Monday, September 25, 2017

It's 2017, and speech technology is still primitive

By Louise Kinross

I like our Dear Everybody campaign because the messages, like this one above, are real, and come from our children and families.

Most people assumes technology is an equalizer for people with disabilities, and in some cases it is.

But in the 20 years I’ve followed the use of voice devices, and more recently, voice apps that can be used on iPads, I’ve never seen a product that’s nimble, intuitive and fast.

In fact, you may have heard our Dear Everybody radio ad with Gavi, who uses a communication device. What you may not know is that Gavi had to pre-program her comments. She couldn’t express them live, because it isn’t possible to use a device at the speed people speak.

Indeed, “the process is often extraordinarily arduous and fatiguing for the person using the device,” writes McGill University scientist Gail Teachman in a study in Qualitative Inquiry this month.

Last week I had Marna-Rose Minett in my office. She’s raising her seven-year-old granddaughter Rayne, who has cerebral palsy. Marna-Rose noted that Rayne uses her communication device at school, but “we don’t use it much at home because we can understand her speech, and she has to go through so many different screens” to put words together on her device.

“It's slow,” Marna-Rose said. If she wants something to eat, first she presses ‘I’ and ‘want’ on the first screen, then she picks the icon for ‘food,’ then within food she has to choose between ‘breakfast,’ ‘lunch,’ ‘dinner’ or ‘snack,’ then she chooses what she wants.’” 

I likened this cumbersome process to a person needing to look a word up in the dictionary every time they wanted to express it. “Can you imagine if you wanted to say a word, having to flip through a dictionary and find it first?” I said. “And then, when you're finished with that word, you have to look up the next one?”

We both laughed wildly. But it wasn't “ha ha” funny, it was sad and despairing.

There is an app on the market—Speak for Yourself—which tries to keep the number of clicks needed to find a word to two. That’s an improvement.

But anyone who uses mainstream business or consumer technology would gasp in horror if asked to play around with the setup, capabilities and speed of these speech apps and devices.

That’s why a high number of children and youth abandon them. 

Recently, I was struck by how many people are instead using using a letterboard and spelling out words, letter by letter, which are then spoken by a partner, to communicate.

That’s how Japanese author Naoki Higashida, who has autism and is largely non-verbal, wrote his two books: The Reason I Jump and Fall Down 7 Times, Get Up 8.

In ABC’s hit Speechless, actor Micah Fowler communicates by selecting letters to form words with a laser pointer attached to his glasses.

One of our clients spoke to me the other day by pointing to letters to form words on his letterboard, while I spoke the words to confirm accuracy.

Over the years, I’ve seen scientists study why children and youth abandon voice devices. And I’ve always thought: “Why wouldn’t they?”

“I keep hoping that Apple will develop a voice app or device that is as intuitive and user-friendly as its other products,” I wrote in a blog in 2014. “However, I’ve been hoping that for more than 15 years. I even began a small campaign of tweets to Apple CEO Tim Cook last year that went unanswered. I think the big computer makers have let our families down in not bringing their expertise to the AAC table.”

Why is it okay, in 2017, that people with limited speech have to endure an “extraordinarily arduous and fatiguing process” as their only option for self-expression?

If current technology was sophisticated and speedy, why would a famous author choose to write his books by pointing to letters on a letterboard?

Why would my son prefer to use sign language, even though it drastically restricts who he can communicate with?

I have an idea for a scientist. I want a researcher to use a voice device for one week—24 hours a day—and not use the keyboard, because many young kids using devices can’t spell. Then, write a paper about how “easy” or “hard” it is to use, and how it compares to an Apple device.

I e-mailed my idea to scientist Gail Teachman, and this is how she responded: “I think a really important aspect of that researcher’s learning would be that NOT ONLY are devices slow, hard to use and clunky, but using an AAC device can be stigmatizing. The researcher would very likely experience social interactions where suddenly they are not seen as an expert, not smart…”

There would be “lots of being spoken to ‘like a child’ and an absence of the respect they are used to receiving from listeners. In short, what they have to say would suddenly be judged less valuable, less worthy of another person’s attention, less important and therefore, not worth the time it takes to listen.”

Why is that experience acceptable for children who struggle to speak?

Years ago, I spoke to the head of our research department about applying for one of Bill Gates’ Grand Challenges grants to develop an intuitive voice device. But the grant needed to create a life-changing solution for large markets of people around the world

The number of people using voice technology is relatively small. But it still
makes zero sense to me why Apple or Microsoft wouldn’t choose to enter the market for the goodwill they would generate alone. The media stories generated would be solid gold.

