How does having a disabled neighbour 'dash your dreams?'

Families protest the Weyburn, Sask. decision to keep a small group home out. This photo is from CBC News

By Louise Kinross

I’m embarrassed.

This isn’t the Canada I know and love. But apparently, according to two recent news stories, it is.

Last night I read about how the city council of Weyburn, Sask. rejected a home for four adults with disabilities in a new subdivision called The Creeks.

Four people!

According to this Toronto Star story, there was “tremendous pushback” from residents who’d bought expensive homes in the neighbourhood. “It kind of dashes the dreams and hopes of the people that live there currently,” said Coun. Brad Wheeler at a council meeting on Monday.

Just how, exactly, does having a person with a disability living on your street dash your dreams?

Oddly, the Star story includes a photo of the Weyburn sign welcoming people to what it calls “the opportunity city”—just not for the people waiting for the small group home that was tossed.

The developer of The Creeks supports the home.

This story played out as Ryerson disability scholars spoke to CBC Radio about a Nova Scotia human rights inquiry that found the government discriminated against three people with intellectual disabilities by locking them away in hospital psychiatric wards, for no medical reason, for years. When the complaint was launched in 2014 they were still living in hospitals.

“The conditions of their life were described as soul-destroying,” said Esther Ignagni, an associate professor in Ryerson’s disability studies program. For example, one person was locked in a room with a television for 23 hours a day.

The Nova Scotia applicants argued that the province should have provided them with the supports to live in the kind of small group home that Weyburn, Sask. residents just snubbed.

However, Walter Thompson, chairman of the Nova Scotia inquiry board, rejected the argument that timely placement in a small group home is a human right.

According to the CBC radio interview, there are 1,500 other disabled Nova Scotians waiting for such a home.

He also rejected the idea that ableism was behind the lack of community options.

Ableism is the “idea that disabled people are not valuable or vital parts of our society and it’s permissible to send disabled people away and …lock them up,” said Eliza Chandler, also an assistant professor in Ryerson's disability studies program.

Doesn’t the first half of that description perfectly mirror the attitudes and actions we see in Weyburn, Sask.? 

“These people have invested a lot of money into their dream homes, their retirement homes and to have the provincial government come in and pick a lot directly across from them, I don’t think that was the best choice,” Wheeler was quoted saying.

Chandler was asked what a world without ableism would look like. It would be “accessible and inclusive of disabled people and would value us as citizens and want us in your cities, in your town and as your neighbours,” she said.

Meanwhile, here in Ontario we're told the wait for a group home placement for adults with intellectual disabilities is over 20 years. I have been told, by a person at the end of the Developmental Services Ontario line, that it doesn't happen until someone in an existing home dies. 

I think Canadian kids need a new word on their spelling tests: ableism.

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My daughter is not an animal at the zoo

By Christina Herbers

We saw pandas! We saw lemurs! We saw bears and zebras and hippos.

We were just a family visiting the zoo.

And then we heard it: “Mom, I don’t like her face.” And, “Dad, what is that face?” And we saw you shooing your kids away from us, as if we were somehow contagious. And oh, the staring!

Yep, this still happens to us. In fact, it happened on our summer family trip to the Calgary zoo.

On a brighter note, there was an older man who came up to my husband and shook his hand. He told him that the umbrella that we use to shade my daughter Jaina’s eyes from the sun had shifted, and that her eyes were in the sun. To him, I say thank you. Thank you for not being afraid of us. Thank you for seeing us. Thank you for holding a door open for us. Thank you for teaching your kids and grandkids that it’s okay to talk to us! 

Questions are a natural part of human behaviour. So maybe it’s not your children's questions that are the problem, but that you don't want to hear the answers?

How can your child know the answer to “what is that face?” if you don't ask me? If you ask, I will tell you about the car accident we were in when I was pregnant with Jaina. She isn't able to move her face that well because of her brain injury. She isn't able to smile. She isn't able to close her mouth. She suffered from a brain injury before she was born.

She has always been this way. 

She is also mellow and calm and quiet.

Talking about why my daughter is different from the rest of us may be natural for your kids, but please know that we hear you. Respect us.

Teach your kids that we are all different. Different colours, sizes, genders, sexual orientations, ages, beliefs and abilities. Teach your kids that it’s okay to be different. I can’t think of any two people who are exactly the same. Can you? Even the pairs of identical twins that I know who look the same have their own individual personalities.

Please don’t treat my daughter like a caged animal at the zoo. Don’t stare and comment and point and judge. Talk to us. Ask your questions, and take the time to listen to our answers.

Let’s work on seeing each other for who we really are. Because in the end, aren’t we all just people, trying to make it through this journey called life?

Share your thoughts below. I’d love to hear from you!

Did you like this story? Sign up to receive our monthly BLOOM e-letter in your inbox. It includes our latest stories on families raising children with disabilities and the work of clinicians and researchers at Holland Bloorview and beyond. Plus links to mainstream disability news, new books, and shout-outs to people and groups making the world more accessible.

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'Being a black male is...a safety issue over and above autism'

By Louise Kinross

Many of you know Amy Ma, who is chair of the family advisory council at Montreal Children’s Hospital.

Recently, Amy told me she'd heard a parent speak at a Black History Month event about her fears for her sons, who are black and have autism, and the racism and ableism they will face.

That parent is Sazini Nzula, and she lives in Montreal. Sazini has a PhD in medical microbiology and worked for years as a scientist. Sazini has two sons—Ethan, 11, and Jayden, 7. After Ethan was diagnosed with autism, Sazini trained in Qigong Sensory Treatment, a type of evidence-based massage that helps reduce sensory issues in children with autism. “At the time, we had to wait two years to get an autism diagnosis in Montreal, and another two years to get government help,” Sazini says. “This was a method that parents could use by themselves while they waited.” While teaching parents, Sazini was inundated with questions about other aspects of parenting children with autism. She now provides personal coaching to parents. Her book Beautiful Inside and Out: What You Ought to Know about Autism was just released. We spoke about Sazini's experiences with stigma related to race and disability.

