Off-duty officer kills non-verbal man, injures parents in Costco

By Louise Kinross

This is a horrifying story for all of us in the disability community who love someone who doesn't speak, and may not be able to comply with police orders in conventional ways.

On Friday night, Kenneth French, 32 (in photo above right, with his parents), was shot and killed by an off-duty police officer in a California Costco store. The officer also shot and critically injured French's parents, who were grocery shopping with him.

Police, speaking to reporters just after the incident, said it happened after an argument between two men. According to this news release from the Corona Police Department, "Without provocation, a male unknown to the officer's family assaulted the officer while the officer was holding his young child. This attack resulted in the officer firing his weapon, striking the male and two of the male's family members." The child was not injured.

However, French's cousin, Rick Shureih, told the Los Angeles Times that French was nonverbal and had an intellectual disability, so a verbal argument wasn't a possibility. 

"Speaking about his cousin, Shureih told the paper, 'He was a gentle giant...He's never been violent in the past. He's always been very cooperative and kept to himself.' Shureih said it's possible his cousin may have bumped into someone but he wouldn't have been able to communicate that he was sorry."

Police have not named the officer involved, who was released from hospital with minor injuries. 

This BBC piece 'Don't shoot, I'm disabled,' looks at the hundreds of people with disabilities who are killed by police in the United States each year, because they don't respond in conventional ways to police commands. It could be a person who is deaf, or mentally ill, or who, like French, has an intellectual disability.

In a more recent Los Angeles Times piece, we learned that the French family was from Toronto. "Sandra Serrao, who lives in the Toronto area and has been friends with the French family for more than a decade, said the couple and Kenneth moved to California from Mississauga a few years ago to help care for [their] elderly parents...She said Kenneth French was not the type of person to provoke anyone..."

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Tailored by touch

Two Blind Brothers is a new luxury clothing brand in New York City named for its owners—brothers Bradford, (right) 31, and Bryan Manning, 26. Bradford and Bryan have Stargardt disease, which is a type of macular degeneration that causes blindness. The company's mission is to cure eye disease by donating all profits to research.

The clothing line tells the brothers' story: Bradford and Bryan use their heightened sense of touch to select the softest fabrics and incorporate braille, their “secret language” as kids, into the design. For example, a metal tag on each shirt is engraved with raised dots that say “brother,” “vision,” or “feel.” At Two Blind Brothers, reading with your fingers is cool. BLOOM interviewed Bryan.

BLOOM: How does Stargardt disease affect you?

Bryan Manning: The big difficulty for me in my day to day is a lot of small things—recognizing faces, reading menus, sometimes navigating New York City. I’ve walked into the wrong Uber many times, which is always a fun incident that gets a couple of laughs and a few weird looks. In my professional life you have to be very detail-oriented in everything you do, especially when worrying about something like buttons on a shirt. You have to really double check your work a lot with visual impairment. A comma and a period can look very similar, as can an ‘o’ or an ‘e.’ So making sure you’re diligent [is important].

BLOOM: Do you still have peripheral vision?

Bryan Manning: With Stargardt, you have trouble metabolizing vitamin A, which destroys your central vision, so there’s a dark blurry spot in the centre of your eye. We have some peripheral vision—it’s not 20/20, but far better, which is why we can get around the city without too many problems. Seeing finer details or distances becomes an issue.

BLOOM: Are there any strategies that help you with that?

Bryan Manning: Having good friends is really beneficial for things like reviewing a menu. The best thing in the world from a technological standpoint is using an iPhone to zoom in. Bradford and I take a lot of photos. If you were to go through my phone you’d wonder ‘Why does he love street signs so much?’ We end up taking pictures to figure out where we are. We both use Apple computers which have a great zoom function. So for day to day, Apple products with zoom are the best thing in the world.

BLOOM: What was it like growing up with vision loss?

Bryan Manning: Our parents were unbelievable. They always allowed us and pushed us to try everything we could dream of. So if we wanted to play soccer or football, we were there every day. They allowed us to try and fail, which is the best thing that ever happened.