Gail Teachman is a postdoctoral fellow at McGill University with the Views on Interdisciplinary Childhood Ethics team. Her research examines the moral experiences of childrentheir views on what it right and wrong, good and bad, and just and unjustparticularly in the context of childhood disability. 

Thursday, September 21, 2017

Parenting as a grandmother: 'You're so much wiser'

By Louise Kinross

At age 63, Marna-Rose Minett has raised two children.

Now she’s raising a thirdher granddaughter Rayne, 7, who has cerebral palsy and lives with Marna-Rose and her husband Wayne.

Preparations are already underway for Halloween.

“Rayne loves dressing up in costumes,” says Marna-Rose, pulling up a picture on her phone of Rayne posing as “super girl.”

“This is a costume I originally made for my daughter,” she says, pointing to Rayne in a spotted leopard suit. “Rayne loves music and dancing. She has her own keyboard and two play guitars. She’s trying to talk me into riding lessons,” Marna-Rose says, looking at a photo of Rayne atop a pony. “She’s bright and sunny and personable. She charms a room. She’s really positive, and also very tenacious, when she wants to do something. She makes friends and she wants to be with people and do things.”

Marna-Rose became Rayne’s primary caregiver when Rayne was 18 months old. Rayne’s mother is very involved in her life, but needed to work on her addiction issues.

“You’re so much wiser,” Marna-Rose says, comparing parenting at this stage in her life to when her own children were young. “Things that would have made my husband and I crazy with our own kids are minor bumps in the road with Rayne. You have that perspective.”

While in some ways their parenting style is more laid back, Marna-Rose says they’ve been very hands-on with Rayne’s physiotherapy. “We realized how incredibly important that was for her over the long term, so we worked really hard on that. Maybe if we were younger we would have let that slack a bit.”

Rayne has stiff muscles, but “walks, runs, dances and skips,” Marna-Rose says. Her speech is delayed, and while her grandparents understand her at home, Rayne uses a communication device at school. She graduated last year from Grade 1 in the Bloorview School and is now in a contained Grade 2 class in a neighbourhood school. “We appreciate her milestones more,” Marna-Rose says. “I don’t know if it’s because she’s our granddaughter, or because of her disability.”

When Rayne was born, disability was not new to Marna-Rose. She had studied kinesiology and worked in group homes, including managing one for adults with cerebral palsy. She was also executive director of a program that offered respite to parents of children with severe disabilities.

“Oh good, I can handle this," Marna-Rose recalls thinking, when the doctor said Rayne had cerebral palsy. “That was my first thought.”

Marna-Rose says the biggest challenge of parenting as a grandparent is physical exhaustion. “I have a bad back, and I was already an older mom once, when I had my own kids. I really notice how I don’t have as much physical energy and strength. You get down on the floor, and it’s hard to get back up. If Rayne needed soothing I was sitting in a chair somewhere, I couldn’t carry her. It’s parenting with an aging body.” 

As a grandparent, Marna-Rose says she hasn't had to deal with any feelings of guilt about Rayne's disability. “I know that can get in the way for some parents.”

Advocacy comes more easily at this stage in her life, she says. “My son is gifted and I was used to advocating for him. Being a grandparent, I think I’m a little more reasoned with my advocacy. I’ve had experience dealing with the school system. I can step back a bit, and I have the words. I need more sleep, but I have better words!”

Marna-Rose and her husband investigated a support group for grandparents raising their grandchildren, but “decided we didn’t need it. Our support group of friends, even though we’re all older, is strong, our family was very supportive, and the Bloorview School was fabulous. Our daughter is still there 100 per cent for Rayne.”

Marna-Rose works full-time as an administrator and she and her husband find yoga a great way to re-energize. “One piece of advice I would give to other grandparents raising a grandchild is ‘Remember, you know how to do this. You can manage.’ Because they do. They’ve already raised their own kids, so they have the life experience to have their grandbaby full-time. Use your friends for support.”

Wednesday, September 13, 2017

Six years later, a mom embraces life with her son's brain injury

By D. Brown

Wow! How time flies! Another “back to school” season is upon us. Six years ago, our healthy two-year-old son was hospitalized after suffering seizures and then severe brain inflammation. Since that fateful day, we have watched our son suffer and heal, struggle and overcome, falter and thrive.

