'It was the greatest gig ever:' Bloorview teacher Shelley Neal

By Louise Kinross

After 32 years as a teacher-librarian, Shelley Neal’s life has come first circle.

“When I was a little girl in public school I remember being in Mrs. Harper’s library and reaching for a book on the shelf called Mine for Keeps,” Shelley says. “It’s about a beautiful young girl with cerebral palsy and it made me dream of being a special-education teacher.”

After seven years teaching at the Bloorview School authority, Shelley returned last year to teach in her childhood school library—the same one where she first read about a child with a disability.

This year she received the 2015 Prime Minister’s Award for Teaching Excellence for her work with students here from junior kindergarten to Grade 12, both in the class and the library. Shelley is married to Dr. Peter Rumney, physician director of Holland Bloorview’s Rehabilitation and Complex Continuing Care.

BLOOM: Why did you decide to work as a teacher-librarian with children with disabilities?

Shelley Neal: Because I love children and I love books. I want them to embrace each other and, in so doing, create a knowledge base that gives students more options in life. My love is for children and how I can engage and bring them into knowledge through books and text and literature, and, in that knowledge, create for them a freedom to think.

It’s almost a selfish thing to be in a relationship with children with different disabilities, because it’s so rich. As you bring out their giftedness, they’re bringing out your giftedness. It’s a real cycle, and out of that comes an incredible journey of relationship that empowers both people.

BLOOM: How did you work with the students in our school?

Shelley Neal: It was the greatest gig ever. First of all you have books, and books are a portal into different worlds and different thoughts, and then you have children—not children with disabilities, I just saw them as my kids. My question was ‘how do I connect these two worlds—the world of literature and books and thoughts—with children who are questioning and wondering? For the younger ones that was easy: by reading and singing and poetry and then saying: ‘I wonder, what do you wonder?’

For the older students I used text to connect them to the world and see their role and passion in the world. It doesn’t matter about disability because they are a whole person right the way they are. They still had that wonderment and we’d use the library, virtual or real, to engage them in discovering.

The middle school fiction is incredibly rich with universal themes of connection and hardship. I had children who were really hurting, coming through surgery and dealing with pain and conflict and all of that regular kid stuff like relationships. I needed to use text to create a genre to have a dialogue about that.

And then I had to figure out what to do with the reluctant guys who don’t want to read. I would use graphic novels to entice them into the text in a way that was fun and that they could glean information that was useful to their life.

One of the ways our kids learn is visually, so I also used TED Talks. One of the best was about a woman from New Orleans who painted one side of an abandoned house with chalkboard paint and wrote ‘Before I die, I want to…’ Then she left chalk there for people to share their hopes. I watched this talk with our high school children and they decided to create their own little chalk boards that they kept in the school, and that anyone could write on. I explained that they had to be sensitive because we have children who are dying with cancer, so, is there another saying we could use? They came up with ‘In my life I wish…’ I was able to get the raw materials for them and poor Peter helped them build this. Most people see him as a doctor, but I see him as a carpenter.

BLOOM: What kind of things did people write on the boards?

Shelley Neal: To sing opera on a stage, to learn to walk again, to go back to school to be with my friends. You saw some of the hurt and coming to new terms with what their body can do. But you also saw things like ‘to study about whales.’

BLOOM: What kind of changes did you see in the students you worked with?

Shelley Neal: It’s growth—growth in their understanding that they have abilities, and they have a brain to think, and learning how to connect them to deepen their understanding and knowledge. For beginning ones it’s literacy. In grades 1 to 6 they learn how to create a good question in their wonderment and to develop research skills. The older ones take those reading skills to a deeper level to empower them to read more complex text that brings up ideas.

BLOOM: What was the greatest challenge?

Shelley Neal: It was looking at each child’s ability and how to make access to information for them. So if I had a child with cerebral palsy who couldn’t hold a book, how do I allow them to access text? An incredible volunteer scanned all of our pattern books into this software called Clicker, so kids could access it through switch technology—with a click or the hummer switch or a head switch or eye gaze.

