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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'I come from a family of nurses'

By Louise Kinross

Caroline Ivorra (left) is a registered nurse on Holland Bloorview’s brain injury rehab team. She works with children who are hospitalized as a result of brain trauma or illness. Both of her parents are nurses, and her mother Marion worked for years on our complex continuing care unit. Thanks to physiotherapist Kelly Brewer for suggesting Caroline for our series of candid interviews with clinicians and researchers.

BLOOM: How did you get into nursing in children’s rehab?

Caroline Ivorra: Before nursing I worked at an insurance company but it wasn’t stimulating enough for me, so I decided to go back to school as a mature student. I come from a family of nurses and my mother used to work here so that was an influence. While I was a student I worked here as a health care provider for our respite camp one summer. That opened my eyes to the idea of working on the floor with children. As much as I came to work, it didn’t feel like work. I learned a lot from the kids, from the resilience they have. And the colleagues were great.

BLOOM: What does a typical day look like now?

Caroline Ivorra: I come in and get my three patient assignment for the day, and receive the hand-over report from the previous shift. Then I’ll read through my patients’ care plans to see what needs to be done intervention-wise. Because I’m on the brain-injury unit, we often have behavioural plans, so I’ll read through those tips and strategies. Based on what I read, I plan and prioritize for the day. Then I’ll go and check on patients, introduce myself, prepare their medications, help them get up and have breakfast and send them off to school or therapy. Then I interact with the physicians and therapists. A therapist may have to show me a new exercise they’re working on that they’d like us to bring up to the floor. Then we bring the kids up for lunch and help them change or toilet or have a break. We bring them back to school or therapy in the afternoon. If a child isn’t feeling well or I want them to see the doctor, I might keep them on the unit.

BLOOM: What’s the biggest challenge?

Caroline Ivorra: Sometimes behaviours are quite challenging. Brain injury can cause agitation. It can change a person’s comprehension and ability to process and focus. You have to learn how to give a child one task at a time, or how to ask a question to get an appropriate response. If the child gets angry at you, it’s not because of you. It’s part of trying to work through their healing and rehab. Behaviour is challenging because sometimes a patient is so set in their mind and you can’t change it. But you try to manoeuvre and figure out a way to cooperate.

The skills and meds and stuff you can learn. But a behaviour can be different from one hour to the next and from one day to the next.

BLOOM: How do you cope with that?

Caroline Ivorra: Sometimes I’ll ask my colleagues for help. They may have had this client or dealt with similar situations, so that team effort really helps. Over the years I’ve learned not to personalize things as much.

BLOOM: You’re working with some families whose children were healthy before being in a catastrophic accident. They’re in a great deal of distress. How do you support them?

Caroline Ivorra: By talking about it. Sometimes yes, I’ll cry too. It can be hard. I try to support the family as best I can by listening. Sometimes they just want to talk and have someone listen. I may not have the answers in terms of why this happened, and I may not be able to say what the future will hold. But at least I can support them with the tools and resources we do have. [I try] to empower them.

BLOOM: What do you love about your job?

Caroline Ivorra: The kids. I learn so much from them. They’re happy and they will joke and play and have fun, even though they’re in hospital. We all try to make it as normal as possible for them with day-to-day activities and encourage them with what they can do.

BLOOM: What have you learned from the families?

Caroline Ivorra: You can get the same results doing things different ways. Some families like things done a certain way, and another family likes it a different way. As long as a task gets done, there’s not a right or wrong way, as long as you keep the patient safe.

BLOOM: So you’re talking about being flexible to preferences families have?

Caroline Ivorra: Yes, learning to be flexible. At school you learn from a textbook and then you work with real life and say: ‘Oh well, that’s not what the textbook said.’ There are little things about how to dress or seat a child in their chair or their routines that make a world of difference for a family.

BLOOM: You’ve been here almost four years now.

Caroline Ivorra: I came directly out of nursing school.

BLOOM: Has the work changed you as a person?

