Mama and Dad

By Louise Kinross

Stephen Dustan is a 23-year-old rehab services student doing a placement at Holland Bloorview. He works with life-skills coach Sarah Keenan, meeting youth in the community to help them set independence goals. Stephen knows our hospital intimately. As a child with cerebral palsy he attended our integrated kindergarten program. Since then he’s been an inpatient and outpatient; a Spiral Garden camper and volunteer; a high-school co-op student in our integrated kindergarten (working with his old teacher Paul Alcamo); and he now works part-time as a recreation assistant with our inpatients. One of our family leaders suggested we interview him.

BLOOM: Why did your parents choose our kindergarten for you?

Stephen Dustan: I think what attracted them most was the fact that I would have therapy and be in a place that was equipped to handle my needs. They loved the idea of it being integrated with community kids because that gave you such important skills of being able to articulate your disability to able-bodied kids, which is something you’re going to do lifelong as a person with a disability.

BLOOM: What do you remember about our school?

Stephen Dustan: I remember having my disability explained in a way that I understood and in a way that I could explain it to other kids. My 'go-to' is that my brain got cut-off from oxygen at birth, damaging the way my muscles communicate to my brain. So my muscles are tighter and don’t grow properly like normal kids’ muscles do.

BLOOM: Did that explanation satisfy most kids?

Stephen Dustan: They often gave me a blank stare. It kind of went over their head but it kind of sunk in. I found my willingness to explain it beneficial. Kids are just curious, they’re not mean by nature, and if you provide them with an answer, they usually were pretty receptive and understanding.

BLOOM: What was it like to move to your local school for Grade 2?

Stephen Dustan: The moments when I would feel different from the class were when everyone was getting ready for recess, especially in winter, and it would take me longer, so I’d have less time outside to play. Getting an educational assistant in place for me was difficult and took some time. But I was good at self-advocacy and stating my needs. So I asked whether I could get ready five minutes earlier than the class. My disability was never an issue for me socially. I have an older sister and I had the support of her and her friends so the kids in my class gave me respect. I always had friends to confide in and rally around me. It wasn’t until Grade 8 that I experienced some bullying.

BLOOM: What happened in Grade 8?

Stephen Dustan: I did my last year of elementary school in a new school that opened in my neighbourhood, so I was starting again without friends. I fell into a group of friends that were kind of mean to each other and very political. I did experience some bullying and I definitely can relate to the isolation that that causes: the feeling of not wanting to go to school; hearing whispering and thinking it’s always about you. I told my friends and parents but I never got the authorities involved. I waited it out until high school and it got a whole ton better then. I remember on the first day of high school I was really nervous and I came through the doors on my scooter and there were three of my old friends from elementary school and instantly I knew that it was going to be fun.

BLOOM: What is your university program like?

Stephen Dustan: I found this York/Seneca rehab program where you get your BA in psychology, which I now have, and then a certificate in rehab services. It’s a general program that covers all aspects of rehab. What I like most is that I had the opportunity for field placement.

BLOOM: What did you do as a placement?

Stephen Dustan: Two years ago I worked with The Centre for Dreams, which is a day program for adults with developmental disabilities in Markham. I worked with clients on social goals, life skills, self-care and vocational skills. I had never worked with clients with developmental disability and it was a really great experience. I got a new appreciation for how honest people with developmental disability can be, how kind they can be, how open hearted they can be. It was a privilege to work with the clients and the staff.

BLOOM: What are you doing in your placement here?

Stephen Dustan: I’m in therapeutic recreation and life skills working in the community with Sarah Keenan. I’m learning about the life skills process, the different ranges of goals that clients set and how to achieve these goals. It’s very solution-focused.

BLOOM: Have you found anything about the work surprising?

Stephen Dustan: I knew I would like it, but the amount I like it surprised me. Life-skills coaching is definitely something I could see myself doing and having this experience with Sarah helps me in my job as a casual staff on the inpatient unit being a recreation assistant. I can apply what I’m learning to both situations.

BLOOM: What is your favourite part of the work placement?

Stephen Dustan: I love the element of counselling and coaching and being a part of someone’s development. My future goal is to pursue a master’s in social work and get into counselling.

BLOOM: Does it seem unusual to you that you spent so much time here growing up and now work here?