Today, our son is firmly settled at his school where there aren't any grades. I know that he “would” be in Grade 3, if he hadn’t had his life-threatening illness. Instead, it's our seventh year raising a toddler. And when I see the young boys playing organized baseball at the local park, my heart does ache.

Despite the sadness around what would have been, what's new about this anniversary is that I no longer feel victimized by what happened. This year, there’s an acceptance around our family's reality and the sense of responsibility that comes with it.

Despite the fact that we have willingly sacrificed ourselves every minute of every day for our son's wellbeing, and are exhausted and worn, I now embrace this reality rather than feel sorry for ourselves.

I don't cower with embarrassment or feel the need to explain our situation when our son is loud and excited in public. I smile at him and comment about what he is experiencing, excited right along with him.

I no longer feel burdened by changing the sheets every few days with overnight diaper leaks. Instead, I'm thrilled that our son is daytime toilet-trained since February.

I don't feel slighted because he’s not neurotypical like other kids. I am enthusiastic about his unique unfolding of growth and development that continues to amaze us.

How did I get here? I think it's a combination of a few things.

Our son has continued to show steady gains in his recovery and development and time has given us practice at our new reality.

I don't really think about what “would have been,” because it's as irrelevant as what life would be like if I were born male, or in 1823, or if our son were a daughter. It didn't happen that way, so who cares?

After our son’s brain injury he was diagnosed with autism. We’ve embraced the Developmental, Individual differences, Relationship-based (DIR) model, or DIR/Floortime as the approach within which to support our son's growth. This is a developmental, rather than a behavioural, approach. DIR/Floortime is a lifelong model that encourages independence, relating, communicating, thinking, and the pursuit of a meaningful personal journey.

This too has given us a framework for acceptance because we can now be patient with our son's own developmental trajectory.

Sure, I still feel sad that our son will never have the kind of school memories that we did, that he hasn't started academics yet, doesn't know how to colour or read, can't write his name or dress himself, nor understand how to count objects.

But for the first time, I'm also okay with it because it will probably all come in time. If it doesn't, he's already perfect as he is, if I just open my eyes and see who is before me, instead of comparing him to a child I might have imagined.

After six years, I've come to own our reality. Our family tragedy called upon us to be there for our son in ways we might not have otherwise been able to.

For example, without our son’s illness, I would have been back at work much earlier, rather than staying home to care for him full-time. Being at home during the day since he started school gave me the time to fulfill the hobbies that kept me sane, and gave me the gift of getting to know our son to the point of experiencing the world from his perspective, to the best of my ability. With that empathy, I have been able to help him flourish.

He feels safe in this world with us. He is loved and treasured. His wellbeing is always taken into account first and foremost. Every day, I wake up happy to have our son with us and to be his mother, because I know that we can take nothing for granted.

I do feel angry, sad, scared, sorry and tired from time to time, but these moments are now fleeting, because I have the confidence that I understand our son, and I know how to support and guide him through his development.

This is different from how I felt in the early days, when I was scared and desperate to find the right therapy for him, or felt pressured to teach him skills that professionals thought he should know. I became disillusioned with the pressure to make him “school ready,” when I was only concerned with his wellbeing and development.

Mostly, I feel joyful, grateful, proud, hopeful, and eager. I've earned this because of the joy I sense in him and see on our son's face every day.

Our family, through my dedication, have collectively given our son a life where he can be himself and is happy. What more could we ever want?

You can follow this family on their blog.

Tuesday, September 12, 2017

A social worker who's lived the other side of rehab

'They tell me that it's different working with me'

By Louise Kinross

Gabriella Carafa is a social worker whose connection to Holland Bloorview goes back to her childhood, when she visited our neuromuscular clinic. Eleven years ago, Gabriella participated in Holland Bloorview’s The Independence Program, living for three weeks in a university residence to learn a variety of life skills. Since then, she’s worked as a youth facilitator at The Independence Program and at our Youth Weekend Retreat.

Three years ago she came on board as a social worker in our child development program, working with work with youth with cerebral palsy, spina bifida, spinal-cord injury, craniofacial differences and complex medical needs. She also provides social work support to young adults in The Independence Program.

BLOOM: What drew you into this field?

Gabriella Carafa: I wanted to be a social worker because I’ve always been interested in people’s emotions and supporting them to cope with their life experiences. I thought I could contribute greatly to working in children’s rehab because of my rich lived experience, in combination with my clinical skills.