Caroline Ivorra: It’s opened up my eyes a lot, I think, to this world of possibilities. I believe that now, working here I really believe that. I see what these kids can do and I’m like ‘Wow!’

BLOOM: What would you tell a nurse just starting here?

Caroline Ivorra: That it’s hard. I wouldn’t say it’s an easy job, or that it comes easy. But with patience and an open mind you’ll get through it and you’ll get the satisfaction and the gains. I was super scared when I first started.

BLOOM: If you could change one thing in the health system, what would it be?

Caroline Ivorra: To have more staff so the clients could have more one-to-one. You have three patients and you might need to be more with one child than the others because of the care required, or because a family member is at the bedside. So I would want to have three of me so I could be with each family all the time.

BLOOM: How did your parents’ nursing influence you?

Caroline Ivorra: My dad was a scrub nurse at Toronto General and my mom worked here. But they’ve also done work with Doctors Without Borders and the Red Cross and travelled. For three years they worked in Northern Ontario on a reserve. I think seeing all of those opportunities, and everything they’ve done, drove me into the field.

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Moving from bedside to clinic broadens a nurse's perspective

By Louise Kinross

Nancy Campbell (left) has worked as a registered practical nurse at Holland Bloorview for 15 years. She was hired straight out of nursing school, and worked the first 12 years with children on our complex continuing care (CCC) unit. She then moved to outpatient services to work in our hypertonia, spina bifida and Rett syndrome clinics. Rohan Mahabir suggested Nancy for our candid interviews on what it means to work in children’s rehab.

BLOOM: How did you get into nursing here?

Nancy Campbell: I love children. And this is where I landed after nursing school. I was very interested in pediatric nursing and when I had the opportunity to come and interview and was offered a position, I came and I never left.

BLOOM: What does a day look like for you?

Nancy Campbell: Most of my time is spent in our hypertonia clinic, working with children who have increased muscle tone. They may have stiff muscles or uncontrolled movements that make it difficult to walk or sit comfortably in chairs.

We do a nursing assessment where we ask about their general health and their reactions to any tone medications or interventions, to see if what we’ve recommended is working. Laurie Liscumb (photo right), who is the other nurse, and I are the point people for organizing follow-up appointments, funding or casting and providing education about interventions and medications.

BLOOM: What’s the greatest challenge?

Nancy Campbell: When we see children in pain. Working within this system means that there’s often a wait to fix that. For example, there will be a wait for a child to get an appointment for Botox injections at SickKids.

BLOOM: So it’s the moral dilemma of seeing pain and not being able to relieve it?

Nancy Campbell: Exactly. Wishing you could help immediately. We also see the impact that pain has on entire families—on siblings and parents and sleep and relationships.

BLOOM: How do you cope with that?

Nancy Campbell: By talking to my colleagues. And to families. Even if we can’t offer the immediate support of the intervention, I hope speaking about pain and going through the journey together helps.

BLOOM: What do you love about your job?

Nancy Campbell: I love the people. I love the team I work with. They’re super supportive and everybody really does want our clients to have the best life they can have and we’re all working towards that goal. You see it in every decision.

I love the families. Sometimes you look at a situation and think ‘If that was me, I don’t know if I could pull myself out of bed in the morning.’ But these families try their best to keep it all together. They’re resilient.

BLOOM: What have you learned from families?

Nancy Campbell: It’s really important to families that you see them as families, and not just as caregivers to a disabled child. When I moved from working with inpatients to outpatients, I realized that these are all families with their own lives happening elsewhere, and it’s not just clinical. You have to figure out how a clinical assessment will fit into a particular family’s life. Will it work and have meaning for that family, or not?

BLOOM: I didn’t realize you’d worked on CCC. What were the challenges there?

Nancy Campbell: Helping families cope with grief when their child suffers a catastrophic injury is very difficult.

BLOOM: How do you support those families?

Nancy Campbell: By trying to read the situation, to know whether a parent was ready to have a discussion about it, or needed space. I always tried to make my interaction with the child positive, so I could role model that you could still have a positive relationship with this beautiful little child.

