What Barbara Turnbull said about rehab and grief

By Louise Kinross

In 1983 Barbara Turnbull was shot during a robbery at a convenience store where she was working a night-shift as a Grade 13 student. Last Sunday, The Toronto Star, where she worked as a reporter, wrote that she had died at age 50 as a result of complications from pneumonia.

Barbara gave a fabulous talk at Holland Bloorview in 2002 about her 18 months in rehab and how she learned to navigate the world with quadriplegia and a lot of technology. I wrote about it in our staff newsletter at the time.

What jumps out at me as relevant today was a comment she made about professionals not allowing her to express her grief. "At one time, when I was going through the worst depression, a nurse said 'If you're not careful, people aren't going to want to be around you,'" she recalled. "It had such a devastating impact on me, because I felt I had to be upbeat for people or else I'd end up alone."

Holland Bloorview scientist Barbara Gibson spoke to BLOOM recently about how therapeutic environments may send the message that negative emotions are to be repressed. "Sometimes patients are made to feel that they can only express positive emotions with professionals," she said. "You know, 'we're all cheerleaders here.'"

I thought that was an important message to keep in mind.
What Barbara Turnbull told us she found most helpful during her rehab was talking to people with acquired disability who were further along in the journey and could encourage her and offer practical advice.

Photo by Toronto Star photographer Lucas Oleniuk

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A circus performer adapts to life with paralysis

Carolyn Pioro talks candidly about the physical and social aspects of adapting to quadriplegia. Carolyn mesmerized everyone with her honesty and grace. Thank you Carolyn! Louise

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Violin solo: 'It's not something I thought I'd be able to do'

We've written about Eric Wan (above) before, a graduate student in engineering at Holland Bloorview who helped develop the Virtual Music Instrument, a software that allows children who can't manipulate conventional instruments to make music. Eric, who was paralyzed at age 18, will play violin -- with head movements -- with the Montreal Chamber Orchestra tomorrow. Watch this YouTube video and read more in this Montreal Gazette piece.

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Eric sees the beauty of technology

Eric Wan (above right) has lived a life few can imagine. At 18 he was a healthy high-school student who excelled at computers and violin. Three days after a routine measles vaccination he was rushed to hospital unable to move and struggling to breathe. For four months he laid in intensive care, where he was diagnosed with transverse myelitis, an inflammation of the spinal cord. He was paralyzed from the shoulders down and needed a ventilator to breathe. The only possible cause doctors could point to was the measles shot. He was transferred to a long-term care hospital for two years of rehab.

Last month Eric graduated with a computer-engineering degree from the University of Toronto after winning an award for his thesis. Since 2005 he's been developing technologies for children with disabilities as part of his training at Holland Bloorview. He starts graduate school on scholarship in the fall. “He’s among the very best software developers I have ever encountered,” says Tom Chau, Canada Research Chair in pediatric rehab engineering and Eric’s thesis advisor (in photo left). I was delighted that Eric agreed to talk with me.

BLOOM: What was your life like before you became paralyzed?

Eric Wan: I lived a very regular life, just like any other teenager. I loved computers and spent a lot of time practising violin and playing in my school’s symphony orchestra.

BLOOM: What was most challenging about acquiring significant disabilities as a teenager?

Eric Wan: There was no challenge initially because I didn’t think of myself as being paralyzed for life. I thought I would get better, or there would be some kind of cure. For the four months I was lying in bed in the ICU, my main thought was of boredom. It wasn’t until I got to West Park for two years of long-term rehab that I realized the paralysis would be for life. In fact, when I first arrived, the staff thought I might stay in their facility for life.

BLOOM: What happened when you realized you wouldn’t get your mobility back?

Eric Wan: I had periods of depression and anger that weren’t easy to overcome. The main reason I was depressed was because I couldn’t do anything at all. I was completely immobilized physically. It was a matter of taking very little steps, one day at a time. At first I couldn’t even get out of bed I was so sick. Then my goal was just to get out of bed and sit in the wheelchair for an hour.

BLOOM: How did you get through those dark times?

Eric Wan: It was a struggle between depression and the motivation to go forward. Something that helped was when the therapist at West Park gave me different types of assistive devices. I remember the first time I was able to activate a button to turn on the phone. I was so happy. To anyone who’s healthy, picking up a phone is nothing at all, but for someone who’s paralyzed and unable to do anything, turning on the phone was a huge step forward.

BLOOM: How would you describe your quality of life now?

Eric Wan: I feel I’ve come a long way since I was paralyzed, and I’m quite happy about that. But there’s still a long way to go in terms of my academic pursuits and other aspects of my life.

BLOOM: Such as?

Eric Wan: Right now I live in subsidized housing in a unit that’s adapted for people with disabilities and the building has attendant care. I hope in the future to purchase my own place – maybe a condo – and hire my own attendants.

