Friday bonus watch

This short film about living with a dad who has cerebral palsy, uses a wheelchair, and communicates with a pointer and letterboard, is now available on YouTube. My Dad Matthew is seen through the eyes of Elijah, who was then 14, and considers his father Matthew “a pretty normal dad.” 

Want to hear directly from Matthew, who's a professor in disability studies at Northern Arizona University? Read our interview with him. Happy Friday!

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Ending stigma is an inside job

By Louise Kinross

Yesterday I was interviewed by someone who’s writing a paper about stigma.

I got to answer questions about what disability stigma is and how we might help eliminate it.

Years ago I came across this useful definition: Stigma is “the recognition of difference based on some distinguishing characteristic, or ‘mark’ and a consequent devaluing of the person...Stigmatized individuals are regarded as flawed, compromised and somehow less than fully human (Dovidio, Major and Crocker, 2000).” 

People who are “marked” in this way are the target of prejudice, avoidance and rejection.

Of course what causes a person to be “marked” depends on what’s valued in a culture.

Those messages—and their flip side, a negative bias towards those who don’t measure up—are passed down from generation to generation.

The values that drive stigma are no mystery. They are not somehow “out there,” generated by other obviously “less enlightened or sophisticated people.” They are in each of us. They are what we learned, often implicitly and before we could understand, about who matters and who doesn’t.

These values played out in the elementary school I went to, without a single child with a disability. Absence speaks volumes about who is welcome.

They were in our neighbourhood where, as a young girl, I watched a teen with Down syndrome being dropped off from a sheltered workshop in a station wagon. He was the older brother of two of my friends, and he ran, head down, into the house. Why did he run with his head down? I didn’t know, but I knew something wasn’t right, something wasn’t fair.

The researcher who was interviewing me about stigma recalled how in Grade 3, a child with a disability joined her class, and everyone made fun of him. More of those cultural values, talking loud and clear.

Recently some members of Holland Bloorview’s children’s advisory council were interviewed about their lives. “There’s not one day where I don’t sit at lunch alone, because nobody wants to sit with me,” said one teen, who uses a wheelchair. What does that say about which bodies are valued in our culture, and which aren’t?

In 2017, people with intellectual and physical disabilities are routinely denied transplants. Here’s one recent story in the Washington Post about a young man with autism who inherited a heart condition from his father. His father died from it, and he will too, without a transplant. As the reporter notes: “...mentally disabled people are turned down for organ transplants often enough that their rights are a rapidly emerging ethical issue in this corner of medicine, where transplant teams have nearly full autonomy to make life-or-death decisions about who will receive scarce donor organs and who will be denied.”

We all know about the North American pandemic plans that exclude people with intellectual and mobility disabilities from accessing a ventilator when there’s a scarcity. Can anyone say “value judgment?”

In 2012, a French psychologist published a study that showed that adults who say they accept children with disabilities carry, at an unconscious level, negative stereotypes about them.

In the study, published in the journal PLOS One, 165 adults were asked to rate photos of children with Down syndrome and photos of typical children. Participants then did implicit association tests, which capture the strength with which certain groups of people are automatically—without conscious awareness—associated with positive or negative attributes.

Participants included 55 young adult students, 55 adults and 55 caregivers who work with people with intellectual disabilities. In each group—including the caregivers—photos of children with Down syndrome were automatically associated with a negative trait. This was found in people who had openly rated the photos of children with Down syndrome positively.

“These implicit associations are the result of social values…carried by our culture,” says lead investigator Claire Eneau Drapeau. “These are likely deeply embedded, and difficult to break. Nobody is immune, even people who have contact with the stigmatized group.”

What this means is that each of us carries these negative ideas about people with disabilities—and other marginalized groups—in our minds. How do we free ourselves from them?

Only through awareness, “can we choose to try to change them, to struggle,” Drapeau says.

The first step is to look inside and do your own inventory. Go back and excavate these messages. Things you’d never say out loud, which aren’t politically correct, but which you learned through what you saw and heard as a child.

Say them now, out loud. Talk about them with your family, colleagues and friends. Some of these ideas, about how our worth is linked to what we do and produce, are no different than the ones the German Nazis used during World War II to justify the genocide of disabled children and adults. They called them “useless eaters.”

Before we adopted two of our children, my husband and I attended a workshop on interracial adoption. Part of it involved each parent listing, and talking about, the common stereotypes about the race of the child they were going to adopt. This was not a fun exercise, but it was a necessary one.

It struck me, during my conversation with the person researching disability stigma, that we don’t have to search outside ourselves to pinpoint or understand the prejudice associated with disability.

We don’t have to conduct elaborate research studies asking disabled people to tell us about the discrimination they face—as if we had no idea (and as if negative ideas about disability were foreign to us). 

The social values that fuel disability stigma are in each of us. Until we examine these ideas in our minds, how can we see how they influence us and break out of them? Expanding our concept of human value, beauty and diversity is not a passive act. It requires mental work.

And let’s not forget that stigma exists within the disability community itself, in countless ways in which certain kinds of disabilities are favoured over others. 

In the award-winning book Far From The Tree, Andrew Solomon writes about parents raising children so different from themselves they can appear alien: children with a variety of disabilities, musical prodigies, transgender children and children conceived in rape.