BLOOM: What did you love about working on CCC?

Nancy Campbell: Developing long-term relationships with families. It was developing that trusting relationship where families felt safe having you with their child—and especially when they couldn’t be there.

BLOOM: How did you make the decision to move to outpatient nursing?

Nancy Campbell: I love bedside nursing, so I was hesitant when the opportunity came up. But I was looking for a new challenge with my career and new learning opportunities. I do miss the hands-on work with inpatient clients. In outpatients, you’re doing more interview-type assessments. You’re not helping someone have a shower.

BLOOM: What did you learn in your new role?

Nancy Campbell: I had worked with a lot of children with cerebral palsy on the unit, but moving into outpatient work expanded my knowledge about treatment options.

It’s too bad we don’t have a better meshing between inpatients and outpatients, because what we could learn from each other would definitely improve care on the units.

BLOOM: Do you mean in terms of treatments or your attitude to nursing?

Nancy Campbell: Both. If I went back to inpatients now from a more therapy-focused second floor, I would change the way I nurse. Knowing that these families go home and have their own lives would encourage me to empower the families more.

Sometimes I think we felt on CCC we were helping families by taking over the care of the child, because we knew the parents were stressed and tired. But in some ways, that’s disempowering, because maybe they felt they couldn’t do it as well, or we didn’t trust them to do it, or that we were watching and they felt judged.

I’ve learned a lot by seeing families take care of their kids at home. If I was on CCC now, I would help more by doing less. I would let the families figure things out with support. I’d encourage parents to really be in charge of care and encourage the kids to do as much as they can for themselves. I wouldn’t be so worried about time constraints.

BLOOM: What kind of constraints?

Nancy Campbell: Like a child needs to learn to brush his teeth, but the school bus is leaving, so you do it quickly for him.

BLOOM: Anything else?

Nancy Campbell: There are so many opportunities to share knowledge between inpatients and outpatients. So if I have a child with spina bifida on the unit and I know there’s an expert in spina bifida downstairs, I should reach out. Too often we work in isolation on the units. We need to remember to engage with the rest of the services in the hospital.

BLOOM: What do you think prevents that?

Nancy Campbell: It’s not knowing what we don’t know, and not fully understanding the depth of knowledge that our colleagues possess.

BLOOM: What advice would you give a nurse just starting out at Holland Bloorview?

Nancy Campbell: To be open-minded and creative and to let families help drive the decisions you make. To figure out what the family’s vision of their child is, and help them get there, rather than putting your vision of what 'should' be onto the child.

BLOOM: I guess that involves a lot of listening.

Nancy Campbell: Yes. And it’s not about performing tasks, it’s about quality of life. If you perform a task but the child is no happier or healthier at the end, then the task isn’t of any value.

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'He's a pretty normal dad'

By Louise Kinross

“When I was seven, I asked when I was going to get my chair,” says Elijah Wangeman, 14 (above left), in an unedited version of My Dad Matthew. The six-minute film is about Elijah’s life with his dad Matthew (right), who has cerebral palsy, uses a wheelchair and communicates by moving a pointer on his helmet to letters on a board. For Elijah, Matthew is “a pretty normal dad.” So as a child, Elijah says he imagined that he too would use a wheelchair when he got older. Matthew is a professor in disability studies at Northern Arizona University. That’s where Matthew met filmmaker John Schaffer, when John was studying special education. On Thursday Feb. 23 at 9 p.m. Eastern time, John is live streaming the world premiere of his film My Dad Matthew on Facebook. John says he hopes viewers take away “a new perspective on disability.” BLOOM interviewed Matthew by e-mail.

BLOOM: What do you teach at Northern Arizona University and why?