BLOOM: Can you describe how Ethan and Jayden are affected by autism?

Sazini Nzula: Ethan still has language delays and only really began speaking when he was about nine. Before that he could say words, but now he actually talks. He has huge sensory challenges, which are better than before, and trouble with self-regulation. He has issues with behaviour and last year at school was horrible for him. This year is going well.

Jayden has challenges focusing and staying on task. He sometimes needs to wear noise-reducing headphones. Jayden also struggles with social interaction.

BLOOM: What has your experience been with stigma related to disability and race?

Sazini Nzula: There’s stigma from the black community, and then there’s stigma in general.

BLOOM: How are they different?

Sazini Nzula: In the black community it’s about having an invisible disability to do with the mind. I’m African, and it doesn’t matter how educated people are, there's still a tie to traditional African beliefs about witchcraft, because it’s scary and they can’t see it, so they don’t understand it. When it’s a physical disability that you can see, they can process that better. But if the mind is different in some way, it must be because of an evil omen.

BLOOM: I’m recalling now a story we did with a Nigerian mother who explained that disability is viewed as a taboo there, as something evil that brings shame on a family and is caused by the parents. Do you find that even when Africans have been Westernized, that some of these traditional beliefs are still deeply embedded?

Sazini Nzula: Absolutely. When Ethan was two I met a man who was educated in the medical field, and he told me he hadn’t told his brother that his child had autism, and the child was nine. I did some research and learned that in Nigeria and Kenya, surveys of doctors, special education teachers and social workers found these traditional beliefs about disability are still there. The stigma of disability is also a huge problem in Japan and South Korea.

BLOOM: I remember a parent here who explained that when her child was born with disability, for the first year, they were unable to tell anyone in her husband’s family, because of how disability was perceived in his community. So they had to make intricate excuses to prevent that side of the family from meeting the baby in person.

Sazini Nzula: In the part of Montreal that I live in, there aren’t that many black people. I remember meeting a Haitian social worker at a cultural event, and she told me that families were happy to speak with her about their children with autism, but they didn’t want other families in the community to know. So they wouldn’t come to events for families.

BLOOM: How do you deal with the stigma of disability in the black community?

Sazini Nzula: I chose not to let it affect me. I chose to tell everyone that my children have autism. I don’t have to hide it and there’s nothing to be ashamed of, in the same way that I wouldn’t be ashamed if my sons had diabetes.

What impacts me is stigma in the general community. For example, one time we were in a supermarket and my older son got separated from us. He can’t speak French and we live in a francophone province, so he pushed past someone to come and join me, and this woman went on and on about how he’d been badly raised, and how in this country we teach our kids manners. But my kids were born here. Had my son been a white kid, she probably would have said something similar but not ‘in this country.’

As my son gets older and taller, I started to be afraid of being outside. When I was at the Black History Month event, I talked about how we came home one night at 5:30, and it was getting dark. My son was having a hard time and he was running down our street. He ran past the two neighbours I know very well, who understand his issues.

My first thought was what if someone calls the police, and says ‘there’s this black kid in the dark running down the street.’ We have a police station within walking distance. I thought if the police got to him before me, there was a chance that things would not have gone well. Being a black male is definitely a safety issue over and above having autism.

BLOOM: We’ve certainly seen stories of autistic youth or adults who are assumed by police to be doing something illegal, because they won’t comply with what the police ask, or they have certain behaviours, or they aren’t able to explain their situation.

Sazini Nzula: That happens everywhere, whatever the race of the person. What I see as an extra factor is my black child who looks out of place in our neighbourhood. He might not be able to comply with the police commands, or, because the police speak in French, he might not understand. Even if he is spoken to in English, he might not be able to process it. Now that’s my big fear.

BLOOM: I understand you have tried to develop a relationship with the police?

Sazini Nzula: I’ve been taking my kids to the local police station since my son was four. My idea was to get my kids used to seeing the police as their friends, and to develop a relationship with the community relations officer, so that if anything happened in our neighbourhood, they would be the first to respond.

I called and explained I had a kid with autism and was wondering if I could drop by. I said I was teaching my son that police are safe people they can approach. Our experiences were good. What I’d love to do in future is go and do an actual presentation.

BLOOM: What advice would you give other parents raising black children with autism?

Sazini Nzula: My biggest fear is involvement with the law. We have to develop an understanding with law enforcement to make sure our kids don’t get hurt and make sure our kids are understood.

I have a nephew who is able-bodied and well functioning, and I’ve seen situations where he’s not treated well by police, and he’s done nothing. When I put the disability on top of being a tall, strapping, black male, we really have to be aware and be vigilant and empower our kids.

BLOOM: Do you talk to your sons about racism?

Sazini Nzula: With my older son, he’s not at a level of social awareness where he would notice if it happened. So for now I tell him if he feels he’s in trouble or not safe, to call mommy or to call the police. We’ve talked about calling 911 in an emergency, and my kids are good with numbers and use their cell phones.

In Grade 1, a student told my younger son ‘brown people are dirty and stupid.’ So I did talk to him about race. In his school, which is a public school, there aren’t that many people who aren’t white.

BLOOM: I loved one of your blogs where you talked about having a jar that you regularly drop memories of awesome things your kids do into. Can you explain?

Sazini Nzula: It’s a way to focus on the good things. Last year, when I think of my older son’s school year, I remember all of the calls from the psychologist, all of the meetings, and all of the really negative stuff. Plenty of awesome things happened, but I can’t tell you specifically what happened at school.

I thought this year I’m going to make sure I remember. Yesterday, we went to see the movie Peter Rabbit. For us, that was the first time we saw a movie that’s not adapted. It was for anyone, and there were lots of kids, and the sound wasn’t reduced. My son sat through, even though he forgot his headphones. That was awesome for us.

So I write the date on a sticky paper and write something that stands out, and drop it in the jar. I think it will make me even more aware of when awesome things happen. I’m capturing them, and I appreciate them more.