The other barrier was kids who hadn’t been successful in school. They hated reading and hated the library. I had to engage and empower them to develop a love of learning and show them reading is a skill that would help them. I used graphic novels and good Ted Talks as ways of making information accessible. Then we got into WordQ and SpeakQ, which allow a student to hear and read along with text that is too hard for them to read, but the thoughts are important because they can think really well.

BLOOM: Did you ever get frustrated because you weren’t able to find a way for some students to communicate?

Shelley Neal: The staff came together to learn what the child’s language is and how they communicate—whether a smile, an eye gaze, a motion of a hand or finger. The biggest thing for me was learning how to make my questions simple, so through a ‘yes’ or ‘no’ response, I could start to see what was going on in the child’s world.

When I was frustrated I went back to the other disciplines and said ‘here.’ That’s the richness of Holland Bloorview. A whole team is there to enable this child. So the occupational and physical therapists would problem solve on how to position a child correctly or how to make a switch that works best and which part of the body has most consistency for hitting it. This award is a representation of a team, not just me.

BLOOM: What was most rewarding?

Shelley Neal: The greatest joy of a teacher-librarian, no matter what ability the child has, is to have them sit on your lap and engage in a story with you. That is the magic of library. When technology is too cumbersome or slow, let’s share a text together and read and question and think.

BLOOM: Have your thoughts about disability changed over the years?

Shelley Neal: Yes. I went from being a ‘goody two shoes’ who wanted to learn how to help people—where it’s all about you—to a deeper understanding of the power and resilience in the children. They are whole and capable, and my job is not to make it better. My job is to come alongside and learn with them and be honoured with the journey. I learned that these are incredibly powerful, amazingly resilient people—whether they were in junior kindergarten or Grade 12—and they have a lot to teach me about life. I need to stop and listen.

BLOOM: What advice would you give parents?

Shelley Neal: To surround yourself with an incredible team, and that’s not just the professionals, but other parents of children with disabilities. Love yourself, care for yourself, and be the strongest advocate ever. This is a tiring, long journey and you need to make sure to feed yourself.

With Debbie Sutherland, one of my Bloorview school colleagues, we birthed a respite program as a way of honouring and valuing the parents. They think it’s for the kids, but it’s for the parents to reconnect for four hours, to build themselves up. And now they’re connecting with other parents of kids with disabilities to create a valuable team.

BLOOM: What is next for you?

Shelley Neal: Last year at my new school we brought in whacks of technology and this year I want to build capacity with other staff members so it becomes second nature to them. The reason for my secondment to the Bloorview school was to build a skill set that I could take back to the board. In addition to technology, I bring back a deeper understanding of inclusion.

I’ll continue on with our respite program and then I’m getting set to retire. My next job is to use my harp, my music, to bring an environment of rest and healing to the sick and the dying.

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A therapist harnesses the power of play

By Louise Kinross

Salma Kassam landed her first job as an occupational therapist at Holland Bloorview 22 years ago and has been here ever since. She works with inpatient children who have brain injuries sustained through trauma or serious illness.

BLOOM: Why did you get into occupational therapy in children’s rehab?

Salma Kassam: When I was a student I was one of the lucky few who had several placements at Bloorview. I did community outreach visits to nursery schools and had an inpatient placement working with the babies and young kids on Unit C. After one of my placements, I volunteered with the babies and would come and do 'cuddle time.' I fell in love. I thought the kids were amazing and the clinicians walked on water. I was so enthralled with everything we could help the children achieve. Once I discovered Bloorview, I was in it for life. It was magic.

BLOOM: Who do you work with now?

Salma Kassam: I see mostly school-age and older children who have a brain injury as a result of a motor vehicle or other accident, or from a tumour or encephalitis. We usually see kids four times a week for about 45 minutes. There are kids who are still very acutely ill, and who are learning to eat, walk and talk from the beginning again. And there are others who are more able and doing more fine motor and cognitive assessments to look at skills to get them back into the community.