Matthew Wangeman: I teach disability studies and I absolutely love it! My job is to essentially challenge how my students think about disability. In fact, we developed the disability studies minor about 10 years ago to combat what people with disabilities and their family members said was the greatest barrier they faced in Arizona—the attitudes of others towards people with disabilities. I really feel I’m doing my life’s work at Northern Arizona University. What keeps me going is when I hear my students talk in the senior seminar course that I co-teach—it’s like they are completely different people. They really think about disability as a problem with society not being willing to really embrace people who are different. To me, that is how you begin to change society for the better for people with disabilities.

BLOOM: What was the greatest challenge growing up with your disability?

Matthew Wangeman: Probably my greatest challenge was trying to convince my Mom that I really needed to go to college! I somehow knew education would be my only key to even have a chance to have control in my life. I always say I have been extremely fortunate in my life and often I think my path could have gone in so many bad directions. I could, and probably should, write a book about growing up in two residential schools for crippled children.

BLOOM: You seem to have a very open, humorous, joyful outlook on life. Do you have a philosophy that shapes the way you live?

Matthew Wangeman: Yes, I love to laugh and I love to make people laugh. I often say I’m a ‘sit-down’ comic. I just think with humour people open up more and they’re open to understand and really think differently about a subject. Life is way too short to live life too seriously and people just like being around funny and happy people.

BLOOM: You say attitudes can be most ‘disabling.’ Can you give us an example?

Matthew Wangeman: I have never had a job that pays me for what I am truly worth. I really feel that is because of attitudes of others towards me, because I have a significant disability. I went to one of the best universities on this planet and that was UC Berkeley. I even earned a masters of city planning and was in a PhD program at Berkeley that I didn't finish. Even if I had finished my PhD, I don't think it would have made a difference because of people's attitudes towards me as someone with a significant disability who can't orally speak. This will always frustrate me.

BLOOM: You have a significant physical disability but have achieved great success academically. How can we break through stereotypes about people who have an intellectual disability? Even in the disability community, intellectual disability is stigmatized?

Matthew Wangeman: Yes, this a problem and it shows people with disabilities are just as guilty of discrimination against other people with disabilities. We must practise what we preach, but humans are flawed people and in order to feel good about ourselves it seems we must put down other people. I really don't know how we fix it, but we must continue to confront this ugly problem.

BLOOM: I would like to see us change the way we view human value—so we don’t base it on what a person does—but see it as inherent to each person, simply by virtue of being human. Do you think people should have to ‘earn’ their value by being productive in a conventional way?

Matthew Wangeman: I happen to think the value that we place on people as part of a capitalistic society is probably one of the most harmful things we do to people with significant disabilities. People should never be judged by how much money they make, because it's so arbitrary. I love sports but it's ridiculous that someone would make $5-10 million dollars for hitting this round ball with a bat 400 feet! It makes no sense.

BLOOM: Your son Elijah provides a lovely perspective to the story. How have his insights impacted your thinking?

Matthew Wangeman: Probably what my son has taught me the most is disability to him is typical. I am not saying that he is free from discriminating against people, because we all discriminate, but I do think he is much more open to other people who are different and in that way we can learn from him.

BLOOM: What advice would you give to parents whose child has significant disabilities?

Matthew Wangeman: Just believe in your child and always question everything!

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Dress rehearsal

By Louise Kinross

My son is taking part in an interactive play called What Dream It Was at the Miles Nadal Jewish Community Centre this weekend. He is the flying jokester (above), one of the creatures in a magical forest inspired by Shakespeare's A Midsummer Night's Dream. He will be part of a shadow performance and lantern parade, assist at the potion-making station and sneak around to stick messages on people's backs (the jokester part). 

This is a fabulous arts program that was provided free to participants aged 18 to 30.

It's a partnership between the Ahuri Theatre, the Bottom's Dream Collective and Miles Nadal JCC. 

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With mind-reading device, 'locked-in' people say they're happy

By Louise Kinross

Patients with no control over their bodies answered questions with a brain-computer interface that learned to read their mental “yes” or “no” in a groundbreaking study in PLOS Biology.