BLOOM: When you can’t use your hands, how do you control your wheelchair and use a computer?

Eric Wan: I use a sip and puff (straw) system of four commands to control the directions of my wheelchair: a hard sip, a soft sip, a hard puff, and a soft puff. I use a head-tracking device to control the mouse cursor on my computer (Eric has a tiny reflective sticker on his glasses. When he moves his head, the computer translates it into mouse movements and clicks.) I also need a way to type so I use an onscreen keyboard.

BLOOM: But you've just got one reflective sticker. Is that what you use to type each individual letter?

Eric Wan: Yup. It would be like comparing 10-finger typing to one-finger typing. It's a lot slower. Word-prediction helps speed it up.

BLOOM: How are you able to get all of your studies done?

Eric Wan: It takes a lot of planning – and the use of technology.

BLOOM: I know one of the main projects you've worked on in the Bloorview Research Institute is the virtual instrument. This software allows children who can’t manipulate conventional instruments to play music. Why is it important?

Eric Wan: I feel playing music is important to every child because it helps with the creative side of thinking. To be able to introduce music to a child who's not able to do it at all, and open up that possibility, is very exciting.

BLOOM: How has quadriplegia changed you as a person?

Eric Wan: I never thought I would be having this experience. Being in a wheelchair is quite a different way of seeing things. While it creates physical blind spots, it also gives me insight into the importance of assistive technology. The former causes me to run over countless number of toes. The latter enables me to appreciate the beauty of every piece of technology around me, to an extent not many other people do.

BLOOM: Would you have become a rehab engineer if you hadn’t become paralyzed?

Eric Wan: Not at all. In the earlier years of my undergrad studies I tried to think of ways where I could design devices to improve my own life. That got me into the mode of thinking about designing assistive technology for other people. Tom is a large part of the reason I got interested in research in this area. He helped me discover that I could apply my skills to improving the quality of life for children with disabilities. Tom’s research enabled children to say their first words, to access the computer for the first time, and to experience the joy of video-game playing like other children. It reminded me of the first time I was set up with an adaptive switch, months after I was paralyzed. I was ecstatic about being able to turn on a phone. The math here is very simple: increasing one’s ability from 90 per cent to 100 per cent gives 111 per cent times the joy, whereas increasing from 0 per cent to 10 per cent gives infinite times the joy (100/90=111% refers to the ratio of improvement, hence the joy 10/0=infinity, because anything divided by zero is infinity). This is the amount of excitement I experienced being given the technology to do things I otherwise have no capability of doing. It’s the type of excitement I hope to deliver through my career as an engineer.

BLOOM: What qualities have enabled you to cope with your situation?

Eric Wan: Patience is a big factor. Before becoming paralyzed I wasn't as patient as I am now.

BLOOM: What are some of the barriers to people with disabilities leading rich lives?

Eric Wan: I think a major barrier is moving from being in rehabilitation to integrating back into the community. This is a huge step. When you're living in a facility the thought of living independently, where you'll be alone most of the time, is very scary. It's not that scary once you've experienced it, and now I love it. I was part of the Gage program where I was trained to live independently. A lot of things needed to be put in place before I could live on my own: I had to be able to move on my own in my power wheelchair; I needed attendants who were trained with ventilator care; and I needed environmental control units to access the phone or control the computer and lights.

BLOOM: In terms of barriers, what about people's attitudes?

Eric Wan: I don't put much focus on that. I go to school and once in a while I see students staring at me. Maybe they're curious, or maybe they feel I shouldn't be there. I don't put much thought into it because it won't change anything. I focus on where I want to go and my purpose in being there.

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Does physical disability make a parent less fit?

There’s been a lot of discussion in the blog community this past week about the rights of disabled parents to care for their own children.

The Chicago Tribune has been following the story of Kaney O’Neill, a 31-year-old woman with quadriplegia who’s being sued by her ex-boyfriend and the father of their son Aidan, five months, for full custody, charging that her disability “greatly limits her ability to care for the minor.”

O’Neill – who has no use of her legs and limited use of her arms – worked with rehab staff for months before Aidan was born to build her physical strength and put adaptive baby equipment in place. She’s never alone with her son and has the assistance of a full-time attendant, her live-in brother, a mother who helps on weekends, and a trained service dog. A good overview of the case can be found at the New York Times’ Motherlode blog.

Still, headlines asked: Can a quadriplegic woman be a good parent?

It reminded me of a column by a single mom with cerebral palsy we ran in BLOOM eight years ago. Lisa Jones, then a health planner, was raising two daughters aged four and 10 (see photo above). She used a power wheelchair and had minimal use of her hands – perhaps not unlike O'Neill's level of physical function. This made it challenging to lift her daughters when they were babies, to support them as they began to walk, or to push a stroller. 

How did she do it? I wondered.

Lisa addressed the practical challenges of caring for her daughters' physical needs in this piece below, which I think is as relevant today.