BLOOM: What kind of changes do you see in the kids?

Salma Kassam: We’re so blessed. We see amazing things. It shows the resilience of children and the importance of family support. The big difference working with children is that children are motivated by play and move on with play. They don’t harp on the negative as much as adults do.

Kids have an amazing spirit that drives them forward. It takes them time to learn that this is a safe place that’s engaging and playful and fun, and not just all of those intrusive procedures they may have had before getting here.

I remember one mother who videotaped her child during rehab. He went from having a thumbs up and down to [communicate], and not being able to stand, eat or hold a block, to walking independently, eating regularly, speaking and going back to his community. Of course he still had things to work on, but it’s nice to see the critical role we play in the early stages.

BLOOM: But not all children with brain injury have that kind of recovery. Some of them are very changed from the child they were before.

Salma Kassam: There can be an overwhelming sense of grief and loss for the family and client, and we see that. But kids are able to get past some of it in a way that’s amazing and that’s the resiliency I’m talking about. They still want to do the things they used to do, and they find ways to do things. Not everyone makes the same recovery. There are children we couldn’t help as much as we would have liked, as well as ones who defy expectations. There are so many things you can’t predict. Children who recover physically but have invisible cognitive impairments or personality changes face different challenges in the real world.

BLOOM: Because everyone sees the same person on the outside and assumes they have fully recovered.

Salma Kassam: Exactly. There are also kids who look very impaired physically and have cognitive strengths. The range of ability is so broad that we really have to look at the uniqueness of each individual—at their strengths and limitations—in the same way we would for any of us. We have to shed our preconceived notions when we see someone with a certain presentation.

BLOOM: What’s the most challenging part of your job?

Salma Kassam: I think time. We want to be able to spend the quality of time with each client and we try to make the most of every minute. But there’s a lot of things behind the scenes: documentation, communication with community people or accessing resources or getting information about equipment. And other demands to participate in education, as a teaching hospital. So prioritizing and managing and helping each family to the best of your capability is the challenge.

BLOOM: What about those times when a client doesn’t make the progress hoped for?

Salma Kassam: The brain is unpredictable and it heals in its own way, and we can only do what the brain will allow. I may try the same intervention with two similar clients and one may respond to it and the other not. It’s outside our control. It can be very difficult when two families with similar children have completely different experiences in rehab, and it’s not necessarily to do with the clinician but with the client’s type of brain recovery.

BLOOM: How do you deal with that?

Salma Kassam: I have a reputation for crying. I do sometimes wear my emotions on my sleeve. I celebrate with families and I grieve with families. I think we can still maintain a professional relationship without giving away our human qualities. I want to support the parent. We have a lot of things in place for families, but we often need to remind parents that they need to look after themselves and have an opportunity to express their grief and loss and their joy.

BLOOM: What is most rewarding about your job?

Salma Kassam: It’s always the kids. They always bring sunshine to my day. In so many ways I learn something every day and I help someone every day and that’s a pretty good life.

BLOOM: What advice would you give parents?

Salma Kassam: Be patient. It’s hard. Listen and learn from experts, but recognize that you’re an expert in your child, so share what you know. Hope is important and acceptance is important. Be there as much as you can, but also, sometimes you can help your kid by not helping them, which allows them to grow.

BLOOM: What advice would you give a therapist starting out on the unit?

Salma Kassam: There are so many skilled clinicians here who I’ve learned from and who continue to inspire me. So take the expertise of those people who’ve done this for a lifetime. You can learn so much from the people around you and from the kids.

Sometimes, as adults, we’re very product oriented and focused on the end result. Children are about the process. They learn from the act of doing and if the product isn’t perfect, it’s okay. Remember that in the end your therapy session with a child may not be perfect, but you’ve both learned from the session and that’s the important thing.

Take care of yourself and know when to ask for help. If you’re overwhelmed either physically or emotionally, go to occupational health or go to your family doctor or go to your massage therapist or whatever it takes to get you through that day. We do have days where our body or mind gives up.