My plan is that if we go through a really challenging time during the year, I will pull them out to read and remember all of their victories. And certainly at the end of the year, we will read them to remember what happened.

BLOOM: You just released a book. What's it about?

Sazini Nzula: It’s to acknowledge that it’s difficult, but that as parents we need to embrace the uniqueness that our kids bring to the table. One of the subtitles is: ‘How to embrace the unique way your child is flourishing.’ So the message is that you need to go with your child, whoever they are, and still live your dream.

BLOOM: Is the book only relevant to parents of children with autism?

Sazini Nzula: No, it’s useful for parents of children with other disabilities. There’s a practical chapter, for example, on preparing your kids for adult life, and preparing yourself, the parent, with financial and estate planning.

BLOOM: Do you talk about race in the book?

Sazini Nzula: I do talk about the stigma of autism or disability, but not in the way of race. I have a chapter called ‘Life in An Autism-Unaware World.’ I had originally written about race, but the editors suggested I make it more relevant to everyone and I took it out. I plan to publish those sections on my blog instead.

BLOOM: I think there would be a real appetite for your writing in that area. I know I’d be interested!

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Reporting on Illinois group home abuse wins award

Barbara Chyette holds a photo of her brother Lauren Braun, who choked to death on a hamburger on a supervised group home outing in 2014. He had no teeth and was unable to eat regular food unless it was cut into tiny pieces. Photo by John J. Kim/Chicago Tribune

By Louise Kinross

'Suffering in Secret,' a Chicago Tribune investigation into the abuse and neglect of disabled adults in 3,000 state-licensed group homes in Illinois, won first prize in the 2017 Katherine Schneider Journalism Award for Excellence in Reporting on Disability.

The international contest, by the National Center on Disability and Journalism at Arizona State University, is dedicated to recognizing excellence in covering disability issues.

Tribune reporters Michael J. Berens and Patricia Callahan identified over 1,300 cases of documented harm since 2011 in Illinois group homes, or their day programs, for adults with intellectual and developmental disabilities.

At least 42 deaths were linked to abuse or neglect. People who were only able to eat food that was pureed or cut into tiny pieces choked to death on regular food—including a hamburger and a marshmallow. Others died from untreated bed sores and undiagnosed illnesses. One resident, accused of stealing cookies, was beaten to death by a caregiver.

Berens and Callahan found a wide range of mistreatment: residents were mocked and intentionally provoked, bound with duct tape, barricaded in rooms, left in soiled clothing and denied food. They also looked at resident-on-resident assaults, in particular in homes where people with severe physical disabilities were mixed with those with histories of violence. 

Illinois officials told the reporters that the addresses of the 3,000 group homes, which house up to eight residents each, are secret, as are records of abuse or neglect causing death. The reporters filed more than 100 public records requests, but state files were so heavily redacted and unreliable they had to dig up information elsewhere.

Caregivers, often unlicensed and untrained, earn an average of US$9.35 an hour, the investigation noted. Ironically, the reporters found the state saves US$135,000 a year when it places a person in a group home, instead of an institution. 

Illinois' group homes are not bound by staffing standards and other rules regulating nursing homes.

Berens and Callahan are to be commended for shining a light on the personal stories of the victims and their families.

They talk about their work in this fascinating panel. 

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When getting out is twice as hard

By Sara Pot

I hate surprises. On my 13th birthday, my mom invited five friends over to surprise me. As soon as I saw them, I said, “Seriously?! What am I going to do with you guys?”

Given my aversion to the unexpected, raising two girls who are medically fragile hasn't been easy. Two of our four daughters—Rachel, 10, and Janneke, 8—use wheelchairs and are tube-fed 24 hours a day.

Taking Rachel and Janneke out requires tremendous effort. Sometimes that effort, and the fear of obstacles we'll run into, makes me want to hunker down at home.

Depending on the weather, it can take 20 to 40 minutes just to get Rachel and Janneke to the van. This includes transferring them from their beds to their chairs, securing them, and adding any necessary coats or blankets. The feed pumps are then included and hooked up to the girls, as they are on continuous feeds. 

We wheel them from the bedroom to the front door or porch, depending on the weather. We use the porch lift to bring them down to ground level. From there, we wheel them to the van and begin loading. This includes opening and lowering the van lift, securing one child at a time on the lift, raising them into the van and securing the chairs with tie-downs. 

We're incredibly thankful for the mechanism of the lifts, but we're reminded of Dr. Nefario in Despicable Me when he makes his slow, triumphant exit on his scooter after receiving his 22-fart gun salute. The lifts aren't cognizant of when we are in a hurry!

Last year I read a post on Bill Peace’s Bad Cripple blog encouraging disabled people to use public transit and be visible in the community. Bill talks about how hard he and others fought for accessibility on buses. Yet he’s surprised at how few people with disabilities he sees on his daily bus route.

“If we are not present, ableists will do what ableists are good at—undermining disability rights,” he writes. “I know as winter sets in I am going to be in a battle with the city of Syracuse. I need to get to the bus stop. Snow removal is substandard. Curb cuts will likely be inundated with snow and ice. Bus stops will be blocked by cars and snow piles. I will be out there rain or shine. Where will my fellow cripples be? I hope to see you. I am lonely.”

Getting out in a wheelchair and relying on public transit and strangers for help isn’t easy. My cousin is a university student who uses an electric wheelchair. She’s been interviewed about her Greyhound "trip from hell," when the bus wheelchair lift didn’t work, and the driver didn’t know how to properly secure her chair. Her wheelchair lurched forward, wedging her feet in the seat in front, and she eventually had to be rescued by firefighters.

Because of the generous gift of an accessible van, my girls are not left with public transit as the only possibility to move around. But even with the van, I have to push myself to venture out.

Bill’s challenge to his readers is simple: If we don’t go out and take that risk, others won’t become familiar with our needs and see the importance of advocating for an accessible province.

Last summer, I tried to take Bill’s advice and plan more outings for my girls.