‘I know that I’m raising really good girls’
By Lisa Jones

My philosophy is that even if I wasn’t disabled – and maybe because I am – it takes a whole village to raise a child.

My name is Lisa Jones and I’m raising two girls – Laural, 10, and Emily Grace, 4 – on my own. I think my role as a parent is to guide my daughters and help them along, but my family and friends also play a huge part. When parenting with a disability, I think it’s important to embrace the fact that we are all interdependent and we each have different skills to contribute in raising happy, healthy children.

I have cerebral palsy and work as a health planner. I use a power wheelchair and have limited use of my hands.

When I was growing up, I always knew I wanted to have children. I knew I had a lot of stuff to pass on to a child and that I could help a little person become a really good individual. I wasn’t exposed to the common stereotypes that suggest a person with a disability is somehow less of a parent, so it came as quite a shock when some of my relatives expressed these sentiments after I became pregnant with my first child.

In spite of this opposition, I believed in myself, and since my children were born, I’ve rarely dealt with attitudinal barriers. The greatest challenges I’ve faced involved caring for my girls physically during their early years. Because I have poor fine motor skills, I couldn’t easily lift my children when they were babies, support them as they began to toddle about, or push a stroller.

I met each of these challenges through problem-solving, trial and error and the fervent belief that I would be able to work something out. Many of the adaptations I came up with were based on simple ideas. For example, when Laural was born, my father built a crib with a side that slid away so that I could wheel right up to the crib. The crib was at a perfect height so that I could feed and change her there.

In order to lift Laurel, I would roll her up in a receiving blanket, then grasp the sides of the blanket and pull her onto my lap.

I couldn’t push a stroller, so in order for us to go for a walk, I figured out a way to carry Laural – who was then seven months – on my lap while I pushed my wheelchair. I made a padded apron that I would wear, and which Laural could lean against. It included a fabric strap that fit around Laural’s chest. Then I had my wheelchair repair store make an extra long seat belt that fit around Laural and me.

When Laural was first walking, I took her out wearing a harness with a long strap that I held. I would take her to enclosed playgrounds so that she could run freely without any danger of running away.

What I have found, over the years, is that my daughters are incredibly resourceful, adaptable and safety-conscious because they know that I can’t rescue them like other parents can. I’ve noticed that able-bodied parents are very protective of their children. I can’t be, so my children have become very good at self-managing. They understand – at a level far beyond any other child – that if they take a physical risk, they’re on their own. I support them by giving them the confidence that they can figure out situations and by allowing them to participate in decision-making.

For example, I remember when Laural was about 18 months, she climbed up on the back of our couch and began inching along the narrow top. I said “You better be careful, because Mom can’t get you down, and if you fall, you’ll really hurt yourself.” I couldn’t scoop her up like other parents, all I could do was sit beside the couch and talk her through it. I could see her reasoning it out, figuring out whether she could move a little further, then deciding it was a bit too scary. She pulled her legs back over the front and was able to fall safely onto the couch.

What has made the difference in my ability to raise my daughters has been the support of my family and friends. Transportation is a big issue, as I don’t drive. One of the ways my parents help out is to drive my children to school and to other activities. One of my friends picks my kids up after school and that’s her contribution to my “little village.” I do things for my girlfriend’s children in exchange, such as helping with French homework. It’s that interdependence with other people that is so essential in raising children. Everyone has different skills, but we share what we can give.

During Emily Grace’s first year, I received five hours of attendant services each day. Today, I receive two on weekdays and three to four on the weekend. Our attendants primarily meet my personal care, grocery and cooking needs, although they do help the girls with small things like braiding their hair. When the girls were young, the attendants spent more time helping them with bathing and dressing.

When Laural was a baby, it used to bother me that I couldn’t do everything for her. I missed the feeling of being able to lift my baby up easily to my shoulder, or of being able to dress her when she was tiny. What I’ve learned is not to sweat those things. I focus on what I am able to do, and I do it as often and fully as I can. I know my kids won’t grow up with a complex because I didn’t wash their hair when they were three months old, or because someone else tied their shoes. Regardless of who’s braiding their hair, they know that I’m their mother. They come to me when they’re hurt, when they want direction or when they want a hug.

I’ve always been open and honest with my daughters about my disability and talked about why I do things differently. In turn, I’ve also given them the licence to do things in their own way.

I think my disability has given my children the ability to be hugely independent, adaptable and able to reason for themselves. It’s also given them a strong sense of social justice. Laural and Emily Grace don’t see disability or diversity because they just accept that everyone does things differently.

As a parent, I’ve gained a real sense of peace, fulfillment and purpose. I know that I’m raising really good girls – not in terms of them being well-behaved, but in terms of them being good people at their core. I hope that in hearing my story, parents of children with disabilities will see that their child can have a full, rich life – one that might even include children.

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