As a kid, when you have anything that’s different, you’re going to get a little picked on. So a kid saying ‘How many fingers am I holding up?’ was a common occurrence. But we had a lot of great structure around us. For me, having a big brother I could call and he would turn it into a joke and we’d laugh about it together was a great thing.

It can be frustrating as a child when you don’t quite have all of the coping mechanisms for how to deal with problems. I do think it’s a blessing in its own way because you learn from a young age how to deal with issues. You learn how to slide through a conversation when you don’t recognize a person, and because you have to walk up to a chalkboard to do the math problem, you become a bit more comfortable putting yourself out there.

BLOOM: Did you get the accommodations you needed at school?

Bryan Manning: Anytime we would ask for anything, we got it. We had a vision teacher when we were much younger and she taught us to read braille and gave us a lot of methods to deal with problems. Bradford and I both went to the University of Virginia and it was great. I give a lot of credit to my high school. They were always accommodating, but they also held you to the same standards as the other kids and that was an important lesson.

BLOOM: What was most challenging about growing up with your disability?

Bryan Manning: One of the more challenging things was that with a degenerative disease, they don’t know when the vision loss will stop.

BLOOM: That sounds anxiety-producing.

Bryan Manning: It wasn’t in the forefront of our minds every day, but it was challenging. I give a lot of credit to the support system our parents and vision teacher gave us. They would say ‘Yup, there’s a chance this happens, but we’re not going to think about it. We’re going to live every day, and when we get to a problem, we’ll deal with it.’

BLOOM: Is your sight still deteriorating? 

Bryan Manning: It’s different from person to person. There’s a pretty severe decline in the first few years and then a steady progression for 10 years. And then it usually plateaus. For me when I was first in high school I could read 12 point font.

BLOOM: What size font could you read now?

Bryan Manning. I don’t know. 'Big.' I have a wonderful girlfriend who reads everything for me or I zoom in on computers.

BLOOM: There was an essay last week in the New York Times by a guy with physical disabilities who said: ‘Long ago I decided that if I was going to like myself, I had to make friends with the disability that was inherently part of me.’ Was that a process you went through?

Bryan Manning: That is a phenomenal quote. I love that. I do think vision loss is tough, no one will make a claim the other way, but I do see an incredible amount of positives in it. It really has been a bit of a blessing. It’s shaped who I am today and Bradford and I have the best partnership in the world. Bradford and I could always joke about it, so it was never seen as a disability, but as hey, here’s something you have to deal with. We always poked fun at ourselves with it. If you’re willing to accept and make friends with a disability it becomes so much easier and your life becomes a lot simpler and happier.

BLOOM: How did you get the idea for your business?

Bryan Manning: It’s a funny story. We love doing little projects together. We were trying to come up with a way to give back to medical research, which we love so much, but also to a community that has been so great to us. One day we were shopping in Bloomingdale's and we lost each other after about five seconds. That always happens. I need to put a tracker on Bradford. Because we can’t see the clothing that well, we run our hands over everything and when we find something we like we pull it out and take a closer look.

BLOOM: To take a photo then and blow it up?

Bryan Manning: Yes, we’d see what size it is or who makes it and what the quality is. Does it fit us and is it a men’s shirt? Once I chose a women’s shirt. Anyway, this one day we got separated and when we got outside we realized we’d actually bought the same shirt.

BLOOM: You both picked the same shirt—at a store the size of Bloomingdale's?

Bryan Manning: Yes. We had this ‘aha’ moment where we thought maybe there is something to do with touch: there’s a bit of science that when you lose one sense, you become more aware or pay more attention to your other senses because you have to. Bradford and I learned braille from an early age and it’s a whole language based on feel. We believe if you pay attention to it, and focus on it, this sense of touch becomes stronger. We thought we’d build Two Blind Brothers around touch and softness, but also try to create a community around something to do with visual impairment.

BLOOM: How do you describe your clothes?

Bryan Manning: We sell luxury casual wear, but it’s more than that because it’s cause-driven clothing. We don’t take a salary and 100 per cent of our profits go back to medical research. We’re striving to produce not just a shirt we think is the most comfortable you’ll ever put on, but when you wear a Two Blind Brothers shirt, you’re supporting a mission. You’re supporting this fight against blindness. From our standpoint, you’re joining this community and brotherhood around trying to have clothing represent something more than just making money. It represents a value system I believe.