Stephen Dustan: Holland Bloorview was such an integrated part of my life. I never had any negative feelings around this place. For example, I didn’t connect it to the more traumatic elements of my recovery after my surgeries when I was an inpatient here. It was physically painful to do rehab, but it wasn’t emotionally painful or painful in a way that would make me not want to come back.

BLOOM: How would you describe Holland Bloorview?

Stephen Dustan: It’s incredibly unique and alive. For me it’s been a place of recovery and opportunity and it still is. There is something magical about this place, especially the Spiral Garden program. I went there when I was little and I later volunteered there. They’re phenomenal at putting this element of imagination, of magic, into a place that traditionally shouldn’t have any. From my time working at Spiral Garden and on the inpatient unit in general I’ve come to see the amount of work and organization that go into creating that recreation hour with the clients gardening. How many people pour their heart into what they’re doing, the amount of organization and heart and energy it takes.

BLOOM: Has your view on disability changed over the years?

Stephen Dustan: When I was a kid I always had this idea that you’re not disabled, you can do anything a normal kid can do it will just be a bit more challenging or you’ll do it differently. That helped me tremendously as a kid, but now as an adult I can recognize that it’s not a matter of me not being disabled. Disability can be an identity, a social identity. So much of my strength has come from 'being disabled' that I no longer see it as a weakness or something you have to distance yourself from or deny. It’s something you can accept and in some ways celebrate.

BLOOM: What are some strengths that have come from your disability?

Stephen Dustan: I think there’s a depth, an internal space that I have to hold things, to connect with people, to understand people’s struggles and emotions. Because I’ve been placed in intense situations that most people don’t experience, I’ve got insight into where strength and hope come from when it’s really dark. I know that that light is inside everyone and you have to find it and if you can relate to it in an authentic and real way, you can make that light brighter in yourself and in someone else.

BLOOM: So disability isn't something you need to 'overcome?'

Stephen Dustan: No. I’ve done a few disability studies courses that opened my eyes to the idea that disability is really a matter of social barrier and not a matter of something being biologically wrong with a person. It’s not about overcoming tragedy. It’s more about transforming tragedy into triumph, but not in the sense that you move past it or get over it. You accept the disability with such wholeheartedness that it no longer is something that impedes you on your path.

BLOOM: What was it like to come back as a placement student in the integrated kindergarten you had gone to as a young child?

Stephen Dustan: So many memories that were foggy came flooding back. Paul is exactly the same in every way I remember him. He still gets the most stoked about dinosaurs of anyone I know. I remember as a student I knew every dinosaur’s name and now I can see why I was so passionate about that topic—because Paul was.

BLOOM: What impact do you think you had on the kindergarten students when you came back?

Stephen Dustan: I hope they can see themselves in me and we have that connection. It’s the idea of 'Hey, I made it, I’m doing well and you can too.' I hope they take from my example that they too can be a part of this world in a real and authentic and powerful way. I try to remind myself that I’m a role model and to hold myself accountable to that.

Here's a photo of Stephen as a co-op student in the integrated kindergarten. By Paul Alcamo.

By Louise Kinross

Empty and fragile is how I've felt the past couple of days, like a china cup with no hot tea.

Full and empty, fast and slow. They're descriptors for how we feel, but often they're misleading: we may think fast leads to full, to more, to something substantial, when it doesn't, necessarily, at all. Sometimes we're so busy trying to make our cup full that we don't even notice what we're filling ourselves with.

Until I broke my arm three weeks ago, everything was fast. I was in a flurry of activity, at work and home, trying to squeeze more and more into each day. The day I broke my arm was Saturday. Up early, trip to the club, Kumon with the boys, lunch at Mocha Mocha and then a few hours to myself. I felt stressed but I headed to the Eaton's Centre anyway, racing from one end of the mall to the other, floor by floor. I can't say it was fun, but perhaps I felt productive. I did get a sports bra.

When I got out of the subway on the way home I passed my favourite boutique. Even though I was late I dashed in, leaving with a tunic on sale. It was almost 6 and we had tickets for a show at 7. From above, I must have looked a comical figure, rushing down our dangerously steep street in my treadless 'indoor' boots, connecting with ice and then sailing back, feet upended, till my right hand touched ground.

I wouldn't be needing the sports bra anytime soon.