My clients say it best when they tell me that I understand things and they don’t feel like they need to explain as much to me. They don’t have to explain about the frustrations around accessibility, or how hard it is to go out with your friends, because I understand. They tell me that it’s different working with me.

BLOOM: What are some of the common issues they bring to you?

Gabriella Carafa: The common issues are around acceptance of disability and self-esteem. Anxiety is a huge one and depressive symptoms, even if they don’t have a formal diagnosis. As they’re getting older, they recognize more things that they can’t participate in in the same way as their peers.

BLOOM: Do they also recognize the stigma of disability more?

Gabriella Carafa: Yes. If it’s not overt, it may be that they’re not invited to parties, because people assume they can’t go up the stairs, for example.

It’s not one of these things, but a combination of them: dealing with anxiety and depression and feeling like they don’t fit in or it’s hard to fit in.

BLOOM: What is the greatest challenge of your job?

Gabriella Carafa:
My greatest challenge is supporting youth with complex medical and cognitive disabilities in their transition to adult services. In the adult realm, there are long wait lists for services and funding. For families who maybe had funding in the children’s system for respite—that ends at age 18.

Sometimes I feel helpless. I try to make families aware of all of the funding changes as soon as possible, and look at ways they can manage by increasing their support network and connecting with other families to advocate for system change.

BLOOM: What do you love about your job?

Gabriella Carafa:
So many things. I think social work is a privileged profession. I’m a big believer in being vulnerable and being real, and in social work most of the time you see people at their most vulnerable, when they’re going through a tough time. I get to witness the strength of clients and families.

I ask those questions that other professions may not be asking, like ‘How are you coping?’ or “What has the impact of the diagnosis been on you and your family?”

You’re normalizing feelings they may not want to admit to other people.

Parents may be ashamed that they’re not coping well, and you create that space where they can just be honest without guilt or fear of judgment.

BLOOM: How do you cope with some of the emotions that come with your work?

Gabriella Carafa: I am working on not taking the work home. That doesn’t mean I don’t care. Making sure you have activities you do outside work that you enjoy is important. I also have a lot of social worker friends—some here and others not—and we can lean on each other for support.

What’s hard is when families think I should do more to change all the systems in adult services. When families want me to do more than I can, it’s hard on me.

I feel proud that I do this work and I feel I make a difference by creating a safe space and providing families with the information they need. They feel they have someone in their corner.

BLOOM: I know you also supervise social work students.

Gabriella Carafa:
I hope social workers coming into the field have a better understanding of disability, and I work hard to provide that both as a social worker and as a person with a disability. I can educate future social workers around disability and the stigma that comes with it. I support them to develop an anti-ableist practice.

BLOOM: You said your understanding of independence has changed since you went to The Independence Program as a client.

Gabriella Carafa:
I recognize that our traditional ideas about independence aren’t possible for every client, so why are we thinking about independence this way? With medical advances, a lot of youth with complex needs are living longer.

Until I began working as a social worker here, I didn’t have a thorough understanding of the wide variety of disabilities our clients have. Most of the youth I work with have complex needs. Many won’t go to post-secondary education, move out on their own, get a job, or volunteer, and that’s okay.

Even the people who are going to The Independence Program have changed. We have more people with cognitive, rather than just physical, needs. These are individuals who may never live independently in the traditional sense. But that doesn’t mean they can’t build skills and recognize when they need support.

BLOOM: I was speaking with a colleague whose family is from Ethiopia. She said our obsession with ‘independence’ as the end goal of life is hard for them to understand.

Gabriella Carafa:
Western ideas of independence are not reflected in many of the cultures we serve here. And whether or not you have a disability, people are living with their parents, spouses, children and grandparents, and the families are interwoven and interdependent. Why is that a bad thing?

On the other hand, we do have situations where the youth wants to be independent, but culturally the family doesn’t believe in that. They don’t want their child to move out.

Some parents experience grief when they realize traditional independence may not be possible for their child. However, that doesn’t mean there aren’t other possibilities for having a great life as an adult. That’s why we need to continue having transparent conversations with our clients and families that explore what is possible.

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

Gabriella Carafa: Adult services as a whole. I think we do a really good job in the children’s system, and adult services need to reflect that. I wish the adult systems were better connected and that adults with disabilities had more funding available to them. And I wish the systems reflected people with diverse identities and needs. Ha—that’s a lot!