BLOOM: I love that the name and products incorporate things related to blindness and braille. Was this a conscious choice and why?

Bryan Manning: I’m not going to take all the credit. We both learned braille at an early age, which was great because it was a secret language between Bradford and I. Putting braille on the clothing seemed like such an homage to where we came from. Braille is really a relic in that everyone knows what braille is, but no one really knows what it says. So some of our t-shirts say ‘brother,’ ‘look,’ or ‘feel.’ It’s representative of what the brand is. We love the stylistic idea of being able to read the word but have the word stand out to you as well. It’s who we are and what we represent.

BLOOM: I'm glad you didn't shy away from what makes you unique.

Bryan Manning: You have to embrace what is different and unique about you. Everyone has things they’re great at and not so perfect at. Embracing the things you’re not perfect at, and loving yourself for those things, is what makes you happiest, I think.

BLOOM: I understand you’re trying to raise $1 million for research. What type of research are you funding?

Bryan Manning: We’re focused on pre-clinical trials for new gene and stem-cell therapies, where we think we can provide the most value. We’re also working with the Foundation Fighting Blindness, which is 45 years old and is near and dear to our hearts. It’s been a giant beacon of hope for us. We work with them quite often.

BLOOM: I read that you don’t take a salary from the company.

Bryan Manning: Bradford worked in wealth management and I was in data sales and we were successful in our previous careers. Our idea was that we’d rather cure blindness than put another penny in our pocket.

BLOOM: With some disabilities, like autism, there’s a tension in the community between people who want a cure and people who want acceptance and support for those living with the condition. Have you thought about funding programs that improve quality of life for people who are blind? 

BLOOM: Bradford and I are more focused on a cure from the monetary standpoint. We’re very big into science and we love that aspect of it. Once you start curing visual diseases, they’re all very related. The eye is a fascinating organism and we think some of this eye research can be expanded to the rest of the body. But that isn’t tomorrow. The idea of acceptance and quality of life and community building is incredibly important to us. Curing blindness is the goal, but there has to be a lot in-between. That’s why we try to talk to our community. We get messages every day that make us smile and laugh and almost cry with just how sweet and kind they are. We try to open dialogue with anyone who’s interested.

BLOOM: There’s an interesting piece on your blog The Blind Spot called 5 Life Hacks For People Who Are Visually Impaired. Will you be offering more content like that?

Bryan Manning: Our limitation right now is manpower. We’re spread pretty thin. We’re redoing our entire website with the hope of having a lot more flexibility to create content, and make the site more interactive and interesting. We’d like to build up the blog and the community side of the site.

BLOOM: Have you faced any obstacles promoting your clothes related to the way our culture devalues disability or difference?

Bryan Manning: That’s a great question. I have only experienced love from everyone we’ve reached out to and everyone we’ve spoken to. There’s been a side of the business that’s shown us how many unbelievable and kind people there are out there in the world. We’ve only felt great and positive things. It’s been humbling to say the least.

Watch Bryan and Bradford Manning talk about Two Blind Brothers on The Ellen Show.

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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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A play, an alphabet board, a new voice

This Is The Point is a play about two couples: a man and woman who have cerebral palsy, and a man and woman who have a child with cerebral palsy. One of the actors uses a head pointer to communicate with an alphabet board. “The play is about love, sex and disability,” says Dan Watson, a co-writer and actor whose son Bruno, 7, has cerebral palsy. He co-leads Ahuri Theatre, which is producing the play with The Theatre Centre. “The themes we circle around are love, parenthood, communication and acceptance.” BLOOM interviewed Dan to learn more.

BLOOM: Tell us about Ahuri Theatre.

Dan Watson: It was formed by me and a few other people who went to school together in France. We did a lot of physical theatre there. We worked with mask and clown and mime and tragedy. Ahuri works in Japan and Canada. We’ve done a lot of shows that incorporate different languages. When we write, we write on our feet, not sitting at a computer. We get in a space and we do improvisation and the script comes at the end. This Is The Point evolved more out of my personal life. Our older son Bruno is non-verbal and I wanted to do something that looked at language that went beyond words.