Ironically, while these groups all face stigma, during the writing of the book, their families attempted to distance themselves from each other.

The parents of child prodigies, Solomon writes, didn’t want to be included in a book with families of severely-disabled children. People with autism insisted that those with Down syndrome had lower intelligence than them. Deaf people didn’t want to be associated with people with schizophrenia.

So again, these cultural ideas are present in our minds. Examining them honestly, and taking up “the struggle” that the French researcher described to chip away at them, is a choice.

So too, is continuing to operate on negative biases we hold at an automatic, unconscious level.

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France upholds ban on Down syndrome ad: Children too 'happy'

By Louise Kinross

In an extraordinary decision, the Council of State in France has upheld the decision of the country's TV regulator to prevent this video, whose message is that children with Down syndrome can be happy, from being seen on French TV.

The ad, launched by Italy's CoorDown and Satchi & Satchi for World Down Syndrome Day in 2014, has been viewed on Youtube over 7 million times. It won six awards at the 2014 Cannes Lions International Festival of Creativity.

The idea for the ad came when CoorDown received an e-mail from an expectant mother whose child had been diagnosed with Down syndrome: "I'm scared," she wrote. "What kind of life will my child have?"

The ad, called Dear Future Mom, is a response from a number of children and teens with Down syndrome. "Your child can be happy" is the message. "He'll be able to hug you" says one young man. "He'll be able to go to school" says another young woman, "and work and earn his money" say two girls.

In June of 2014, the French TV regulator said it was "likely to be controversial" and was not "a message of general interest." Earlier that year several French channels had aired an excerpt free of charge at the request of Down syndrome associations.

According to Fondation Jérôme Lejeune, a French Down syndrome research and advocacy group, the original decision to censor the ad came after complaints from two women who had terminated pregnancies due to a prenatal diagnosis of Down syndrome. They issued a news release last week suggesting the Council of State wanted to hide pictures of children with Down syndrome who look happy.

The TV regulator considered the ad's message likely to "disturb the consciences of women who, in accordance with the law," had chosen to have abortions, this article in Le Monde reports.

Jérôme Lejeune had asked the Council of State to intervene on the regulator's ban. It says it will bring the matter to the European Court of Human Rights and argue that people with Down syndrome have a right to express their happiness without censorship.

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Vogue's Paralympics ad fail

By Louise Kinross

Oh dear.

I saw a tweet yesterday about how Vogue Brazil had photoshopped an amputated arm and a prosthetic leg from two Brazilian Paralympians onto fashion models as part of an ad campaign to combat low ticket sales for the Paralympics in Rio.

This struck me as bizarre and offensive.

Can you imagine an ad for Olympic athletes that features fashion model stand-ins?

What, on earth, does being an elite athlete have to do with physical appearance? Or fashion? Nothing!

While I think the idea that any of us can have a disability is a positive one, and perhaps this was the intended effect, replacing the bodies of real athletes with models sends the wrong message.

Diversity is what makes the Paralympics stand out: we watch and celebrate elite athletes with different kinds of bodies and disabilities.  

The Paralympics is one of the few times we get to see people with disabilities in mainstream media.

What message does this ad send to the child who has an amputation? That their arm is more attractive or acceptable when photoshopped onto a different body?

Other countries have produced outstanding ads to promote their Paralympic teams. The reason they work is that they're real and give the athletes the visibility they deserve.

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'Superhumans' ad takes the fragility out of disability

By Louise Kinross

My husband loved this 'We're The Superhumans' ad about the British Paralympics team as well as everyday folks with disability. It was produced by UK broadcaster Channel 4.

I wanted to like it, I really did. But while I got caught up in the Broadway style show and the catchy "Yes I can" cover, something about the "I can do anything" lyrics, when paired with elite athletes as well as regular folks with disabilities, who just happen to be independent, didn't sit right with me. 

Most of the adults and children in the ad have amputations and they've adapted by using a different limb or a prosthesis.

This is how a story in Advertising Age described it: "Paralympians make high jumps, score goals, lift barbells and shoot arrows while everyday folks pump gas, take notes, eat cereals, fly airplanes -- just as easily as their counterparts who happen to have arms and legs would." 

Is that statement true?

Is it "as easy" to do competitive sports and everyday activities with a disability as without one? Isn't that a ludicrous over-generalization? And just how are we defining "disability?"

One of the everyday Superhumans featured is Jessica Cox, the first armless pilot who flies with her feet on the controls (she's an American, by the way).  She's able to fly the plane with her feet because her physical disability is singular -- she was born without arms. What if she also had low or high muscle tone that limited use of her feet, or chronic pain, or an intellectual disability? Would flying be so "easy" then? 

What kind of expectations does this ad set for all people with disabilities, including those with multiple disabilities? The ad suggests that disabled people can do anything AND that they can do it on their own. All of the everyday Superhumans act independently. Most have amputations, and we see how they play a guitar, steer a car, drive a plane, care for a child and pump gas with their feet. 

What about people who have conditions that affect many parts of the body and their ability to function? What about people who require help with bathing, dressing, toileting, moving in their wheelchair or communicating? What about people who require round-the-clock care? How do they fit into this "I can do anything" realm? 

They don't. That's why they don't appear in the ad.