Yes, I was exhausted, but, surprisingly, it was good. Yes, I noted many curious stares, but it was good to start conversations with people I wouldn’t otherwise engage with. Yes, I had to research and find accessible places for two kids in wheelchairs, but the payoff in using our new city “beach carpet” meant my kids wheeled right down to the water’s edge for the first time. 

The biggest hurdle in wanting to travel and visit is the lack of proper change tables. The back bench of the car or van has worked, but I (and my back) certainly appreciate the washrooms with adult change tables and ceiling lifts. We recently purchased a small table to store in the van as another possibility for changing on the go. 

It is imperative I preserve their dignity and privacy; the girls aren't infants that I can simply change on the edge of a bathroom counter. More often than not, I've had to change plans, cut short our day, or reroute our way due to inadequate changing spaces or no spaces. Inclusive accessible bathroom space is critical and essential for everyone. 

I hate hearing about inconsiderate folks that disregard accessible parking spots. But I am determined to give more weight and worth to the few helping hands that unexpectedly show up to open doors and free up parking spaces for us.

It is often the unlikeliest of types who surprise us with their offers to help. Not too long ago, we tried eating out as a family at Swiss Chalet. We parked in a spot that was marked with a wheelchair sign. It looked like it had once been two ordinary parking spots, but was recently changed to one large accessible spot.

We parked the van, thankful for the extra space to bring down the side lift for our wheelchairs. After our meal, I left with the girls, while my husband Ralph paid the bill. I stepped outside only to find that someone had parked their car right next to our van, thinking the space was just enough for another vehicle to squeeze in.

My frustration began to simmer, as I thought about waiting for Ralph to come and help, or returning to the restaurant to find him. In order to release the lift, I’d have to move the van out of the parking spot in an already crowded lot.

Suddenly, I heard a gruff voice. “Do you need some help?” A man got out of his parked pickup. As he stood next to me, another man rolled down the window of his small car. It was parked in a spot that had extra space next to it. “You can have my spot,” he said. I glanced at the sign above. It was marked “For Expectant Mothers.” 

The helpful (pregnant?) stranger pulled out of his spot. Then the gruff man stepped into the now open space and crossed his arms, as if to protect the parking spot until I could back out of my tight spot and drive over.

More than once, I have received help from someone who I wouldn’t think to ask. More than once, I have been on the receiving end of someone’s compassion that first appeared rude, crass, or unpolished.

These are the kind of surprises I love. They cut through my own stereotypes and push me to tolerance and acceptance. The more I venture out with the girls, the more I realize that maybe I can learn to embrace surprises—to work through the frustration of unexpected challenges and see that, with a bit of grace and patience, sometimes things change for the better.

Photo immediately below by Elma Regnerus. It includes all of the Pot girls—Sophia, Emily, Rachel and Janneke. You can follow their adventures at The Pot Family.

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'It's not just for Joey, it's for a better world'

By Louise Kinross

British director Stephen Unwin is set to direct his new play All Our Children—about a German clinic in 1941 that sends disabled children to their death as part of the Nazis' killing program. BLOOM interviewed Stephen in 2013 about his role directing Peter Nichols’ A Day in the Death of Joe Egg, a 1967 comedy about parenting a child with profound disabilities. Both plays strike close to home because Stephen’s son Joey, 20, has intractable epilepsy, severe learning disabilities and no speech. All Our Children will run April 26 to June 3 at the Jermyn St. Theatre in London. Stephen recently became chair of KIDS, a British charity that provides services to young people with disabilities from birth to age 25. BLOOM spoke to Stephen about All Our Children.

BLOOM: Why did you decide to write this play?

Stephen Unwin: My mom is German Jewish. She was born Jewish in Nazi Germany and came to Britain at age three. So at the back of my mind the Holocaust was always something in the environment. I read a huge number of books about that period and how that catastrophe happened. I was brought up Catholic in Britain, and although I’m an atheist who believes in science, I do have some respect for what the best of the religion Catholicism does when it tries to help the vulnerable. I was reading a book about the Third Reich and I came across something about a bishop who had opposed the murder of the disabled. It struck a chord in me. I thought this is so interesting because it brought together my German Jewish background, my Catholic background and the issues I face with my son Joey.

BLOOM: What is the play about?

Stephen Unwin: It’s set in a pediatric clinic for disabled children in 1941. Before the Nazis, the clinic tried to house and help the profoundly disabled. With the implementation of the eugenics program,  a number of the kids were taken each week by bus to Hadamar, one of the killing centres.

The clinic is run by a pediatrician in his 50s who’s dealing with a world gone completely mad. He thinks he’s a doctor not a murderer. He has a maid who’s a Catholic with three children. She doesn’t know the clinic children are being murdered, but she’s glad her kids are ‘normal.’ 

There’s a Nazi administrator who’s 22, who views disabled people as disgusting, and the mother of one of the disabled children. The mother turns up in Act 1 to thank the doctor for looking after her child so well, and then in Act 2 comes back with a letter saying her child has died. She’s the emotional punch of the play. She’s feeling her way to realizing what's happening.

The other character was a real person, the Catholic Bishop of Münster, Clemens August Graf von Galen. He belonged to one of the oldest aristocratic families in Germany. He was one of the real heroes in the battle for the rights of the disabled. He impressively comes up with sermons in which he says ‘You cannot kill the most vulnerable. These people are our brothers and sisters.’ 

At the end, the mother discovers what's happening and she says ‘They are all our children, there’s nothing special, they’re just children,’ which is what I think. We have to move beyond the normal and abnormal characterization. And what I really feel is that the religious come up with an answer of sorts, and those of us who aren’t religious need to find our own version of that answer. This is a philosophical play talking about how do we secure our moral foundations?

The main defense of the Nazis was ‘these people are too expensive.’ I sometimes find myself talking to myself about Joey, and yes, he’s really expensive, and will never earn any money or pay tax, but that’s, I guess, why you and I pay tax. So that when people have a disability like Joey, or develop dementia or lung cancer, we have a responsibility to these people with extreme vulnerability.