BLOOM: I'd love to hear more about Bruno.

Dan Watson: Bruno really likes rough-housing, loud music, wrestling, and going fast. His brother Ralph is four, and the two of them have fun running around with Bruno in his walker and Ralph on his bike. To communicate, he may look at things he wants, or vocalize or gesture with his arms. He uses an eye-gaze system and some low-tech tools like a communication book. We want to find a way for him to consistently advocate for himself—not just by saying ‘no,’ but by actively saying ‘I want to do this.’

BLOOM: In This Is The Point, one of the characters has cerebral palsy and uses a head pointer and alphabet board to communicate. Why did you want to do this play?

Dan Watson: Tony Diamanti is the actor who is non-verbal and uses a chair. We met Tony through another project called What Dream It Was. We invited him to work on that, but he said he wanted to do his own play and he sent us a play. I was struck by his voice, his sense of humour, his passion and his wanting to share his sexual experiences and to make sure that people know that people with disabilities are sexual human beings that live very full lives. I think a lot of people in the general public don’t see someone who looks like Tony that way. I thought this is exactly the kind of opportunity that I want to make happen. If Bruno was older and wanted to do this, this is something I’d hope someone would take on and work with him on.

I didn’t know where it would go, but we started to work on this play. We wanted all four of us to be on stage.

BLOOM: So in addition to you and Tony, there is Liz MacDougall, who is Tony’s partner in real life, and Christina Serra, who is your partner? 

Dan Watson: Yes. At first we tried to make the play the way you usually do. It was very physical, with scenes and blackouts. But it wasn’t working for Tony. We were trying to fit him in to something that wasn’t going along with the way he communicates and lives. So we started to have Tony communicate the stories himself, but then we didn’t fit in. We’ve come to something where we talk in the show and we talk with the audience and we also jump into scenes that are re-enactment scenes. By the nature of who we are, these scenes all have connection to disability.

A lot of the stories we share are, for lack of a better term, trying to normalize in a certain way disability—and sharing our lives, rather than lecturing or trying to teach people. We model the way we work together so we don’t hide the transitions that take a long time. It takes a long time to get set up and there’s nothing wrong with that, whereas we live in a society that is obsessed with speed. We’re asking people to stop and slow down and be with us and to feel that that’s okay. It takes Tony a long time to communicate because we have him talking directly to the audience and the audience has to read along with him.

BLOOM: In a trailer for the play, Christina makes a comment about how we’re not as inclusive as we think we are. Then she says: ‘You don’t know about disability until you’re opened up into that world.’ It seems like your play might be giving people an immersive experience into that world.

Dan Watson: That might just be the thing we want to have happen to an audience. When people encounter disability, it can bring up a lot of different feelings, and some uncomfortable ones. What we want to do is share and open them up to that world and show them that it’s okay that people with disabilities live all different kinds of ways. Just like anyone, they have struggles and happy moments.

BLOOM: I found it very interesting what you said about speed. Our culture glorifies speed. This is something I’ve been aware of because my son has a number of physical disabilities and he can’t move quickly.

Dan Watson: We were initially trying to fit the play into a form that was about speed. We need to move onto the next scene, keep it going, keep the energy up. Then we realized that’s not what this group is bringing, and slowing down is not a bad thing. That’s when things opened up for us. We presented it a couple of times and audience members say they feel at ease and there’s a real casualness to the show. We’re welcoming them and opening them up into our world for a moment.

Of course this is part of a bigger conversation. I don’t have any visions of everyone coming away from the show knowing everything about disability, nor do I want that. We’re just sharing our lives and our perspectives. I do hope they go away and take us with them, and that maybe we pop up into their heads in their daily lives when they need us—perhaps even when they’re encountering people who don’t have disabilities but who are different.

BLOOM: Did you have experience with disability before Bruno was born?

Dan Watson: No. I don’t think I even knew what cerebral palsy was before Bruno was born. His life has opened me up into a whole different community. I have these memories of being in school and kids with disabilities were in chairs on one side of the playground watching us. And I look back and think ‘Oh my god,’ I didn’t even think about them.