"Being a Superhuman is a state of mind," says the ad's creative director. "It's time to stop focusing on disability and focus on superability instead." 

What? Is a physical environment designed for bipeds and not wheelchairs or walkers a "state of mind" on the part of the disabled person? Are unconscious biases against disabled children detected during implicit association testing in adults a "state of mind" in the children? What about North American health protocols (I imagine they're the same in Europe) that bar children and adults with disabilities from admission to intensive care during a pandemic? 

Disabled people have historically been stereotyped as "less than" human. This ad, pairing some of Britain's finest athletes with everyday disabled folk who are independent, suggests they are Superhuman. 

Will people with disabilities ever be allowed to just be human, in its full spectrum, which includes different degrees of interdependence and dependence over a lifetime?

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Why does this New York Times piece lead with slurs?

By Louise Kinross

This “news analysis” story in The New York Times yesterday got under my skin.

The headline Giving A Name, And Dignity, To A Disability is at odds with the lead, which stands as the first paragraph:

“IDIOT. Imbecile. Cretin. Feebleminded. Moron. Retarded.”

The piece is about the language used to describe people with intellectual disability, suggesting that each of these names was at one time considered benign: “Offensive now, but once quite acceptable,” columnist Dan Barry writes.

Really?

According to whom?

I’m quite sure the folks with intellectual disability weren’t asked at the time.

Would a similar analysis piece about another marginalized group—women, transgender people, aboriginals or other racialized communities—kick off with an unadorned list of slurs?

No. I don't think it would. I think that kind of opening would raise a red flag for writer and editor alike.

Barry writes that the name we assign to a marginalized group “speaks to a continuing sense of otherness; to perceptions of what is normal, and what is not.”

In setting this article up with such dehumanizing words, he feeds in to rigid, visceral stereotypes.

He traces the history of the medical term: that "idiots" must have been caused by human sin; that the "feebleminded" were immoral and "a threat to American stock." No matter what word was used, it became pejorative, he writes, as a way of positioning people with intellectual disability as less than human, "other."

Finally, after comments from historical and medical experts, he notes that disabled people themselves have fought back against the r-word in recent decades.

And there’s a lovely anecdote about a real person's life tucked away at the very bottom.

Barry writes about his investigation into an Iowa turkey plant that kept dozens of men with intellectual disability in servitude for decades—forcing them to rise at 3 a.m. to gut turkeys for $65 a month. The 2014 piece—which Barry has since turned into a book—is filled with the humanity of the men. That's why the framing of this new piece gave me such a jolt. It didn't sound like Barry.

At the end of the new article, Barry tells the story of one of the men he reported on since he was freed.

“Today he is the sole resident of an apartment in Arkansas,” he writes. “He is a commuter, a palette-jack operator, a pet owner, a Dr Pepper drinker, a brother, an uncle. He is many things, he says, ‘but I am not retarded.’”

Why is this first-person vignette, which gives us more than a one-dimensional view of intellectual disability, buried at the end? Did an editor flip it that way?

That anecdote could have opened readers' minds to a more flexible way of thinking about human value. Instead, readers who only skim the first few paragraphs of the article won't even see it.

Don't forget that only a few years ago it was editorial practice at The New York Times to describe people with intellectual disability as “retarded.” 

In fact, in 2013, Phil Corbett, then associate managing editor of Standards, in a back and forth correspondence with me, wrote: “While ‘imbecile,’ ‘moron’ and ‘idiot’ were all used in the past to refer to people with intellectual disabilities, I don’t think most modern readers or speakers of English make any such connection today.”

Really? 

Isn't that what continues to give the words their zing?

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A face is only part of the story

Producer and photographer Tanya Workman, right, with Charlene Guenette. Tanya interviewed and took photos of Charlene for The Difference Project.

By Louise Kinross

Tanya Workman produced a fascinating audio documentary called What happened to your face? that aired on CBC Radio’s The Doc Project on Dec. 8.

Tanya is a Toronto journalist and photographer who has a craniofacial condition called Moebius syndrome. It typically causes some facial paralysis, including “smile” muscles that don’t work and eyes that don’t move side to side. Over 10 years ago Tanya produced a photo series of children and adults with a variety of craniofacial differences called Face Value (I got to be one of them as I had recently lost my hair to the autoimmune condition alopecia! See below). 

This is how CBC described Tanya’s recent radio documentary: “On this episode of The Doc Project we hear what it's like when your story isn't told. Tanya Workman has a facial difference, something we would once label as a deformity or disfigurement. So does David Roche. But while language has evolved, have cultural attitudes and understanding? This doc is about perceptions of difference and the stories we tell about those differences.”

BLOOM: Why did you choose to do this documentary?

Tanya Workman: This piece has been living inside of me for a while. I realized that when I get stared at on the streetcar, there’s more behind it than a little girl seeing and wondering about a face that’s different: her reaction to me has an impact on the stories I tell myself about myself.

All of us carry narratives about who we are that have been shaped by the experiences and relationships we’ve had in our lives. ...That question of ‘what happened to your face?’ reminds me that others may look at me differently, and recalls other moments of being singled out. One example I share was when a classmate called me ‘Dr. Demento’ in elementary school and I felt like I'd been put in a box. When I'm asked 'What happened to your face?' it makes me self-conscious about a physical part of myself that is just one part of me.