The play is quite particular, in that it’s got a bit of atmosphere about that terrible, dark place, but I actually hope and want it to speak to now. Not to say that disabled kids are being treated like that, they’re not. It’s a different set of issues, but some of the thinking is parallel. I actually touch on the philosopher Peter Singer’s writing, his idea that my dog has as many abilities as one of your profoundly disabled children, so why do we give the child rights when we don’t give the dog rights? And some of the Nazi thinking resonates with what we’re hearing today in the U.K. about disabled people being scroungers, that they’re not really disabled.

BLOOM: What is it like to be recreating a time when your own child would have been killed because of his disability?

Stephen Unwin: People who know Joey will recognize some of Joey in the child, Stephan, in the play. I wanted to bring a kind of reality to it. There’s a moment when the doctor signs off on 30 kids being taken away to be killed, and he looks at each piece of paper with a photograph and says ‘yes,’ tick, tick, tick, and then ‘no, he’s not ready yet.’ I want an audience to remember and feel that this is an individual, not a category, and to do that I need to think about my son Joey in that situation.

The Nazis used to talk about how these were mercy killings, and that anyway, the child wouldn’t know what was happening. It’s a terrible truth to say this, but if Joey was put into one of those buses and taken off he wouldn’t know what was happening, and he wouldn’t even be scared, because he likes buses. That’s the truth, and we have to bear witness to this extreme vulnerability and we absolutely have a responsibility to these people.

I got fed up with the narrative in disability, and in disability dramas like The Curious Incident of the Dog in the Night-Time, of ‘don’t worry, these people are mathematical geniuses.’ That narrative of consolation has dangers, and is as dangerous as a narrative of catastrophe. These are real people. Joey isn’t a metaphor. The disabled were taken as a metaphor for everything Germany hated – weakness, vulnerability and ‘ugliness’—and it has to be done away with.

I’ll probably cry a lot in rehearsals, but I’ve been working in the theatre for 35 years, so it’s not like someone doing it for the first time.

BLOOM: I know that sometimes I find it emotionally exhausting to write about some of the popular thinking about disability. I just wrote a piece about Peter Singer’s latest writing.

Stephen Unwin: It is emotionally exhausting. But the way my brain works, it’s part of clarifying what I think. I’m trying to understand what the issues are, trying to work it all out. And working it carefully out is weirdly, for me, part of recognizing and accepting and acknowledging the challenges. I live a life full of books and words and ideas, and then there’s Joey, who isn’t books and words and ideas. And I want to find a way of bringing those two things together. I think it’s our duty. I feel Joey needs a spokesman and in all the complicated ways I exist, I feel a real duty to be his spokesman. And it’s not just for Joey, it’s for the other kids like Joey. Some of those kids have parents who don’t have English as a first language. It’s not just for Joey, it’s for a better world.

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I'm not okay with disability hate being confused with science

By Louise Kinross

I didn't want to write about this. But I couldn’t let these comments (scroll to the bottom of this page for the full passage) about people with Down syndrome in an academic journal produced at Oxford go unchallenged.

We’re all familiar with Peter Singer, the philosopher at Princeton University who believes human value is earned by what you do intellectually and physically—not inherent.

In 2009, Singer wrote a piece in The New York Times Magazine suggesting that rationing health care based on disability is just. In it, he asked how “most people” would rate life with quadriplegia, to life without? Of course these “most people” would have no firsthand experience with paralysis (personally or in their family), only common cultural stigmas to draw on.

Would the average person have a hard time deciding whether they’re prefer five years of able-bodied life or 10 years with paralysis? If so, he says, what they’re really saying is that life with quadriplegia is half as good as non-disabled life. “If that judgment represents a rough average across the population, we might conclude that restoring to nondisabled life two people who would otherwise be quadriplegics is equivalent in value to saving the life of one person, provided the life expectancies of all involved are similar.”

It doesn’t matter what science tells us about the lived experience of people with quadriplegia and other disabilities. According to Singer, it only matters how the masses “imagine” it to be.

In fact, people who have no control of their body and can’t speak are using computer brain interfaces to tell scientists they are generally happy with their lives. Last month, BLOOM asked neuroscientist Niels Birbaumer, lead investigator of such a groundbreaking study, if the results suggest that assumptions that non-disabled people make about life with severe disability being “not worth living” were wrong. “Yes,” he wrote back. “They are utterly wrong. Many papers prove this.”

Harvard psychologist Daniel Gilbert helps explain the paradox in Stumbling on Happiness by describing common blind spots in how we imagine things. These include a lack of empathy that would allow us to imagine an experience different than our own, and a tendency to overestimate the negative impact of an event and underestimate our resilience. This explains a study that showed sighted people will pay more to avoid going blind than blind people will pay to regain their sight. It also explains why “most people,” like Singer, assume they couldn’t be paralyzed and happy, even though research shows the opposite.

Last November, in a CBC interview that included his views on infant euthanasia, Singer said that parents should not be “stuck with having to look after a really severely disabled child.” He said that a child with severe disability can rob parents and siblings of happiness, and that a future child from the same parents might have a better life. ”It's a question of one life or a different life,” he said. But he doesn't talk about the actual research on families raising children with disabilities and their siblings, the real challenges and rewards. Why let science muddy the waters?

Which brings us to Twenty Questions. In this piece in the December issue of The Journal of Practical Ethics, Singer answers questions posed by the editors. In one, he shares his view on what he imagines parenting a child with intellectual disability would be like.

Singer tells us that in this hypothetical scenario, which involves a child with Down syndrome, it's not his child’s happiness that he’s concerned about. It's his own as a parent. Singer says he imagines his happiness as a parent would be diminished if his child wasn't his intellectual equal. And it isn’t just his child’s low IQ that would quash Singer’s parenting gig. Having a child who wouldn’t have children of his own or be “fully independent” as an adult would be a killjoy, Singer writes.