Value your time outside of work—whether that’s recreational opportunities or family or whatever makes you happy and joyful. Brain injury can happen to anyone, at any time, so appreciate every day the things you can do. And wear good shoes.

BLOOM: You mean comfortable ones.

Salma Kassam. Yes. It's a very busy place.

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When there are no medical answers

By Louise Kinross

"This is not my fault."

That was the key message I picked up on resilience when I read this Facebook post by Lean In author Sheryl Sandberg after her husband died suddenly and tragically last year. Adam Grant "told me to ban the word 'sorry,'" Sheryl writes. "To tell myself over and over, This is not my fault." 

I was trying to apply it to how I felt after a visit with my son to a surgeon didn't go as I had hoped. My son's curved spine, which developed suddenly over the last year, is worse but the surgeon doesn't want to operate. Because it's high up, if he straightens it it will move higher up, meaning he would probably have to fuse his spine up the neck to correct it, so my son would lose all movement there. There are also serious, serious risks.

But there is no way to prevent the curve from worsening. So when I got out my little blue leather notebook, with the gold tinted paper, and read through the prevention strategies I hoped might work, they were all discounted.

No, correcting his leg length difference caused by a previous surgery wouldn't help because it's not the main cause. No, wearing a brace wouldn't be useful in this case, even though it's helpful when teens develop idiopathic scoliosis. In our case, it would just make our son's muscles weaker. What about if he wore it at night? No.

No, there isn't a different kind of surgery that could be done. And no, even though there was a cheery picture on the wall showing a teenaged girl before and after her fusion surgery for idiopathic scoliosis, that was not the same beast we were dealing with. It didn't have any relevance to our case.

He would do the surgery if he thought he could help my son, but he didn't. He couldn't promise that it wouldn't get worse, and I didn't have the nerve to ask "Will it get worse?"

Which left me back at: "What are we going to do?" I started scanning the pages in my notebook again. But all I could see was #1, the leg-length difference question. I knew he'd said it wouldn't help, but I couldn't stop myself and asked again. 

I was in desperate mother mode.

I never thought that at age 22 my son would be facing a new health crisis. For some reason, when he was little, I imagined we would have everything uncovered and figured out, as well as was possible, by then. 

I'm angry at his syndrome, a bone disorder, angry at the limits of medicine and angry at my limits as a mother. 

"There wasn't anything I could have done to prevent this, was there?" I ask his dad. I've been trying to get someone in the adult system to see him about his spine since last year. 

Then I remember that when he had his hip surgery one of the surgical fellows told me he had soft bones, like an elderly person. Other people with this syndrome have developed a curved spine, in spite of what their parents did, or didn't, do.

I hate it when he has a bad pain day and moans and I don't have a good answer when he asks when it will be better. 

I tell myself I have to be flexible. I have to adapt. They will see him again in a year. In the meantime, I have to get used to not knowing what is going to happen, and not being able to do anything about it.

When I want a break, I can walk outside and sit under these giant trees in Spiral Garden, the ravine area that is an arts camp at Holland Bloorview. 

"It's not my fault."

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A new way of teaching health students about genetic conditions

FRAME is a series of videos on children with genetic conditions and their families talking about their lives in general and from a medical standpoint. 

They were developed by Positive Exposure as a way to educate health professionals on conditions like Marfan and Down syndrome in a way that promotes the beauty and humanity of the participants. 

The goal is to get away from the "patient as a specimen" model of medical literature.

Positive Exposure is looking for health professionals and families to view the videos and give them feedback.

After viewing the videos, health professionals are asked to fill out this survey.

Families, people with the conditions and others in the community are encouraged to fill out this survey. 

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Grandma gets UK retailer to adapt clothes for easy access

By Rita Kutt

My grandson Caleb had a very difficult start to life, which included seizures.

Last year when he turned three, his mum Zoe and I started looking for clothes to accommodate his feeding tube and nappies. Until then, we’d been able to buy clothes from the high street stores and supermarkets here in England.