BLOOM: Have your thoughts about disability evolved?

Dan Watson: Yes, and with this show too. At first we were focused on the way Tony communicates. When I see people encounter him it’s a bit of a novelty—they’ve never seen something like that before. Then Tony says: ‘Pay attention to what I’m saying, not how I’m saying it.’ Over the course of working on this show in a funny way disability is less of an issue. The differences aren’t so apparent to me anymore. Tony is who he is and it’s only when I see other people encounter him that I go ‘Oh yea, Tony is non-verbal, yet I forgot in a funny way.’

BLOOM: I think having a child who doesn’t speak conventionally is challenging because verbal speech is so prized in our culture.

Dan Watson: It is really hard. There’s constant pressure from outside in terms of how Bruno interacts with people. There’s a scene in the show where I’m on the playground and that’s always a big challenge because Bruno and I go to the park all the time. We go on the accessible swing and I’m always having to negotiate with kids who want to be on the swing. And explain to them who Bruno is and why he can’t go on the other swings. You have to be this advocate and do all this explaining when you just want to hang out on the swing. Then you also wonder—what does Bruno think? I’m sure he knows this is going on.

We were just talking this morning about subtle communication things that you know with your child that other people don’t know. You probably see this with Ben. It’s hard when you can see what’s going on but others can’t seem to see it.

BLOOM: What’s been the greatest challenge of producing this show? Was it altering it from a traditional format?

Dan Watson: Yes. But that’s also the artistic—that’s what artists need to do is push beyond what they know, and that includes disability but also how you make things work. Usually people who don’t have disabilities are cast as characters with disabilities. That’s because it’s easier for the show—and the way the show is done.

But if you take a step back and say no, we’re working with people who are differently abled on stage, there are a lot of opportunities that present themselves. That’s really exciting as an artist. Instead of doing it the same old way you’ve always done it, it can generate amazing, different work that you’ve never seen anywhere else. It’s all about who’s in the room. Sometimes that’s a challenge—it’s taken a long time for us and trying different things. But the challenge is actually part of the reward, as well as what’s really engaging.

This Is The Point runs from Nov. 4 to 20. Book your tickets here. Photo below of Dan Watson, Christina Serra with their children Ralph and Bruno. 

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A prosthesis, and a work of art

By Megan Jones

In 2013, McCauley Wanner and Ryan Palibroda did what stereotypically passionate artists are wont to do: they quit their jobs, sold their cars, and moved across the country to pursue a dream. But their story wasn’t a cliché. McCauley and Ryan were working on an unconventional art project—a series of bright, fashionable covers for prosthetic legs.

The undertaking had begun in 2010 as a university project. At the time, McCauley was completing her masters in industrial design at the University of Calgary. While she’d decided to turn her attention to medical design, she was determined to incorporate her long-held interest in fashion into her work.

A friend introduced her to John-Paul Austring, a fellow U of C student who had lost his leg to cancer at the age of 16. The two began talking about prosthetics, and the aesthetic options available to those who wore them. During her conversations with John-Paul and other amputees, McCauley quickly realized there weren’t many choices. “The more people I talked to the more I realized there was nothing,” she says. “It was shocking.”

She decided to take matters into her own hands, and dedicated her thesis to imagining what fashionable prosthetic covers might look like. After she finished school she joined with Ryan, who’d recently completed his masters of architecture. He worked on the practical, physical designs. Combining their skills, the pair soon began developing their own real-life models.

Today, the project has grown into Alleles, a Victoria, B.C.-based company that produces the bold prosthetic covers long envisioned by McCauley, now 30, and Ryan, 35. “An Allele is a biology term meaning a mutation of a gene responsible for causing variation like hair colour, eye colour, or smooth as opposed to wrinkly,” McCauley says. “Our company is all about providing variety to showcase variety.”

Their devices, which are made from plastic, attach to prostheses using a strapping mechanism. Since launching in October 2013, Alleles has produced around 1,000 of them.