(Um, perhaps the editors of The Journal of Practical Ethics should do a Google search on people with Down syndrome who are independent and do have children? No, not all, but some. And, oops—Singer likens Down syndrome to profound intellectual disability further along in his answer, when he compares the life of a person with profound intellectual disability to a pig. This is to suggest that the pig's brain makes its life more valuable (to whom? Other pigs? Most parents don't abandon their child based on a lower IQ. Either Singer doesn't know that Down syndrome is not usually associated with profound intellectual disability, or he simply copied and pasted this part of his answer from thoughts he's written previously about people with profound intellectual disability). Where was the fact checking on this piece? And, is “normal” academic language? Singer never defines what he means when he refers to a “normal” human being, the kind of child he so desperately wants. But I digress!)

Based on the reduced happiness that raising a child with Down syndrome might cause Singer, he writes that it’s ethical for him to place the child for adoption. This would enable him and his wife to have another child “who would be very unlikely to have Down syndrome,” which means they would have the child “they want to have.” 

It’s at this point, as the parent of four children—two biological, including one who has multiple disabilities, and two who are adopted—that I started to laugh. Is that seriously what Singer thinks parenting is about? Getting the child you “want to have?” Um, doesn’t that sound like something a teenager would say? I wonder what other human characteristics, separate from Down syndrome, might place a child on Singer's “not wanted” list? How, exactly, does this qualify as scholarly, and not hate? Should we expect, in The Journal of Practical Ethics, to read Singer's thoughts on why he wouldn't want to raise children who are marginalized and discriminated against in our culture for other reasons?

Call me academically stupid, but many people (and we know Singer is very concerned about the views of “most people”), would say that parenting is about learning to love a child unconditionally. Further, most parents recognize that it’s often through parenting a child who is NOT a “mini-me” that they most grow and develop as a person. This is why research finds that parents of kids who are disabled and chronically ill report post-traumatic growth—not just stress. The world sure is a complex place, isn't it? And we parents sure are complex beings, aren't we?

To reiterate, Singer believes it’s ethical to place a child for adoption because it’s not the child he wanted to have, which means it will make his life less happy. How does Singer propose we handle parenting children who, over a lifespan, develop problems that aren’t what parents imagined we “[wanted] to have?” You know, those children who develop serious mental health problems or who are diagnosed with cancer or a learning disability, or who are the victims of assault, or who are injured in a catastrophic accident?

Forget about children. What about aging parents who are no longer able to be “fully independent?” How do we solve the problem of the reduced happiness that these seniors pose for their children, partners or other family members?

But wait. Does the happiness of the parent outweigh the happiness of the child? How can you even separate one from the other? Is happiness in families a matter of simple emotional bookkeeping? Does the happiness of the able family member outweigh the happiness of the family member who becomes disabled or ill? Should we “adopt out” people later in life, when their dependence begins to crimp our style? 

Singer represents a frightening world defined by reason and devoid of the empathy and connection that I believe is what truly makes a person human. I’d love to hear about what it was like to grow up calling him “Dad.”

In the meantime, allowing Singer to spout his hatred of people with disability under the guise of academic knowledge is not okay. A bioethicist friend tells me that The Journal of Practical Ethics is a “big league” ethics journal. If so, why doesn't it correct the inaccuracies and generalizations Singer makes about the lives of people with Down syndrome and their families? 

Some final thoughts. Singer's ethical “math” depends on a few things. 

One is that Singer and his wife's future child, after they place the first one for adoption, is not born with disabilities. Why is that taken as a given? At age 30, I gave birth to a child with a spontaneous, rare genetic condition, meaning this genetic change happened at conception and is not something my husband and I carry. Is there any reason why something similarly random might not happen to Singer and his wife the second time around? If their second child is born with disabilities, will they be adopting out that child as well? 

Second, Singer assumes in his scenario that there are couples who are happy to adopt his child with Down syndrome. As the parent of two adopted children, I'm sorry to inform him that there are often NOT families available to adopt children, whether they have Down syndrome or not. It is telling that Singer assumes that only “couples who are unable to have their own children” would adopt a child with a disability. In fact, some parents who are able to have children choose to adopt a child with a disability, sometimes more than one. We have written about a number of these families in BLOOM.

And finally, does Singer's wife have any influence? What if his wife, after giving birth to a child with Down syndrome, decides this child “is” the child she wants to have. What if she refuses to place the child for adoption? Will Singer then look for a second wife? Are all family members disposable in Singer's world?

Here is the passage from The Journal of Practical Ethics:

Q: You said in an interview with Andrew Denton that if you and your wife had a child with Down syndrome, you would adopt the baby out. Could you explain the ethics of this and isn’t it a selfish decision? Could you elaborate on your views about disability, in particular why you think a life with disability is of less value and what you think the implications of that are?

Singer: I was assuming that there are other couples who are unable to have their own child, and who would be happy to adopt a child with Down syndrome. If that is the situation, I don’t see why it is selfish to enable a couple to have a child they want to have, and for my wife and myself to conceive another child, who would be very unlikely to have Down syndrome, and so would give us the child we want to have. For me, the knowledge that my child would not be likely to develop into a person whom I could treat as an equal, in every sense of the word, who would never be able to have children of his or her own, who I could not expect to grow up to be a fully independent adult, and with whom I could expect to have conversations about only a limited range of topics would greatly reduce my joy in raising my child and watching him or her develop.

“Disability” is a very broad term, and I would not say that, in general, “a life with disability” is of less value than one without disability. Much will depend on the nature of the disability. But let’s turn the question around, and ask why someone would deny that the life of a profoundly intellectually disabled human being is of less value than the life of a normal human being. Most people think that the life of a dog or a pig is of less value than the life of a normal human being. On what basis, then, could they hold that the life of a profoundly intellectually disabled human being with intellectual capacities inferior to those of a dog or a pig is of equal value to the life of a normal human being? This sounds like speciesism to me, and as I said earlier, I have yet to see a plausible defence of speciesism. After looking for more than forty years, I doubt that there is one.

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Framing disability only as economic burden fuels hate

By Louise Kinross

An editorial in Japan’s Asahi Shimbun newspaper Saturday suggests that the massacre of 19 disabled adults in a Tokyo care home one month ago was not “an extraordinary case.”