BLOOM: What have you learned from families?

Gabriella Carafa:
That they’re resilient. That’s what I’ve learned.

Monday, September 11, 2017

Hotel helps kids with autism feel at home

By Louise Kinross

A small Newfoundland coastal town is home to Canada’s first autism-friendly hotel.

Hotel Port aux Basques offers a fully-equipped sensory room (above), bedrooms with extra security features for kids who wander, a visual kids menu and a social story with pictures and text that parents can share with children in advance so they know what to expect.

Owner Cathy Lomond says the idea came from local teacher Joan Chaisson. “She’d organized a group of parents and one of their biggest concerns was how difficult it is to travel with children with autism and special needs.”

Cathy offered the group—called Autism Involves Me—a spare room and the group raised money to furnish a sensory and quieting room.

“There’s a blue swing called a crow’s nest that holds a child cocoon-like, a peapod-shaped boat they can climb in and rock, little hand grips if they want to climb the wall, or bouncy bags if they want to blow off steam,” Cathy says. The room has special mats and a seaside mural painted by a local artist.

Recently, a family arrived for dinner after a seven-hour drive across Newfoundland. Their autistic daughter was distraught.

“The child was very emotional and screaming and it would have been impossible for them to eat in the restaurant,” Cathy recalls. “But by going into the sensory room first, the child relaxed into a quiet mode. The mother couldn’t say enough about what it meant to be able to go and enjoy their dinner.”

The hotel also has four autism-friendly bedrooms. The doors are equipped with high door chains for children who wander. Inside, the TV and pictures are mounted to the walls and there are locks on drawers if parents want to keep appliances like a coffee maker out of reach. The adapted rooms are priced on par with regular rooms and Cathy says they plan to increase them to 14.

“Before people come, we send them questions about how we can help with their specific needs,” Cathy says. For example, “if you need to go into our kitchen to prepare your child’s meal, you can do that. It’s all about satisfying people’s needs. We want to do the warm and fuzzy things that people remember when they travel.”

After creating the sensory room and adapted bedrooms, Cathy brought in an expert to educate front-line staff about autism.

“When our sports complex heard we were doing the training, they asked if they could send eight of their people down, because they wanted to adapt some of their classes for children with autism. So we did two trainings.”

Port aux Basques has been designated an autism-friendly community because a grocery store, hairdresser and other services have followed the hotel’s lead.

Cathy, who first worked at the hotel as a teenager, bought the property 19 years ago. Joan, the teacher who spearheaded the project to adapt the hotel, once taught Cathy's sister Sherry, who has Down syndrome.

Cathy now chairs Newfoundland’s tourism quality assurance board. “When our inspectors go to do inspections, they will be asking ‘Do you want information on how to be autism-friendly?’
 Cathy says adapting bedrooms is not expensive.

“It’s nothing new, because we’ve made things wheelchair accessible and accessible for vision impairment. This is the next step, given the growing number of children who have autism.”

Success “is all about the little things,” Cathy says.

Friday, September 8, 2017

This mom broke the social isolation of autism

By Louise Kinross

Charlie Castro is a happy, social 7-year-old who loves elevators, math and reading. But his autism makes it impossible to filter out the everyday noises of modern life.

“He’ll be having a great time, and then he gets a blast of an overhead announcement or a cell phone rings, and he has a meltdown,” says Charlie’s mom Karen. “We have to remove him and he misses out on the fun—again and again and again.”

Four years ago, “I couldn’t stand the isolation Charlie was experiencing,” Karen says.

So she started Play Dates, a Scarborough, Ont. support group for parents of children with autism and other physical and developmental disabilities.

She invited parents from the Holland Bloorview nursery school Charlie attended. In the early days, the group would arrange a trip to the zoo or island or a play date at someone’s home.

“We had this moment where there were six of us sitting in one of the mom’s homes and we realized, for the very first time, that we were relaxed,” Karen recalls. “Our children hadn’t changed, but for the first time I’d let my spine settle into a chair, and I wasn’t jumping up to apologize or correct Charlie or pull him off something.”

This feeling of comfort was a surprise, because parents didn’t experience it when they took their kids to parks or regular children’s programs. In mainstream settings, “they’re worried about whether their child will be judged, or they’ll be judged,” Karen explains. “It’s painful and traumatic when you don’t feel there’s anywhere you can go with your child where you’re welcome and your child is safe.”