Ready-to-wear covers are generally priced between $325 and $500 (custom models cost more—for example, some buyers have requested designs that feature tattoos they’ve lost along with their limbs). From the beginning, affordability was a key concern for McCauley and Ryan. They’d seen very few fashionable prosthetics online, and those that existed were typically elaborate art projects that cost thousands of dollars.

“We designed it be a retail product,” Ryan says. “We wanted people to actually be able to buy them.”

While the pair currently dedicates nearly 12 hours a day to working with and for amputees, prior to starting the project, McCauley and Ryan had very little experience with disability. In a way, this was an asset, they say. Being outside the industry meant they didn’t have preconceived notions about how prosthetics should be made, which allowed them to take more risks.

“It often seems like in medical design, people are concerned with getting their clients to function again in the setting of a hospital or clinic,” McCauley says. “But they don’t really think about that person living their life in the real world on a daily basis.”

“As outsiders we got to ask ourselves, ‘Why doesn’t this have any soul in it, why doesn’t this have any heart?’”

In order to make up for their lack of prior knowledge, the Alleles team made sure to consult closely with amputees, who talked about what they wanted and needed from their prosthetics.

One of those people was John-Paul. Since meeting McCauley during their university days, the now-29-year-old has stayed connected to the project and regularly gives feedback on their products. He has five covers of his own, and wears his current favourite 24/7, only removing it when it needs to be washed.

When he first lost his leg, John-Paul was given a bulky plastic cover, which created strange, unnatural-looking contours under long pants. He was embarrassed about how he looked, but felt hesitant to speak with his prosthetist, fearing he’d be seen as frivolous.

By contrast, he says, the Alleles covers feel like an empowering form of personal expression. “A prosthetic is a medical, utilitarian device,” he says. “It’s something that’s done to you. With these covers though, you’re turning the tables.”

John-Paul feels a sense of pride when he wears his covers, and a willingness to embrace his disability. “People don’t choose to lose limbs or get prosthetics,” he says. “But now you can choose to put something artful and beautiful on it. That becomes part of the healing process.”

Best of all, he says, the intricate designs have changed the way strangers interact with him. In the past, he says, people would stare at his missing limb, or ask him prying, personal questions about what happened to his leg. He felt singled out, objectified. And most days, he had no desire to rehash the painful experience of having cancer with people he barely knew.

With the covers though, the conversation shifted. Suddenly, people were complimenting him on the exciting designs. He could talk about his style, rather than his prosthetic. It was a much better icebreaker.

“Some days, I still struggle with the idea that my disability is a sign of weakness to others,” he explains. “This cover helps me get away from that. It shows I’m owning my disability.”

***

There’s a reciprocity between the Alleles designers and their customers. Just as people like John-Paul are influenced by the covers, individuals who wear Alleles products inspire McCauley and Ryan, who often name their designs after significant people or events. John-Paul has inspired two titles, with one cover bearing his first name, and another, his middle name, Steen.

In the future, McCauley and Ryan hope to expand their collaboration beyond individual customers. They’re hoping to partner with larger companies to become more visible in the mainstream fashion world. A brick and mortar store is also in the works. The couple plans to open up a boutique where customers can come to browse and get fitted. Ultimately, they’d like to include a line of clothing that would complement their covers as well. To them, this blending of fashion and disability is crucial.

“What people don’t understand sometimes is that everyone—regardless of ability—cares about how they look,” Ryan says. “Everyone has a way they want the world to see them.”

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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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Aren't humans more than what we 'do?'

By Louise Kinross

“What do you do?”

It’s a question I used to ask when I was young and meeting someone new at a party. It was a way of learning about a person, but, if I’m honest, it was also a way of measuring them. What were their interests? How educated were they? What kind of job did they have?

I can’t remember the last time I’ve used that line. I imagine it dropped out of my vocabulary over the last two decades, since my son with disabilities was born.

I sometimes ask people now, “What do you enjoy doing?” but that is a whole different question.

I am sick of our culture’s obsession with what people can “do” as individuals and how it’s used as the measure of human worth.

It’s this logic that’s devalued people with disabilities, who may not be able to do the same things as those without, or who may do them in an unconventional way or with the assistance of a guide dog, technology or other person.