To my dismay, after looking in stores and online, I found nothing available for his age and size. I tried parenting websites for advice, but soon realized that we could only buy them from specialty catalogues.

Parents and carers told me they had to buy from the United States, as even with postage it still worked out cheaper than buying from the local catalogues. Others were using expensive dressmakers to alter their children’s popper vests and sleeping suits by adding material so that they would still fit.

Disability catalogues charge more because their products are specially made. The cost of a popper or snap vest was about $30 in the catalogue, compared with the $2 vests (up to size 3) we could buy in our regular stores.

How would my family afford this new clothing? Caleb’s mum had given up work to care for him. And the family had to pay for private physiotherapy for Caleb, who is still not able to crawl, sit, stand, walk or even have full control of his head. The cost of this new clothing was a huge worry.

Why couldn’t the less expensive clothing, now available up to size 3, be made a little bit bigger, with extra material?

I decided to campaign for more affordable clothing in larger sizes and asked Marks and Spencer if they would help. I chose them because they're a global company and that meant more children and families would benefit. They have dedicated websites in Australia, New Zealand, Canada and the United States, and they deliver free when you spend $50. They also deliver to over 30 countries at varying cost. Marks and Spencer have a great reputation for quality and are a respected company that started out in Leeds, which is my home town. I thought if they were able to order them by the thousand, then surely they would be priced lower.

I wrote to their customer services’ team, and they promised to pass my e-mail onto their buyers. They quickly came back to me and said that they were interested in my proposal and were hopeful they could help.

Soon they were sending sample suits for Caleb to try. My daughter-in-law Zoe has been able to give very positive feedback and has made suggestions about how the clothing can be tweaked. For example, the neck area was a little too large in one item, so they made the opening smaller.

Zoe asked if they could also do styles for older children and Marks and Spencer got in touch with the disability charity Scope UK for advice from families. Scope arranged for parents from their online community to trial sample sizes with their children and send in feedback too, which has all helped to shape the products.

The new range of clothing, launched in February, is more than I ever hoped for!

Initially I just asked for popper vests for older children. Marks and Spencer have gone above and beyond by also making sleeping suits, long and short sleeve items, all-in-ones, and all with easy accessibility for nappy changing and tube feeding. Two of the items have snaps across the tummy for a feeding tube. They are made for children aged 3 to 8 at the moment, with the age range being extended to 16 later this year.

The older children’s styles will be age-appropriate. The clothing is great quality and affordable, and ranges in price from $8 to $15.

I have to admit that a month or two after contacting Marks and Spencer, I had a little wobble and thought, “What if other families don’t feel the need for these clothes?” I asked the company if I could tell people on my Facebook page about what was happening and they said yes.

In a few days I had over 30,000 responses! There were friend requests from strangers and messages from around the world, including India, Spain, Portugal, New Zealand, Australia, the United States, Indonesia and Ireland. All wonderful messages of encouragement that made me realize I had done the right thing, and that thousands of children and their carers would benefit.

People also shared ideas of their own, and it convinced me that we should be pushing ideas to other businesses. After all, if we don’t let them know what’s needed, then how are they going to help?

I decided to set up a new facebook Group entitled Marks and Spencer and Me: Special Needs Clothing so that everyone could put forward their thoughts. We have over 6,000 members and are still growing. Anyone wishing to be kept updated please join. The retailer is in the process of producing more age-appropriate garments for youth up to age 16 and are making some improvements to the existing line.

We're hopeful that this much more affordable clothing for Caleb will be a weight off his parents’ minds, and will help them continue with the private physiotherapy he so needs. Caleb has profound and complex needs. I know lots of families will have their own individual expenses to accommodate their children’s needs. So this should also help them too.

The attention to detail and quality of clothing is what Marks and Spencer do best. This new adapted line has been so popular that many items have sold out, but they’re being restocked quickly. The demand has been unprecedented, which is heart-warming for me.

Thank you Marks and Spencer, for making this happen.

I am one proud Grandma.

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That's not a problem. It's a power!