Over time I’ve often wondered, how do I counter that? Is there a way to bring something bigger into the world to talk about how we see and tell stories about difference? 

So the idea was for my own experience to be the way into the documentary, and then to talk to people who studied this stuff and people like David, who told stories about it, and other people who had a facial or other physical difference that informed their work as artists. I wanted to explore the relationship between the face, story and the self.

BLOOM: It seems that through the documentary you’re torn between wanting to tell your story as it relates to facial difference and not wanting to tell it, or wanting to move on from it. 

Tanya Workman: Even though my facial difference is a part of who I am, I still struggle with that fact. I might not think about my facial difference for weeks or months and then someone stares at me and I wonder: ‘Okay, is there something I can say that can add to some understanding about what a difference is?’

I know photographers and writers who mine their own experience, or do work that’s personal in nature. But for me actually talking about something that is very obvious is sometimes still difficult.

I’ve found myself torn between being the journalist who tells others’ stories and being an artist who looks inside herself and creates something from her own experiences. And doing so publicly brought up conflicting emotions. 

So, yes, I want to talk about it, but I don’t want to talk about it. My story is more than the medical story or the story of being stared at, and perhaps that’s the point.

BLOOM: That makes sense. I read Robert Hoge’s memoir called Ugly, about being born with a tumour that gave him a significant facial difference. He said our face is our passport. What does our face mean in our culture?

Tanya Workman: The face is about expression and eye contact and how we communicate with people, and it is identity, too. 

David Roche in his book The Church of 80% Sincerity, talks about the face being the locus of the human persona. People see it as very symbolic. It reveals our character and personality. The face is most often seen as a barometer of beauty. 

I, too, am guilty of allowing my gaze to linger on people who have striking features. The face is that first thing we see. We all look at other people and make judgments about them, whether we intend to or not.

The Moebius syndrome face is described as being like a mask. I do have facial expression, just not as much. If the face is that place that reveals our emotions, but it lacks expression, it confuses people. I remember times when I’d just be sitting somewhere and someone would go by me and say ‘Smile, don’t look so grumpy.’ But this was just how I looked.

BLOOM: That used to happen when my son was young, too, because he has less animation in his face. So I’d be pulling him in the wagon and someone would walk by and say: 'Oh, is he angry?' That used to really bug me, because no, his face was just in a natural resting state. I used to hate when someone read a negative intention or emotion into it.

Tanya Workman: Yes, people can make assumptions about you.

BLOOM: In Robert’s memoir, he writes about if he had a choice of not having his facial difference, or not having to wear prosthetic legs, he would choose not having the facial difference, even though it’s the disability of his legs that affects him most in a daily functional way.

Tanya Workman: That’s interesting. When my CBC mentor Steve Wadhams interviewed me he asked a similar question: ‘If you had a magic pill that would take away your facial difference, would you take it?’ At the time, I answered it, but when I listened back to the tape we discussed why I thought it was an unfair question and not to the point.

What about if you could have not lost your hair? Would you prefer that?

On the surface, I might say yes, but practically I know my facial difference has made me who I am.

This is why stories, and how we see people, are so important.

BLOOM: What has been the most challenging part of having a facial difference?

Tanya Workman: That’s a hard one. It’s changed over time. When you’re a teenage girl, like all teenage girls, you’re worried about appearance and fitting in. If you’re a girl who looks a little different, you take things more personally or you think ‘they don’t like me because of this.’ When I was younger, it was just about acceptance by peers. And then as I got older, I think the hardest thing is remembering that I have a facial difference. As I said in the documentary, I grew up, I went to journalism school, I started a career and bought a house. You become who you are. But then when someone stares at me, I’m reminded that my face may leave a different first impression of who I am.

BLOOM: Initially you weren’t going to be part of the documentary in terms of sharing your story. Why did you change your mind?

Tanya Workman: The Doc Project and my mentor Steve were interested in me being a part of it. Steve asked me to go away and think about any key moments in my life—mental pictures of my experiences as a woman with a facial difference. Then I was interviewing an artist with a facial difference and that person said: ‘It sounds like you are interested in hearing my story for the purposes of telling your own story.’

I didn’t want to admit it, but when I listened back to the tape, I realized it was true. I’m very interested in how people’s embodied differences provide material for the stories they create, and that’s what initially drove me to start working on the documentary. 

Part of that comes from feeling an urge to express myself in some similar way—to do what my face can’t. My mentor had the idea that one way we could structure the piece would be to pair David’s story with my own, to do a duet. So David talks about this, and then I’ll talk about this. And together, our experiences tell a larger story.

BLOOM: In the documentary, when the little girl on the streetcar asks her mom ‘What happened to her face?’ you answer in a really compassionate, measured, positive way, to try to explain it to her. But aren’t there times when you don’t feel like educating people? When my son was younger, I went to AboutFace and we learned about how we should come up with a simple explanation and also some funny comebacks when we were in difficult social situations. I think I used to do that really well, but I’ve found, over time, that I’m more put out by the need to educate people. Obviously if someone is genuinely interested, that’s one thing. But I find so much ignorance now, when I’m out. Some people can be so rude. And sometimes I don’t feel like being the mature person who takes the high road and educates. I just don’t want to have to deal with it.