If we are to value human diversity, then surely we need to let go of a concept of human worth based solely on individual ability and performance.

Aren’t we more, as people, than what we do?

I believe we are, and this is why I’m disheartened when someone attempts to convey the value of a disabled life (yes, I’m using that phrase because of the SayTheWord: Disabled campaign) by trotting out all of the things a person can do.

The latest was this story by Rachel E. Adams in Pacific Standard Magazine: My Son Has Down Syndrome—Stop Telling Me He Has No Future.

Rachel is a Columbia University professor and author of Raising Henry: A Memoir of Motherhood, Disability and Discovery. She's written in BLOOM.

In the Pacific Standard piece, she talks about how medical specialists and others paint a negative view of what people with Down syndrome or more severe disabilities can do as children and adults.

She says it’s this reasoning that feeds in to the practise of parents who stop the growth of their children with severe disabilities through surgery and hormone treatment. Because it’s assumed these children have low intelligence and little capacity to do anything in the future, why not make them child-sized for life, and easier to carry and take care of?

She then contrasts this with examples of what people with severe disabilities and her son have, in fact, been able to do.

For example, she talks about Ruth Sienckiewcz-Mercer, a child diagnosed as an “imbecile” by doctors after brain inflammation, who later was discovered to be able to communicate in a rich and sophisticated way through the use of her eyes.

She notes that author Michael Berube's son Jamie, who has Down syndrome, accomplished most of these things that utilitarian philosopher Peter Singer deemed impossible for a person with an extra chromosome by the age of 14: “We cannot expect a child with Down syndrome to play the guitar, to develop an appreciation of science fiction, to learn a foreign language, to chat with us about the latest Woody Allen movie, or to be a respectable athlete, basketballer or tennis player.”
  

We learn that her son Henry, at age eight, “can read and write; recite whole episodes of The Muppet Show by heart; swim across the pool; and just started his first season of Little League.”

I think this is fabulous.

But what does it have to do with her son’s worth as a human being? Would he be less valuable if he couldn’t read and write at age eight, or swim the width of a pool? Do we need to “do” things to justify or enjoy our existence?

I agree with Rachel that it’s wrong for health professionals to “deny the possibility of an open future” for children with disabilities. All children and families deserve to dream about living a great life.

But why tie a great life to conventional success? Is that useful, or healthy, for anyone—disabled or not?

What about dreaming of a world in which your child feels worthy and that he or she belongs? What about a world in which your child feels “good enough” just as they are, and not contingent on their next big “win” or mark?

At the end of her article, Rachel talks about how she used to seek out adults with Down syndrome to help her imagine what her son might become in the future. But then a therapist set her straight: “Henry’s future is going to be completely different,” the therapist said. “With all the therapy he’s getting, and the educational opportunities available today, who knows what he’ll be able to do?”

Again, with the emphasis on doing as in “I do, therefore I have value.”

This therapist actually denigrates the value of adults with Down syndrome by telling Rachel that her son will “do” so much better.

Which brings me back to what a tragedy it is that we can’t move past conventional notions that link human worth and ability.

Isn’t value a birthright? Does it really have to be earned through what you do? Is our worth always fragile and teetering, given that at any moment we could lose our abilities due to illness or accident? 

Do we really want to make respect and dignity conditional on how a person performs? In other words, if you're not able to do x, y, z, then I have no respect for you?

Why is it that we can’t assign value to each person, simply because they’re human?

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A son's disability gives this dad a deadline for adventure

By Louise Kinross

Yesterday I heard a fabulous podcast on The New Family, a Canadian blog by Brandie Weikle that shares unique stories about all the different ways a family can come together and live. 

The New Family has dug up some incredible stories that include raising children with disabilities. 

Yesterday's podcast Seizing The Day With Your Family was about one dad's pursuit of world travel when he learned his son's degenerative condition meant he would lose skills over time.

That dad is David Knapp-Fisher of Victoria, B.C. 

When David learned his son Tristan had Duchenne muscular dystrophy, he vowed to take him around the world before Tristan lost the ability to walk, which doctors predicted would happen in five years.