By Megan Jones

When acting, Jessica Thom never stays on script. In fact, she’s neurologically incapable of it: the London, U.K.-based performer has lived with Tourette syndrome for decades. Her tics cause her to experience muscles spasms and to randomly speak words thousands of times a day. Onstage, this means nothing goes quite as planned.

In 2014, Jessica began performing Backstage in Biscuitland with actress Jess Mabel Jones. The play uses puppets, props and audience participation to celebrate and demystify Tourette’s. Since then, it’s been performed in the U.S., Canada, Norway and Bosnia, among other places.

The show is just one facet of Touretteshero, a project that the 36-year-old co-founded with longtime friend Matthew Pountney. On her Touretteshero blog, Jessica writes about her life with the neurological condition and catalogues her tics, inviting people to make artwork—images or poems or music—in response.

Here, she weighs in on growing up with special needs, making theatre more inclusive, and why laughter is an activist’s most powerful tool.

BLOOM: Backstage in Biscuitland is random, unconventional and sometimes quite absurd. How did the play come to be?

Jessica Thom: The roots of the show are in the difficult experiences I’ve had accessing live performance. In 2011, for example, when I was attending a comedy show, I was asked to move to a sound booth because of the noises I was making. We’d met with the performer beforehand, he’d explained my Tourette’s to the audience, but despite all that planning, I got singled out.

As I sobbed in this sound booth, I promised myself I would never go to the theatre again. It felt like an experience that I couldn't access. But I was lucky to have friends and family who showed me there was another way. So eventually I decided to take to the stage—the only seat in the house I wouldn’t be asked to leave.

BLOOM: In which ways does the play fit into your broader project, called Touretteshero?

Jessica Thom: Like the play, the purpose of the site is to share my experiences with Tourette’s, and to celebrate the creativity and humour of the condition. We’re interested in drawing attention to the invisible barriers that exist within our society that prevent people from being included. Lots of exclusion happens because people don't experience difference. If something doesn’t directly affect your life, it can be easy not to give it much thought. That’s why disabled people need to speak out about barriers.

BLOOM: You’ve spoken in the past about the need for relaxed performances. How does Backstage in Biscuitland fit that model?

Jessica Thom: Backstage in Biscuitland is also about our belief that making art inclusive makes it better art. All our performances are relaxed performances—they welcome people who might find it difficult to follow conventional theatre etiquette. People are free to move in and out. We also build audio description into the dialogue for people who can’t physically see the set, and try to offer captioned or interpretive performances whenever possible.

Finally, before a show, audience members can participate in 'touch tours.' We allow people to touch the props we use onstage. It’s useful for someone who is blind, but also for someone who’s on the autism spectrum.

BLOOM: You often say that incorporating disability will enhance the theatre-going experience? Why is that?

Jessica Thom: Being inclusive will make theatre experiences more dynamic for everybody. If you take my show as an example, every staging is different because I’m literally incapable of doing the same show twice. Jess Mabel Jones’s job is to keep us on track and not let my tics make the play an hour of rambling about lampposts. Left to my own devices I probably would. But my tics keep the show interesting.

BLOOM: You’ve got some interesting outfits as well. What’s with the superhero persona?

Jessica Thom: The persona is a way to reframe my tics not as my problem but as my power. They let me do things that neurotypical people can’t. I’m constantly colliding strange ideas. It took me a long time, but I was eventually able to see my unusual neurology as a valuable source of creativity.

BLOOM: Right, let’s talk about that process. What was it like to grow up with Tourette’s?

Jessica Thom: When I was younger my tics were much less noticeable to other people. But they were there. At school I would save tics up and then wriggle about frantically in the bathroom. Or sit on my arms and legs to give myself pins and needles just so I could feel a different sensation in my body. As a kid, I didn't have much space to talk about my disabilities. There was a lot about them I didn’t understand. I thought I was bad or evil.

Generally though, I was well-supported, and I can still vividly remember moments when adults were understanding when they could have responded poorly. When I was very young, I whipped a basketball in my teacher’s face during gym class. It was an uncontrollable action. He ordered me out of the room straight away, but as soon as I told him that I hadn’t meant to throw the ball, he accepted my reasoning and let me rejoin the class. I thought that was an incredibly brave decision.