Tanya Workman: One of the people I interviewed for the doc was Eliza Chandler, a fellow in the School of Disability Studies at Ryerson. She spoke about how often difference and disability can be seen by others as a problem in need of a solution. Difference is viewed as sitting in the body, without acknowledging that it is created socially and culturally.

While our stories—and explanations—may be elicited by others, we experience them in different ways, depending on where we are and who we’re with, Eliza says. For example, she might experience her disability one way when she’s teaching a class and another when she goes to the emergency room for help. The problem of sharing only one part of a disability experience is that it collapses a whole range of experiences, emotions and relationships down to a stereotype, Eliza says. The more complicated, nuanced and diverse stories we have, the better. 

I think that’s at the heart of why I struggle with the question: ‘What happened to you?’

Two years ago I walked part of the Camino de Santiago pilgrimage route in Spain—about 225 km with a group, and another 90 or so on my own. At the end I met a woman from Slovakia. I really liked her and we got on, but over dinner she said: ‘It’s probably good that you went with a group for the first part of the trip.’ I said: ‘Oh. Why?’

She was implying that my facial difference might have made it difficult for me to connect with and be social with other pilgrims. We talked about this briefly, and I asked if she had trouble meeting my gaze—which I know people sometimes do—but I didn’t want to linger on it too much. The story of that trip was that I’d walked the Camino, not that I was worrying about what others thought of my face. It’s in those little moments you realize people are making assumptions about you.

BLOOM: In the documentary you talk about the series of photos you took of people with facial differences. And you say you were trying to capture the person, which is not their difference. How do you take a photo of a person as opposed to a photo of their difference?

Tanya Workman: When I think of a photo of a facial difference, I think of medical images, or images that focus on specific facial features or body parts. I think of sitting on a chair in a hospital photo studio and facing left, right and forward to get all the views. A clinical photo is like a police mug shot.

Taking a picture that captures a person as a whole is more about putting in the time to allow that person to feel comfortable enough that they can be at ease—with you and in front of you—to take off their mask. And yet, what I see and what you see and what the person being photographed sees may be different. It’s kind of like making a radio doc—everyone is going to hear something different. But you try your best.

BLOOM: Because you are a photographer, writer and producer, how did you decide what medium to use for your documentary?

Tanya Workman: Several years after I started the photo series Face Value, I became involved in a storytelling project created by Dr. Carla Rice from the University of Guelph—first as a participant, then as a facilitator. Called Project ReVision, it was a series of workshops where women with differences and disabilities were given the time and space over several days to make two- to three-minute videos about their experiences using their own words and images. 

What stayed with me long after my relationship with the project ended was the potential and power that a story, told through the person’s own voice, can have to connect people. That led to me to rethink my original photo series, and want to embark on a new project that was more participatory, more about self-representation, and that included audio and personal stories. But I got only so far before I had to take a break from it.

When I heard about The Doc Project, which is both a radio show and a mentorship program, I’d just finished reading a draft of a memoir by a man from Thunder Bay with a facial difference. It was the second manuscript by a person in the facial differences community I’d been asked to provide feedback on in six months (I’d also read a screenplay featuring a character with a facial difference and seen a short film about a teenaged friend with a facial difference that was made by another friend with a facial difference). It seemed to me that there was this drive in the community to share our experiences, but the reasons for doing so were layered.

BLOOM: What advice would you give to parents of a younger child who has a facial difference?

Tanya Workman: Just love your kids. Love them for who they are and as these things come up, figure out how to deal with them and what works for you. Every family is different and has its own way of doing things. I’m sure the doctors and therapists may say one thing, and people with facial differences may say another. But you have to pick what’s right for you. Most importantly, see people as more than their appearance.

The photo below of Louise Kinross was taken by Tanya Workman as part of her Face Value project over a decade ago.

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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. 

 
Jennifer 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.” 

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More than meets the eye

By Sue Robins

There’s been a tropical storm on the Hawaiian island of Kaua’i and the one-lane bridge to the North Shore is washed out. We’re renting a cottage in Hanalei and decide to venture north to Ke’e Beach. Paradise in the rain is still paradise to me.

When we get there my son Aaron, 10, refuses to go to the beach. It’s filled with debris from the storm, and the water is unsettled. I understand his thinking: what’s the point of a beach if you can’t go swimming? My husband and daughter venture ahead. I stay behind with my willful child in an empty parking lot. He’s content to pick rocks and investigate the lifeguard tower.

Two people on coaster bikes appear: a mustachioed dude in a trucker hat and a stunning young woman. We exchange hellos.

“Are you from North Dakota?” the guy asks me with a smile.

They’ve been eavesdropping on us Canadians and our flat accents. We get to chatting—about the monk seal sighting at Tunnels Beach, about the awesome burritos at Red Hot Mamas down the highway. He has a home in LA and one here, he says casually. This guy looks familiar to me, but then, he looks a lot like a local surfer guy too.

“Hi there,” he says to Aaron. “How old are you?”

Aaron has Down syndrome and can be difficult to understand, but the surfer is patient and waits for Aaron’s answer. He’s genuinely interested in my boy, and that makes him utterly charming to me. He has a son too, he says, who’s five.