Instead, the authors say, the killings by a former home employee reflect a culture that equates human value with economic productivity. “Eugenic ideology may have been deleted from official statements, but it may have yet to be wiped away from people’s thinking,” they write.

When hospitalized months prior to the attack, the murder suspect said he was attracted to the eugenics program of Nazi leader Adolf Hitler.
  
“There are 800 million people with disabilities worldwide,” he told a city official. “Money is spent on them. It should be used for other purposes.”

In a letter he sent to a politician he wrote: “I envision a world where a person with multiple disabilities can be euthanized, with an agreement from the guardians, when it is difficult for the person to carry out household and social activities.” 

One of his stated goals was to "revitalize the world economy."

The Asahi Shimbun editorial notes that disability discrimination “undeniably persists” in Japan and “[lurks] everywhere.”

Prior to the killings, another Japanese politician with a son with severe disabilities received an online comment saying she should abandon her son, in the interests of the country, because his care costs too much.

The editorial also notes that an education board official visited a school for children with special needs, then questioned why disabilities can’t be better identified prenatally. “So many people are employed,” she said. “That must be costing a great deal.”

A couple of weeks ago this WIRED article popped up on my screen: The Price of Zika? About $4 million per child.

The piece itemizes the medical and other costs of raising a child with Zika and multiple disabilities. Then a Yale scientist notes: “That’s a productivity loss for the country as a whole.”

Is there not something deeply disturbing about equating a child's life with a country's productivity loss? Remember, Hitler referred to children and adults with disabilities as “useless eaters.”

There are children living with Zika, now. How do stories like this influence the way in which these children are treated by families, health professionals and the public?

A couple of weeks ago I read this piece in The New York Times—Zika: A Formidable Enemy Attacks and Destroys Parts of Babies’ Brains (that headline no longer appears).

It reports on a study of brain scans and ultrasound pictures of 45 Brazilian babies whose mothers were infected with Zika in pregnancy.

According to one of the study authors, “the images suggest that Zika is like a formidable enemy able to do damage in three ways: keeping parts of the brain from forming normally, obstructing areas of the brain, and destroying parts of the brain after they form.”

Do we want children with Zika, who are already here, to be viewed as victims of a “war” on their brains?

In the same piece, microcephaly, a condition in which the head is smaller than usual, is described as Zika’s “sinister signature.”

Can a baby’s head be evil and treacherous? After all, we are still talking about a baby, right? 

Not a demon.

Aren't reporters supposed to avoid value-laden language?

Then I read this excellent piece on The Dos and Don'ts of Writing about the Disabled.

Under the heading First Do No Harm it says: “Never equate physical, psychological or intellectual impairment with loss of personhood. People are people.”

The Asahi Shimbun editorial ends with this observation: “Some people have conspicuous physical features. Others use different means of conversation. No human beings are totally alike. It is natural for every single individual to be different.” 

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Stevie Wonder calls for inclusion amid reminders of dark reality

By Louise Kinross

This is a grim piece today. It's a reminder of the ugly, sometimes violent, discrimination that exists in our communities against those with disabilities.

Social media lit up a few days ago when Stevie Wonder demanded inclusion at the Grammys. "We need to make every single thing accessible to every person with a disability," he said.  

Everyone got behind him, celebrities, media pundits. Meanwhile, these were the dark realities flashing across my screen.

First I read this story about a 13-year-old Winnipeg boy with an intellectual disability who was attacked by men and thrown in a dumpster where he languished for hours in the freezing cold before someone heard his cries. "You don't jump a kid in daylight and nobody see it," his father told The Toronto Star. "My son can't identify them. But somebody can...Be my son's voice, somebody."

Indeed. Can you imagine what it took for these parents to contact the media after having their son thrown in the garbage? Who will speak for this boy?

Then there's the 26-year-old man with autism and developmental disability who's been living in an Ontario hospital for two years at a cost of $1,250 a day. He isn't able to care for himself and there's no housing for him in the community. He had to be put under to have 26 teeth removed, many of them in painful abscesses that caused a fever. No one noticed that his teeth had rotted. This man is one of three with autism living in the psychiatric unit of the hospital.

South of us students with behaviour and emotional problems at a Boston school were restrained "more than 200 times last year, the result of a 'systemic failure' by staff and senior administrators that led to repeated, improper uses of excessive force, according to a state report," reports The Boston Globe. The students, in Grades 4 to 8, were "slapped, tackled and yanked out of chairs for refusing to stand." More than 40 times students were restrained face down on the ground. Big surprise? Staff often didn't inform parents.

And here's a story about an acclaimed mathematics professor who moved his family from Belgium to New Zealand in 2011 because he heard it was a great place to raise a child with autism. After winning a prestigious New Zealand research award, he's returning to Belgium because his 13-year-old son with autism has been denied residency. He doesn't have "an acceptable standard of health" the family was told.

The stories didn't stop there. As I scrolled through Facebook and Twitter they kept popping up. But I didn't have the heart to include anymore.

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My dad was disabled, and cooler than most

By Louise Kinross

Earlier this month Bill Peace, a visiting professor at Syracuse University, disability advocate and author of the blog Bad Cripple, posted a moving piece by his son Tom about growing up with a father who uses a wheelchair. Tom, now 23, has a degree in political science and plans to pursue a Master’s degree in prosthetics. Here he is with his dad in earlier days, and below at university graduation. We asked him some questions about his childhood.

BLOOM: What did you think of your dad’s disability as a child?

Tom Peace: When I was a young child, I always thought my dad's disability was cool. I got to ride around in his lap, which no one else could do. It was fun, especially when we went down hills at what my ‘little-kid mind' thought was incredible speed.

Some of my fondest memories as a kid are sitting on the floor of the living room with my dad, fixing or maintaining his wheelchair. There was a cool element to his wheelchair. [Working on it] was something my father and I did together. It was a shared experience that no other kid had. I didn't realize it at the time, but that was very important to me.

In my child's eyes, my dad was not disabled, just different. We went everywhere together. We travelled a lot and cruising down hills was the best. I remember one of my friends in elementary school telling me that he wished his dad was disabled. That really stuck out in my mind. My dad was disabled and he was cooler than the other ‘normal’ parents.