BLOOM: As a child with a disability how did it make you feel to be listened to?

Jessica Thom: It made what was a frightening situation manageable. I think children have an innate openness to being inclusive of different types of people. It’s important that that’s nurtured. We adults can’t let our discomfort be transferred onto the young people we’re raising or supporting.

BLOOM: So kids really are the future then.

Jessica Thom: A few days ago I wrote about my friend’s daughter, Ruby. Her mom had told me that at bedtime recently, Ruby discussed how parks could be built to better suit kids who used wheelchairs. She naturally understood the social model of disability—that we need to focus on changing environments, not people—at age four. If a preschooler is able to brainstorm ways for everyone to be able to participate, why on earth do I spend so much time explaining this concept to adults?

BLOOM: How did you get to a point where you felt you could accept and even celebrate your tics? I think many young people struggle with that.

Jessica Thom: As my tics started to have an increasing impact on my daily life I found myself having more conversation about Tourette’s with my friends and family. During one conversation with Matthew, he described my tics as a 'crazy language-generating machine.' That idea really captured my imagination. I was able to see value and creative potential where I’d only ever seen something to be ignored, minimized and dismissed. A conversation has the potential to spark change.

BLOOM: But that doesn’t mean there aren't still challenges.

Jessica Thom: Of course not. My tics now affect my ability to walk, and I use a wheelchair most of the time. That means I have a simple, visible disability. When I was walking independently my tics were visible but they were often interpreted as me being drunk or dangerous, and people often responded with fear. These days, people are more likely to be supportive or empathetic. But they’re also more likely to behave in a way that’s condescending—they make assumptions about my ability to work or think independently.

BLOOM: I’ve read online that you say the word biscuit 16,000 times a day. Is that true?

Jessica Thom: Yes! We didn't count for a whole day, obviously. Years ago my brother-in-law counted how many times I said biscuit over five minutes and then multiplied it. It gave us a good laugh.

BLOOM: Speaking of which, a big part of your show is finding humour in your tics. What makes self-deprecation a valuable tool?

Jessica Thom: Laughter can make us feel empathy; it can make difficult situations more manageable. My life would be innately more challenging if I didn't find humour in some situation.

Often, people are afraid of using jokes, especially linked to disability. But I think it’s important to consider where laughter sits. There are so many jokes about Tourette’s out there anyway. I remember seeing a video of somebody pretending to have the condition. It had 30 million views. I just thought, “Wow 30 million people are really missing out. Because the reality of life with Tourette’s is much funnier than this.”

BLOOM: And people are probably more receptive to your message if they feel like they’re in on the joke.

Jessica Thom: Right. I think laughter and humour can be used to get people to think about things they might find difficult. We tend to switch off if we think we’re getting a lecture.

BLOOM: What advice do you have for kids with disabilities who might be feeling isolated?

Jessica Thom: Learn about the social model of disability as soon as you can. I don't think there’s any age where a child is too young to be introduced to the idea that it’s not about fixing people it’s about fixing environments. Learning I have the power to change my environment to fit my needs has been an important part of my journey as a person with a disability.

BLOOM: And what about parents?

Jessica Thom: Help your kids build positive memories—they can be protective. We focus on events for young people because by building positive memories, children have something to draw on if times get tough. Building a resilience in children with disabilities is an act of resistance. If kids with disabilities have high expectations for themselves and for others, we’ll have a much more inclusive society. Damaged confidence is much easier to prevent than it is to repair.

Photos by James Lyndsay 

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BLOOM story sparks CTV piece on prosthetic designs

We shared this story in our last BLOOM e-letter about an innovative company in Victoria, B.C. that's blurring the line between prosthetics and design with these stylish covers.

Avis Favaro, medical correspondent at CTV National News, says she saw our story and followed up with this broadcast piece. Click above and check out these funky limb covers live.

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