The young woman, Helena, is from Melbourne. We chat about the amusing rivalry between Melbourne and Sydney. She doesn’t have a stick of makeup on and is very beautiful. But she also has a quick wit that keeps her older man in place, and an easy, lovely laugh.

The three of us exchange stories about different health systems. “I once tried to give the nurses my credit card in an emergency room in New Zealand,” he says, “They laughed at me and wouldn’t take my money.” This unassuming dude is clearly well off and well travelled, too.

“Where are you from in Canada?” he asks.

“I’m from the west, above Montana.”

 “Where in the west?”

“Edmonton.”

“I was there in January!” he exclaims.

Edmonton in January? I rib him. Nobody travels to Edmonton in January.

“I was there for work,” he says. “Vancouver, Calgary, Edmonton and Winnipeg.”

I squint at him.

And suddenly, I know who he is.

It’s Anthony Kiedis from the American band Red Hot Chili Peppers. The cities he’s listed are destinations on a Western Canadian band tour.

I take a deep breath. Do I start sputtering fan-girl accolades?

I hesitate, blink and choose to soldier on. We’re debating how to pronounce the word “herb”—those of us from the Commonwealth say “urb” and find the American pronunciation of “hurb” amusing.

My daughter Ella wanders back and Aaron insists we introduce ourselves.

“I’m Anthony Kiedis,” he says.

I knew it. It’s him.

Here we are, hanging in the Ke’e Beach parking lot: One teenage girl, a kid with Down syndrome, an exotic supermodel, a famous rock star and me—the suburban mom.

But under the swaying palm trees, we aren’t any of those things. We’re just a collection of folks gabbing by the beach.

My husband returns and Aaron is listless. It’s time to wrap up. Anthony and Helena climb back on their bikes, wave goodbye and ride away.

“Who was that guy you were talking to?” my man asks, puzzled by my exuberant, chatty behaviour, which is out of character for my introverted self.

“That was Anthony Kiedis,” I say.

My husband’s eyes pop, and he grabs the arm of the nearby lifeguard.

‘That guy was Anthony Kiedis?” he shouts.

“Yeah,” the lifeguard says. He shrugs. “He just lives up the road.”

Later, back home in Canada, I’ll hear a Red Hot Chili Peppers tune on the radio. The temperature is below zero, but I warm as I remember our lovely encounter with that dude on the beach.

I know I know for sure
That life is beautiful around the world
I know I know it's you
You say hello and then I say I do
from All Around The World

Nobody is ever just one thing, I think. Anthony didn’t dismiss me as a boring mother, and he didn’t treat my son as a disability. I chose to see him as a dude first and a rock star later.

In the disability world, we preach that people are people first. I see that this is true in the rock star world too. 

Sue Robins is a mom of three and family advisor at Sunny Hill Health Centre for Children in Vancouver. 

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What's in a name?

By Louise Kinross

It seemed a simple exercise. I was at Columbia University doing a a course for clinicians and writers on narrative medicine. In our small group, we were asked to write for five minutes on this prompt: “How did you get your name?”

Then we went around the table and read out our pieces. The stories that emerged were complex, powerful and in many cases deeply painful. Often times a person had been named in memory of a relative—but sometimes this connection was perceived as limiting, not liberating. Other times the child didn’t ‘click’ with his or her name, or family dynamics involved in the selection of the name caused discontent.

The exercise showed me how important the personal meaning of a name is and how people can interpret a word in strikingly different ways. Words matter and shape how we think about things. But sometimes the same word can evoke different or even opposing images or feelings in people.

Which brings me to the topic of how we name disability—or how we describe people with disabilities.

Back in the 1990s, when my son was born, there was a people-first movement that informed how we describe disability. The idea was that disability is a part of someone, but it doesn’t define them. So we referred to “a child with a disability” as opposed to “the disabled child.”

As parents, many of us alligned ourselves with this approach and still use it today.

But a rethinking of how disability is described is playing out on social media, where many adults with disabilities say they prefer to call themselves “disabled.”

Here’s how S.E. Smith at This Ain’t Living described it recently:

“There’s something inherently blamey, to my ears, about ‘person with disabilities,’ although I have the utmost respect for people who prefer to identify with that term (or with other person-first language, like person with autism, or person with mental illness). It sounds less like a part of someone’s identity (autistic or autistic person, mentally ill person) and more like an appendage, an externality, something sort of clumsily attached; something someone is forced to live with. It also sounds like something a person should be able to fix or overcome, rather than an accepted part of that person’s identity and reality.”

Smith notes that “person-first language is…rooted in the medical model: Something is wrong with you. You should be fixed.”

In contrast, Smith describes the “social model: You have an impairment, and society disables you.” For example, “society is built for people who are not paralyzed, thereby making it difficult for you to fully participate in society as an equal.”

The social model of disability teaches that people are marginalized by the environment, people’s attitudes and inaccessibility, rather than the disability being something that resides within them.

Some childhood disability researchers have adopted this approach. 

“‘Disabled people’—the terminology that I most often use—suggests that disability is not something a person has, but rather something experienced as a result of prejudice, discrimination and social exclusion,” says Bloorview Research Institute scientist Barbara Gibson, who is a co-author of Rethinking Rehabilitation: Theory and Practice expected out in March.