BLOOM: You wrote that growing up you stuck out wherever you went. Can you explain?

Tom Peace: My father and I stuck out, not only because many places were inaccessible, but because of the way people acted towards my father. It was the strange comments and attitudes that made me realize how different my dad was. I distinctly remember church was the first place I recognized this. I remember telling my father I didn't want to go to church anymore, and when he asked why, I told him it was because people were mean to him.

Old people would constantly harass my father and tell him that if he prayed enough, God would let him walk again. I was too little to get that this was because people could not imagine life as a paraplegic. I thought they were weird. Why would my dad want to walk again? Then we couldn't go on cool wheelchair rides and stuff.

Even today, people feel they have the right to say horrible things to my father. For example, strangers will come up to him and say “If I were like you, I'd kill myself.” Can you imagine saying that to another human being who is just out buying groceries or whatever?

Another common one is “It’s so nice to see you out.” Where is my father supposed to be? From my childhood to my teens to today, people have always come up to my father and expressed extremely negative views about disability.

Another thing that happens to this day is that people assume that I’m not my father's son. Health-care workers were the worst. Once in the ER my father was asked if he could prove I was his child.

Most often people assume I'm his caretaker. Even when I was as young as 10 people would bend down and address me, not my father. This still happens. When shopping together, a cashier will hand me the change or return his credit card to me. My father is clearly the older adult and the one who handed them the money in the first place.

People assume that just because my father cannot walk he also cannot think. He has a PhD from Columbia! As a child I was confused. As an adult I am angry.

Inaccessibility was a huge problem, as were obscure entrances. We could never go through the front door. It seemed like we always went to a rear entrance or had to use a hidden elevator. The elevators were often locked or broken (if locked, no one knew where the key was).

I still remember using the maintenance hallway of a fancy hotel in Seattle where we passed Mick Jagger. I thought seeing the back way in was cool as a kid. But now I realize that it was blatant discrimination and a major Americans with Disabilities Act violation.

BLOOM: Was inaccessibility the main challenge?

Tom Peace: Yes and no. Accessibility was certainly a challenge, but with enough time and effort, that was surmountable. Ignorant people proved to be the biggest challenge.

My secondary school administrators were outright hostile to any suggestion of equal access. Employees of all sorts of businesses clearly did not care about, or want to deal with, my father. Most access issues could be solved given a little effort and ingenuity. The primary issue was no one valued wheelchair access.

People who were supposed to be helpful were unwilling to help. The big challenge growing up was that no one gave a shit. 'Oh, the buses aren't accessible? Too bad for you!' It was not just that buildings and vehicles weren’t accessible. There was not the slightest effort to follow the law. Those blue wheelchair logos were a joke. I called them ‘the blue sign to nowhere.’

BLOOM: Tell us about some of the things you couldn’t do because your dad couldn’t enter a building.

Tom Peace: My dad and I could do anything we wanted. If a building wasn’t accessible, we did something else. I remember being in Boston. We went on the revolutionary war ship Old Ironsides. The lower decks weren't accessible. So my dad talked a commissioned sailor stationed on the ship into showing me cool stuff below deck that no one else got to see.

BLOOM: How did it make you feel as a child when you got to an event and realized there was going to be a problem getting in?

Tom Peace: In a word: excluded. I felt like there was something wrong about us that justified our exclusion. Very quickly I realized that there was nothing wrong with me or my dad. Like my dad, I got angry that the legally required accommodations were not made. It made me realize that companies and institutions like schools are not there for you, they are there for themselves. We did not fit into a standard mould, and were knowingly excluded.

BLOOM: I remember hearing your dad interviewed about a time when he was going with you on a school trip but there was no way for him to get on the bus, so he had to crawl on. What is your memory of that?

Tom Peace: That is a hazy memory. All I recall was I wanted to see the new Air and Space Museum. I also remember my dad bought me the coolest WWII bomber jacket.

BLOOM: You write about antagonism between your dad and your school principals: 'They did not like us and we did not like them.'  

Tom Peace: They absolutely made things difficult for us. They always locked the only accessible door in the evening. My dad was a Cub Scout leader. They knew my father and I attended Cub Scout meetings. Even knowing this, the doors were locked at the school.

The school flat out refused to consider getting or renting accessible buses. My school pretty much did everything possible not to comply with the ADA. We did not like them because they adamantly refused to place any importance on basic access.

They thought that making any reasonable accommodation was a choice they got to make. When my father asserted that the law required equal access he was called “entitled and bitter.” Worse he was “an expensive burden on the system” and wanted “special treatment.” Asking for equal access and to participate in my education is in no way special treatment.

BLOOM: You wrote about how when you graduated from university your dad couldn’t see you because the disability seating was at the back.

Tom Peace: Disabled seating was not at the back—it was non-existent. The place my father watched from was the only random place he could get to. All the floor seating was reserved in advance, with costly tickets. None of it was reserved for people like my father who actually needed to sit on the ground level. There were no clear lines of vision from where he sat to where I crossed the stage, so he couldn’t see me. This really put a damper on the day. My father wrote an extensive post about this incident.

BLOOM: How has growing up with your dad, including his disability and access issues, shaped you as a person?

Tom Peace: Growing up with a disabled father has made me the type of person that questions everything. I always ask: ‘Why are things this way?’ I am deeply mistrustful of institutions and authority figures. I don’t mindlessly accept the status quo.

Growing up I saw how power could be abused and certain segments of the population discriminated against. My dad was regularly screwed for the convenience of everyone else. I have always wanted to help those whose civil rights are ignored. Because of my dad I know the social support systems that exist are inadequate. Over 70 per cent of disabled people live below the poverty line and the vast majority are unemployed. This made me see, at an early age, the effects of wealth disparity.

Questioning the status quo as I do shaped my political beliefs and aspirations. I look at life as a series of challenges. I know that nothing is impossible with a little effort, ingenuity and creativity.

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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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