses his talker at home and at school and he’s starting to use it more when we’re out and about. He makes comments and requests. He asks questions. And he now has a much easier time interacting with everyone, most importantly, his peers and siblings. A goofball at heart, he loves making people laugh with his jokes. And, like his brother and sister, he’s discovered potty humour (he loves the underwear key on his talker).

Carter has had his talker for just over two years now. But we still feel alone. It’s been hard to make connections with other parents of children who use devices. I don't believe it's because they're not out there. I believe it's because we’re small in numbers and we’re all taking separate routes to a similar destination.

If Carter could get together with other children who use talkers I believe it would motivate him. I also think it would be good for him to be around others who communicate at a slower pace. Too often he gets short changed because people don’t allow him the time he needs to say what he wants to say.

I’ve floundered in search of a supportive community for Carter his whole life. Sometimes I’ve felt bitter that Carter doesn’t have a diagnosis that would allow us to fit into a well-defined group. But I’m trying to look at things differently now. Carter just turned nine. I can relate, somewhat, to many parents of children with special needs, because Carter shares traits with each and every one of their children. And for that I am grateful.

I do still have a dream, however. It's that parents whose children use voice devices (no matter what their diagnosis) come together in a supportive group of their own. If you’d like to be involved in an AAC network, please e-mail me at snmoffat@gmail.com.

Stacey Moffat is a former teacher raising her three kids. She volunteers with ISAAC Canada and Gail Fisher-Taylor of Kilometres for Communication to create an AAC network. She blogs about raising a child who communicates differently at More than Words.

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Are people with disabilities a new economic market?

Rich Donovan (above) was a trader for Merrill Lynch who started Lime Connect, a non-profit that helps companies recruit people with disabilities at the college and professional level.

Donovan is now CEO of Fifth Quadrant Analytics, which provides corporate clients with tools to capitalize on disability as an emerging global market. Here, people with disabilities are seen as consumers, talent and taxpayers.

"In the last U.S. census, 19.6% of the population thought of themselves as having a disability," Donovan writes in Essential Accessibility. "That's not a political or medical designation, but rather how people see themselves, and how their purchasing habits are shaped. If you include close relatives as well, people with an emotional connection to disability climbs to 53% -- over half of the population.

Read more about Lime in this Wall Street Journal piece.

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First class to no class?

Watch the video (click above) and judge for yourself whether this teenager was behaving in a way that would make him a "flight risk" sitting in first class with his parents on an American Airlines plane. To make matters worse, when the family was rebooked on a United Airlines flight, they found themselves seated in the back row of the plane with two empty rows of seats in front of them. For the protection of the other passengers? From first class to no class?

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