Among disability advocates there is a move to identity-first language. Lydia Brown describes this in a piece at The Autistic Self Advocacy Network.

…When people say “person with autism,” it does have an attitudinal nuance,” Brown writes. “It suggests that the person can be separated from autism, which simply isn’t true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the colour of his or her skin.

“In the autism community, many self-advocates and their allies prefer terminology such as ‘Autistic,’ ‘Autistic person,’ or ‘Autistic individual’ because we understand autism as an inherent part of an individual’s identity—the same way one refers to ‘Muslims,’ ‘African-Americans,’ ‘LGBTQ,’  ‘Chinese,’ ‘gifted,’ ‘athletic,’ or ‘Jewish.’

Emily Ladau, a disability blogger at Words I Wheel By and contributor at the Disabled Girls Talk podcast (which is a really cool dialogue between two young women) expands on this idea.

“You wouldn't go out of your way to say ‘a person who is female’ or ‘a person who is Jewish,’ because neither of these things are perceived to be negative by society in the same way as disability. When you say person with a disability, it implies you want to remove the disability from the person, as though acknowledging their disability means they are less of a person. However, disability is simply a state of being—not something that should cause shame. And in fact, my disability identity is something in which I personally find a deep sense of pride...”

I think we should respect the words that people choose to name themselves, recognizing that we need to clarify the intentions behind them. Ask people why they choose certain words—don’t just assume that you know what's intended, which is what I used to do. In the past I interpreted the phrase ‘disabled children’ to be a devaluing of a group. I had my word police antenna up, and I was quick to judge.

But after listening to adults talk about why they identify as ‘disabled,’ and researchers explain their rationale for positioning people as being ‘disabled’ by physical and attitudinal barriers, I hear the words in a new way.

Emily Ladau, in a great read on language sums it up beautifully: “Language is rarely ever a clear-cut matter.” What do you think? 

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Never alone

By David M. Perry

Minutes after my son Nico was born, as he lay on the warming table, I noticed his eye was having difficulty opening. I asked Michelle, our nurse-midwife, if there was anything wrong. 

"No, his eye is fine," she replied, "but did you have any genetic testing done?" 

“No,” I said. This was true, not because of any philosophical plan, but because for various reasons we didn't know my wife Shannon was pregnant until we had moved past a lot of the test dates. The ultrasounds showed no troubles, anyway.  

Well,” she said, “he’s showing characteristics typical of Down syndrome.” 

My mind reeled, racing through images of people with Down syndrome. The word “retarded” flashed by. I immediately started imagining our life and wondered, “Does that mean we’re going to have to put him in an institution?” Later, my wife told me that her first thought on hearing the news was concern about his life expectancy. 

This was the moment, the birth of our first child, that should have been filled with elation. We had planned for it, dreamed of it, waited for it. But the words “Down syndrome” were so powerful and so negative that our minds turned instantly to institutionalization and death.

“What does that mean?” I asked Michelle. 

Michelle answered my question in the best possible way. She said that there was a big range of possibility, some risk factors, and also the strong likelihood of significant delays. I did not process this answer, not really.

“Should I tell Shannon?” I asked? Yes, Michelle said, I could.

Through classes and talking to doctors, Shannon and I both knew how things were supposed to go. After the baby is born, they clean him and wrap him and weigh him and make sure there’s no danger, then they give him to his mother. There are so many pictures and images of that perfect smiling moment: exhausted, the new parent and new person cling to each other. The baby, having taken his first breath, issues his first wail, a protest at having been extricated from the perfect home that is the womb. Nico was silent. Nico was not being placed on Shannon, and she sensed something was wrong. 

“Where is my baby?” Shannon cried. “Is he ok?” I mumbled something. “Is he ok?” she repeated. “He’s fine,” I said, “But Michelle thinks he has Down syndrome.” The words tumbled out of my mouth in a painful rush.

It was the first time that I said that my son has Down syndrome. I’ve said it so many thousands of times since, the meaning shifting as my understanding changed, from something that seemed so terrible to just a complicating fact, a fact intricately linked to the identity of my wonderful son. 

We have a picture of that moment, a moment when we first held our baby. I’m not sharing it. We do not look happy. But sometimes, I look at it, thinking back to those moments in order to see how far we’ve come.

The next few hours were not easy. We got to hold him, for what seemed like seconds, before they whisked him off to the special nursery. There was a phone call to my parents. There was a locked post on livejournal explaining our situation, to which I didn't permit comments. There were tears and anger and stages of grief. 

And then two things happened. First, I got to spend time with my son. He was covered with wires and tubes, but he was real, tangible. There was work to do. Here was a child who needed care. The presence of my son booted me from abstract to real. 

Then our community of friends and family, who had spent the hours since my late-night post learning about Down syndrome, kicked into gear. In those first bitter hours, among the more trivial of my dark thoughts was that the man we had asked to be Nico’s godfather wouldn’t want to be involved with Down syndrome. Perhaps I should let him off the hook, I thought. I felt ashamed of my son, of myself, of my thoughts. I wanted to hide. But our friends, including Nico’s godfather, were up to the task.

When they talked to me on the phone, when they came to see us, they said what you would say to any new parent: “Congratulations!” 

“Stop it,” I wanted to shout, “there’s nothing to congratulate us about! This is a tragedy. Lives are ruined.” 