The four paralyzed patients with amyotrophic lateral sclerosis (ALS), who are described as being "locked-in," learned to answer personal questions like “You were born in Berlin” and open-ended questions like “Are you happy?” by thinking “yes” or “no.”

The scientists were able to detect distinct changes in blood oxygen levels that corresponded with each person’s “yes” and “no” response using near-infrared spectroscopy. The device, which sits on the person’s head like a swim cap, emits near infrared light into the brain and records returned light, tracking changes in blood flow that relate to brain activity.

Patients completed between 20 and 46 sessions over many weeks with an accuracy of above 70 per cent with questions with known answers, like “Your husband’s name is Joachim.” Over time the system gets better at reading each person’s brain signals.

In what was reported in news stories as a surprise, three answered “yes” to “I love to live” and “Are you happy?” The fourth patient wasn’t asked these open-ended questions because her parents said her emotional state was fragile.

Lead investigator Niels Birbaumer, a neuroscientist at the Wyss Center for Bio and Neuroengineering in Geneva, said the patients and their families were “excited” to communicate after as many as four years of silence, and to know that their loved ones wished to remain alive on ventilators.

In an email interview, BLOOM asked Dr. Birbaumer 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.”

He said the findings indicate that people are much more able to adapt to disability than we expect.

In the paper, the scientists wrote that the three patients who were asked questions about quality of life, like "Are you happy?," repeatedly responded "yes, indicating a positive attitude towards the present situation and towards life in general."

The patients all lived with their families at home.

Photo by the Wyss Center

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'Passport' helps parents plan move from hospital to home

By Louise Kinross

A parent who spent 16 months at her daughter’s bedside at Holland Bloorview has given a gift to other parents of inpatients.

The Transition Passport is a binder that helps parents organize their child’s health information and plan for the extensive equipment and supports they may need to move back home.

The idea came from Sadia Qureshi, whose daughter Zoya had been a healthy six-year-old until she woke one morning seizing. After two months in acute-care, where she continued to seize and was intubated, she came to Holland Bloorview.

“We had no idea where we would go from here, that there would be life after Holland Bloorview,” Sadia says.

The passport organizes what parents need into sections: checklists of equipment and medication; funding sources and school planning; a place to record important dates, keep therapy schedules and take team meeting notes; and a holder for business cards for key staff who work with your child.

“As a parent who had never been through this, I didn’t know what equipment we would need at home, or even that funding was available,” Sadia says. “I didn’t know that schooling for Zoya would be a choice. I didn’t know it was possible to live in your home with support. The passport has checklists you can go through with your physiotherapist or nurse or social worker to help you plan according to your child’s needs.”

The process of moving home with Zoya was “very difficult, long and not easy,” Sadia says. She often didn’t realize that she needed certain things until she took Zoya home for short trial stays. “It’s hard to know what to expect. The passport will help parents pre-plan, so it won’t be as stressful or take as long.”

Sadia worked with a discharge steering committee at Holland Bloorview to bring the binder to life.

“Being part of this group was a wonderful experience,” she says. “I shared everything—what was great about our transition experience, what we need to work on, and what I think will be most appropriate for parents.”

Anna Marie Batelaan, social worker on the brain injury rehab team, says families “are finding it extremely useful as a way to keep organized and keep all of their documents from acute care and here in one place. For a lot of them the health care system is new and foreign. Many families come in with a shopping bag full of reports and they have trouble laying their fingers on what they want to show you. This binder gives them a framework for keeping it all in one place. They keep reports, home programs and medication lists in there. It’s one location where you can put everything. I have families who have moved home who continue to use it as outpatients, so they don’t have to keep track of everything in their own head.”

The Transition Passport team received the Sheila Jarvis Impact on Client and Family Centred Care Award for 2016. You can download your own copy or ask your social worker for one.

“Our goal is that this will assist families in partnership with their clinical team—not just with organizing information, but with helping them prepare for meetings and ask the questions that are important to them,” says Elaine Widgett, interim senior director of inpatient rehabilitation.

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