I think I'd mistaken fast for full, as if by doing things quickly you amass more, are more. But more of what? I never thought about the contents.

At first I thought I'd just compensate, be really 'good' at having a broken arm. I'd follow the doctor's orders, take my pain meds, get by at work by typing with my non-dominant hand.

What I wasn't counting on was a lot of pain after the arm was casted.

"Why does my arm hurt so much?" I'd ask D'Arcy. "I'm taking the meds."

As the days turned to weeks it became: "What is wrong with me? What am I doing wrong?"

I didn't like being reminded of my weak spot, my frailty.

And I didn't like thinking about how it must have felt for my disabled son Ben to be in a full body cast two years ago. Then I'd replay the scene of when he refused to get back on the operating table, two weeks after his first hip surgery. The hardware had pulled out of the bone, so he had to have the same operation a second time. He had to be forced, fighting, onto the table, with me saying the most inane things like: "Don't you want your leg to get better?" During the tussle the anesthetist's cold, heavy stethoscope swung forward from her neck and hit him, hard, in the head.

At work I couldn't continue to produce at my pre-fall rate. I went to visit my occupational health nurse. We talked about how my workload was going to change, how I'd have to slow some things down, put others on hold. She suggested that my expectations might be the biggest barrier, noting that the first thing I told her when we met was that I was a speed typist. "Louise, " she said gently. "One of your hands is immobilized."

I'd been operating in fast mode, but now I was SLOW, SLOW, SLOW.

I decided to take a week off, to rest up and give myself time to heal. I slept a lot and listened to the radio. I couldn't drive but I ventured out once a day, hobbling around with my eyes peeled for ice. I waited for the return of family members and their helping hands.

"What happens if you're hurt and you don't have anyone to look after you?" I asked D'Arcy, imagining how I'd manage (not) on my own. "What if this happened and you're caring for a child that needs to be carried everywhere?"

You adapt, he said.

Yes, I thought. I had learned some one-handed dressing and cellphone tricks and occasionally my teeth came in useful as a second hand. But I still needed an arm up our outside stairs, my seatbelt fastened and someone to open my child-proof medicine bottle (not to mention shopping, cooking and household chores).

We do adapt, I thought, but not alone. What about people who were on their own?

A friend suggested that perhaps there was a lesson to be found in my week off.

I did notice how happy Ben was in the mornings—now that I only had to worry about getting him out the door. Did it have anything to do with my less frenzied state? Or was he always like that and I was too busy to see?

There were tragedies during the week, some far away like the murder charges against Olympian Oscar Pistorius, others closer to home.

Yesterday I read a presentation on black history month from one of my kids' schools. "If you think you can do it, and if you think you can't do it, you're right," was a quote that featured prominently. I found this little homily hard to stomach after the grisly slides of black slaves with monstrous welts on their backs.

It reminded me of the "Nothing is impossible if you try hard enough" mumbo jumbo I was brought up with, those empty platitudes I actually believed in before I had my son with disabilities.

I began to see how what we really need, what we're often running low on, are courage and compassion, for ourselves and others. And how nurturing those things in ourselves has nothing to do with fast or slow.

That ache in our chest that makes us feel we've lost a part of who we are—that leads us to seek out more and more things, faster and faster, to try to make something bigger of ourselves, to try to prove we're valuable—is the very sign that we need to stop and know we're enough. To do that we have to let in the intangibles of gentleness and kindness.

But often we look to others who care about us for this reminder.

"Tell me that I am myself," implores one of the key characters in Ramona Ausubel's novel No One Is Here But All Of Us. "Tell me that I still am."

If I learned anything this last week, it's a reworking of that quote about the power of positive thinking.

"If you think you can do it ALONE, you're WRONG," is my rewrite. "We need each other."

Our British viewers should check out this new documentary on BBC1 tonight at 10:35 p.m. GMT.

Letting go follows Rosa Monckton and her daughter Domineca as Domineca leaves school and takes her first steps into a more adult world. And as Domenica prepares for the challenges of independent life, Rosa meets three other young people with learning disabilities, and discovers how they are managing their transition to greater independence.

The filmmaker -- Rosa Monckton -- has already produced a powerful series of films about the challenges of raising children with disabilities called When love is not enough.

Hope one of our British readers can fill us in on the new documentary airing tonight!