Thursday, December 3, 2015

We need disability rights, not days

By Louise Kinross

Today is International Day of Persons with Disabilities.

I’m not a fan of awareness days.

I know they’re unlikely to prompt us to unearth the unconscious biases we hold toward marginalized groups.

These are unstated stereotypes we pick up as children, as if by osmosis, and which get passed down from generation to generation.

They explain why a French study in 2012 found that adults who say they accept children with disabilities carry a negative bias towards them that only shows up in implicit association testing, which gets at our thinking at an automatic, unconscious level.

The theme of disability day this year is “Inclusion matters.”

Last month I read this brilliant Time essay about inclusion and race by author Annie Murphy Paul: The Yale controversy is really about belonging.

It's about how Yale University's intercultural affairs council asked students not to wear costumes at Halloween that mocked a culture or ethnicity. When a staff member pushed back, saying “if you don’t like a costume someone is wearing, look away,” minority students protested.

“I never thought about my race,” writes Annie of her time as a white student at Yale in the early 1990s. “I never had to. Nor do I remember thinking much about the fact that almost all of the servers at the [Freshman Holiday Feast] were black, or that none of my professors were.”

What was really at stake in the costume uproar, she writes, was whether students of colour felt they belonged.

In fact, studies show that a sense of belonging is critical to learning, says Annie, whose book Brilliant: The New Science of Smart will be published in 2017.

“We humans are social beings, wired for membership in a group,” she writes. “Mental resources devoted to monitoring one’s environment for cues of rejection, to fending off suspicions that one doesn’t belong, are mental resources that can’t be allocated to understanding and remembering academic content.”

Bingo! I thought. It so perfectly applies to inclusion and disability. For students with disabilities who are mainstreamed, but in name only, or educated separately from peers, how do feelings of not fitting in interfere with the ability to learn?

That made me recall a Holland Bloorview review of 56 studies that show children with disabilities have fewer friends and smaller social networks than their peers.

Last week University of California scientists reported on how loneliness changes white blood cells, making them less able to fight infection and explaining why socially isolated adults are 14 per cent more likely to die early than peers.

Research groups in different countries are studying friendship, or the lack of it, in disabled children, young adults and even seniors.

But here’s the problem. I keep reading that they want to define what friendship “means” to children or people with disabilities.

I think that’s completely backwards. Because I think friendship means the same thing to all human beings. 

People with disabilities don’t have fewer friends because they have a different concept or understanding of friendship. Yes, there may be significant communication and physical barriers. But the main reason they have fewer friends is because of those unconscious stereotypes our culture continues to root in children’s minds, the ones that say: “disability is less and difference is not okay.”

Why don’t we instead study children who stigmatize others? Why don’t we study how stereotypes, about race or disability, influence friendship patterns? Why don’t we study the behaviour of people in privileged positions who exclude? Why haven't we figured out how to make people recognize their own deeply held prejudices, much less to change them? In effect, why is all of the research focused on the marginalized group, rather than the marginalizers?

“Simply put, my existence is not valued,” wrote William J. Peace last week. Bill is a visiting professor at Syracuse University who was paralyzed at age 18 and writes at Bad Cripple about life in a wheelchair.

“First and foremost bipedal people observe all the things I cannot do. Bipeds are wary of the handicapped. We are different. Our identity is spoiled. Stigma abounds. Wheelchair use is always framed as being bad. I am wheelchair bound. Oh, the tragedy! Let’s not upset the handicapped. Let’s treat them as special. Special equals segregation. Society does not want nor value wheelchair lifts on buses. Let’s create ‘special’ transportation in the form of substandard para-transit."

Bill was writing about assisted suicide legislation, and how it puts people with disability at risk. “I do not suffer any more or less than the typical biped,” he writes, yet a doctor offered "to end my suffering by forgoing life-saving antibiotics.”

Last month, young adult author John Green (The Fault in Our Stars) posted an interesting vlog (the video equivalent of a blog) in which he discusses his mental illness. 

It takes a while for him to get into the topic, but be patient.

“I find it difficult to talk about my own experiences with chronic illness because the central way we imagine sickness as a thing that we must ‘conquer’ and then put behind us doesn’t really apply to chronic illness,” he says. “Like when you go to the store to get a card for a sick friend, you go to the “Get well soon” section. For people living with chronic illness, it isn’t a question of ‘getting well soon.’"

In children’s rehab, there's a language of "potential" that also assumes the child gets "better" or changes in some fundamental way. 
Johannesen refers to the “tyranny” of chasing her son's potential in a fascinating piece in the December issue of Brainstorm, a newsletter about ethics, neuroscience and society.

“Our therapists were creative and energetic,” she writes. “Together we heroically embarked on a years-long journey to help Owen ‘reach his full potential.’” It didn’t seem to matter, she writes, that Owen, who had severe, multiple disabilities, wasn’t meeting any of the goals set for him, or that she was feeling increasingly futile.

It seems to me that “potential” is an onerous burden we place on children and people with disabilities in a way we don’t their peers. No one is walking around questioning whether I have achieved my potential, or lamenting the ways in which I haven’t (and I’m sure there are many, please don’t point them out). There is something about “potential” that works against seeing a person’s value as inherent and unchangeable. Am I more worthy if I reach my “potential?” Who decides what my “potential” is?

A reader on Jennifer's Facebook page posted this comment on her piece: "Hmmmm, interesting perspective. I often write letters advocating for services/accommodations/interventions using 'to maximize his potential.'"

"We had to play up potential all the time, to get services, equipment and funding," Jennifer wrote.

"I agree that referring to maximizing 'potential' is necessary in advocacy," I responded. "Why? Because in our culture, potential means 'value.' It has currency. Children can be denied therapies because it's thought they have no ability to 'progress.' It's all an interesting reflection of our culture no?"

Potential is always focused on something in the future, some way in which we’re going to become ‘new and improved’ versions of the human beings we are now.

It doesn't look at how systems, environments and attitudes today privilege some and disable others.

"Despite 40 years of progressive legislation designed to empower people with a disability and make our lived environment barrier free most people are uncomfortable in the presence of those with an obvious disability," Bill writes. "Moms pull their kids away from me in the supermarket and tell their children 'watch out for the wheelchair.' Handicapped seating is often substandard and in the worst location in various auditoriums nation wide. It is never easy to navigate restaurant aisles. Purchasing a ticket to a sporting event requires multiple phone calls so a given venue can provide disabled patrons special service. Not a day goes by when I am not made aware of my disability. The people I know with a disability are equally aware. We know a cultural divide exists between those with and those without a disability."

Sometimes the hidden stereotypes we carry about disability come tumbling out in the most unlikely of places.

This week the president of America’s largest teachers’ union apologized for referring to students with disabilities as “chronically tarded” in a speech she gave at a Campaign for America’s Future gala.

Her excuse? She meant to say “chronically tardy” but inadvertently said “tarded” as in “retarded.” 


Louise, this is such a profound and well thought essay to wake up to. I will be thinking about your words all day. People are not broken. Why are we trying to fix them?

I was especially taken with these words from Jennifer's essay: "His last few years of life were spent with people who loved him, doing things that were enjoyable for all." Love. Acceptance. Celebration. That's what all our children need.

I really like the way you bring together several threads of discussion to make your points Louise - single voices are important but so much more compelling when brought together.

Thank you, Louise, for this wonderful Thought-full post. I can feel it comes from your heart and your mind.

These threads of discussion provoke much thought for me. AND feelings, being an adult with multiple disabilities.