But they were wiser, and stubborn, and just kept congratulating us. They came to visit laden with flowers and champagne and chocolate cake and presents. They showered us all with love. They told us our baby was beautiful and cooed over him. Together, my son and my friends carried me out of the first shock of grief. They shifted my perception so that I didn't see just a bundle of symptoms and potential problems, didn't just see a diagnosis, but instead saw my wonderful boy.  

By the end of the second day, Nicholas successfully latched onto his mother’s breast and nursed. We’d been told he probably wouldn't be able to nurse, that his jaw would be too weak, that he might need a direct tube in his stomach, or to be fed via a tube inserted down his nose, and all sorts of other things. But he nursed. And for the next four days, we’d be back in his room every three hours, providing a kind of rhythm to a life that so quickly became our normality. 

We transitioned from mourning to the joys of parenting thanks to the presence of a real boy for whom we could care and love, while being surrounded by a community that rallied around us so marvelously and so stubbornly. I’m still grateful, because those joys are immense.

But when I think back to that moment when my son was born and I heard the words “Down syndrome,” there was only grief. Fear. Ignorance. I was incapable of rational thought.  

Imagine being given that news over the phone in week 16 of a pregnancy. 

In the prenatal context, there’s no child to care for, to love, to nurture, and to see as something real. There’s no child around which the community can gather, praise, tickle, focus on. There’s just this diagnosis and a shape on an ultrasound machine. That shame we initially felt in the hospital, the desire to hide, was only countered by our friends showing up at the hospital with their powerful words and love.  

Absent powerful support structures—spouses, family, friends, faith, whatever it takes—how is someone supposed to get through that?

This is why community, correct information, and representation matter so much. It’s why we need to change the meaning of "Down syndrome" from something that's filled with fear and grief to something filled with the possibility of joy.

Sometimes people ask me what we would have done with a prenatal diagnosis of Down syndrome. I tell them that I can't answer that question. There’s no way for me to put my mind back into the state of ignorant abstraction prior to meeting Nico. Statistics suggest that I might have advocated for an abortion. Then again, we would have been alone, without community, without concrete knowledge of what life with Down syndrome is really like, good and bad. 

That's the goal of the work of so many writers, organizers, and activists—to let people know that we aren't alone, that the birth of a child with Down syndrome may come with a long list of worries, but also deserves congratulations, and can lead to a laughing boy sliding down a waterslide into the waiting arms of his sister (or whatever your life may bring). 

There are no guarantees in life, no matter how many chromosomes you have. We'll have many more obstacles to face. Some will make us weep, surely. And yet, we won't be alone. 

David M. Perry is a professor of history at Dominican University who writes about disability and related topics on his blog How Did We Get Into This Mess? His essays have appeared on CNN, The Atlantic, and The Nation. Follow him on Twitter @Lollardfish.

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What's in a word? Stigma

The other night I found Ben in bed, his face behind a book that was jiggling about because he was laughing so hard.

The book was The Tale of Benjamin Bunny by Beatrix Potter.

It's a tiny hardcover book my dad read to me as a child. My dad was a wonderful storyteller and hearing him read was like listening to music. On the floor beside the bed was The Tale of Peter Rabbit.

Ben has always loved the antics that Beatrix Potter's animals get up to. He wouldn't let me see what page he was on, but I figured it was something about Benjamin and Peter getting into trouble in Mr. McGregor's vegetable garden.

After he went to sleep I flipped through the book and came to this illustration of old Mr. Bunny (Benjamin's father) lunging at the cat who's been sitting, for five hours, on a basket under which Peter and Benjamin quiver.

Old Mr. Bunny had no opinion whatever of cats. He took a tremendous jump off the top of the wall on to the top of the cat, then cuffed it off the basket, and kicked it into the green-house, scratching off a handful of fur. The cat was too much surprised to scratch back. 

That was probably the page I thought.

Ben has always loved the absurd, the over-the-top, the darkly humorous.

When I saw him that night, I couldn't imagine anyone more happy or caught up enjoying a moment.

And who am I to question that his way of life is any less valuable because of his IQ, I thought, because he's not thinking what average 18-year-olds do.

Today is the fifth year of Spread the Word to End the Word, the campaign by Special Olympics to get people to stop using the word "retard" because it's a demeaning slur against people with intellectual disabilities.

I'm tired and not a little disheartened with the arguments put forward, often by the brain elite, that when words like retard, imbecile and moron are used, the speaker doesn't have a person with intellectual disability in mind.

Come on.

Everyone knows that these words have a particular zing because they were once descriptors for people with intellectual disabilities. As the most stigmatized, hated and feared group on earth, calling someone a retard, imbecile or moron is the ultimate put-down.

I remember being asked to fill out a survey at a large children's hospital about prenatal testing. The survey was being conducted by students who were training to be genetics counsellors.

One of the questions asked whether, as a parent, I would terminate a pregnancy because the child had mental retardation and would have no quality of life.

The question was problematic because of its simplistic construction, equating low IQ with a wasteland worse than death.

High IQ is not correlated with a good and satisfying life, and neither can low IQ be assumed to suck the richness out of life.

So next time you're looking for a word to heap ridicule on someone—stop... and think—and leave people like my son alone.

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