Coming up with the money was no small feat, and included moving with his wife and son into a 400-square foot bachelor apartment to save on rent and eating lots of Kraft dinner.

When Tristan was eight the family had saved enough to go on a month-long whirlwind to Europe, visiting seven countries. One of the most beautiful anecdotes David tells is getting to the Notre Dame Cathedral in Paris and realizing there was no elevator! He carried Tristan, on his shoulders, up 387 steps so he could see the gargoyles at the top. 

Two weeks after returning home, Tristan had a fall and never walked again. 

David says he's made "amazing life experiences" his family's top priority over material things. 

This interview certainly gave me a lot to think about, and act upon.

Learn more about David's story in this Ted Talk. 

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How does disability enter into care decisions about preemies?

By Louise Kinross

Last week I read this post called One Size Does Not Fit All about “shared decision-making” between parents and medical staff in a neonatal intensive care unit. It’s written by a Winnipeg neonatologist. Kate Robson, who is the parent coordinator in the NICU at Sunnybrook, posted a link to the piece on Facebook.

In looking at challenges to agreeing on whether intervention should be offered to a small preemie, the doctor gives an example of a woman who is in advanced labour at the hospital at 24 weeks. At 24 weeks parents are given the option of resuscitation or no resuscitation. 

The doctor notes that he has about 15 to 30 minutes to share information and a pamphlet.

 
“…we do our best but don’t for a minute think that shared-decision making has occurred.” he says. “I don’t believe this is possible unless the family has prior experience with a preterm birth or perhaps is a health-care provider working with newborns or children with disabilities themselves.”

I posted a comment saying that he makes a good point that parents with no intimate experience with disability will have a hard time predicting what the experience will be like if their child is diagnosed with disabilities. But so will health providers who've had little exposure, over time, to families raising kids with disabilities. 

“In the same way that a parent who’s had no firsthand/intimate/long-term experience with disability can’t accurately predict what that experience will be like, neither can a health provider who lacks that kind of exposure,” I wrote.

Annie Janvier, a neonatologist at the CHU Saint-Justine Children’s Hospital in Montreal, responded to my comment on Kate Robson’s Facebook page).

“…and providers only see children and families when they are not at their best (sick, in hospital, ER...),” Annie writes. “They do not see them during their family life, at school or birthday parties. In the literature, you will find we, physicians, are very pessimistic when it comes to disability. 

“When I hear another physician/nurse/provider tell me ‘parents have no clue what disability is’ I often tell them ‘I don't think you do either.’ We have to teach families about adaptation, resilience, coping. While other areas of medicine (cancer, amputees, spinal cord accidents, colostomies) have examined that, we haven't. Parents want to know about happiness, functionality, family life, friends and relationships, love, regrets, etc., not a list of diagnoses.”

Thoughts? 

Katharina Staub, outgoing executive director of the Canadian Premature Babies Foundation, posted this comment.

“Having given birth to preterm twins at 27 weeks of gestation has been a life-changing experience for me. I remember the prenatal consultation very well, even seven years later. It was full of statistics, negative outcomes and I was alone late in the evening. I was 25 weeks—the consult left me bewildered, fearful and stressed. It was actually not a discussion, I was given information.

 
“‘Partnering With Parents, One Size Does Not Fit All.’ I do agree with this title. Each family is different, comes from a different place, has different values and expectations when they end up in a delivery room unexpectedly at 23 or 24 weeks gestation. 

“I think what needs to be looked at is what shared decision-making means. What does it mean to provide ‘pertinent information’ to families? Is it giving a lot of statistics? How do health-care professionals decide what information is to ‘be delivered’ ? 

“I believe that in a shared-decision model, there is a discussion about this baby—the family’s hopes and dreams. This does not have to be a two-hour discussion, but knowing about the family, their hopes and dreams, will help in guiding the ensuing discussion. Do we need to discuss all potential outcomes at this time? I don’t think so.

“A number of parents and I have written an article on this topic in June, 2014 in Acta Paediatrica: Our child is not just a gestational age: A first-hand account of what parents want and need to know before premature birth. The recommendations we make to health-care providers are as true today as they were then.”

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