Karen, a self-described dreamer, has parlayed her Play Dates ideas into a weekly, protected drop-in for the group at a double gym at the East Scarborough Boys and Girls Club (jumpy castle, balls and ride-on toys included); a series of five summer soccer lessons where each child had a one-on-one volunteer; professional guest speakers for parents; and birthday and holiday parties at family homes. They even have hair-cutting parties so that when one child wants to take a break, another can jump in the chair.

Saturday drop-ins draw 14 to 20 parents and up to 40 children, and over 200 people follow Play Dates on Facebook. One family drives in from Milton. Brothers and sisters are always welcome. Most parents are moms, but some dads participate. Most events are free.

The East Scarborough Boys and Girls Club hired a part-time disability studies student to help manage the Saturday group. “I don’t ask anything from people,” Karen says. “You don’t have to bring lasagna, and you don’t have to do any preparation. It’s come when you can.”

Many of the participants are immigrant families whose kids have hit a service wall, Karen says. “When English is a second language, things happen so much more slowly for them. It’s shocking. I could tell you stories that would curl your hair. I’ve learned a tremendous amount about heroism from some of the obstacles these families face.”

Karen says Play Dates helps parents see they’re not alone, and educates them on services that are available to their kids.

“This is an opportunity for people to talk, to share information, and for the kids to just be together and to be who they are. I hope other parents will consider doing this.”

Tuesday, September 5, 2017

‘Patient 357’ inspires project to mourn unnamed asylum dead

Photos by Anne Zbitnew

By Louise Kinross

A Stitch in Time: Mourning the Unnamed is a research and art project that honours the children and adults who lived and died in the Orillia Asylum for Idiots—which was renamed Huronia Regional Centre when it closed in 2009. Kim Collins just defended the project, which was her master’s thesis, at York University.

BLOOM: You mentioned that you worked with people with intellectual disabilities before this project. How did you get into that field?

Kim Collins: I worked in a variety of positions at day programs and also for people privately. One of the things about disability is that we assume disability is separate from ourselves. But when we look at our history, we see disability is everywhere and it intersects in all areas of our lives. Five years ago I would have said that I fell into care work, without recognizing that disability had already been in my life. I spent my formative years around a number of disabled people and I hadn’t really considered that before.

These experiences spurred me into disability studies. First, into the undergraduate Disability Studies program at Ryerson University and then to the master's program in Critical Disability Studies at York.

BLOOM: What is A Stitch in Time: Mourning the Unnamed?

Kim Collins: It’s a project that uses archival material and art to think through the institutionalization of people labeled with intellectual disabilities. It looks at how they were forced into unpaid labour and how they remain unnamed in both records and in death.

BLOOM: You studied what happened at an institution in Orillia.

Kim Collins: Yes. It changed its name three times. It was the Orillia Asylum for Idiots when it opened in 1876, then became the Ontario Hospital School Orillia and finally was called Huronia Regional Centre.

When I began my master’s at York I came across two records that formed the basis for this project: one an annual report of the Orillia Asylum for Idiots, written in 1887, the other a 1928 industrial training document for the Ontario Hospital School Orillia.

The annual report lists the death of patient 357. A boy of nine, his life and death are reduced to one line of text. The industrial training document describes how to teach ‘low-grade imbecile’ girls and women to sew. The training document lists the items these girls and women were forced to produce, including coffin liners.

BLOOM: Can you speak a bit more about that?

Kim Collins: Patients were forced to work and weren’t paid or compensated. They were forced to make coffin liners and anything that could be used within the institution: staff uniforms, ties, clothing and bedding. They also had a working farm and a place to do leather work. I’ve seen a few documents that list industrial-related revenue from the institution, but it didn’t itemize what was sold.

BLOOM: So you’re saying that some of the products were probably sold outside the institution, as well as being used inside?

Kim Collins: Yes. Shortly after the institution opened they had knitting and sewing programs. The people deemed the most capable were most profitable for the institution. But those who weren’t deemed capable still had to work. They did labour—caring for other patients on the wards. At one point, the institution had the lowest cost per patient in the Western world, in part because of the way that people were exploited.

BLOOM: How old were the residents?

Kim Collins:
When it opened it was primarily for adults. Then they started taking children. At first there were no children below the age of six. Then it became toddlers and infants. There are even stories of some women giving birth in the institution. The Orillia Asylum for Idiots had a connection to child welfare, so that when a children’s residence became full, the kids could be shipped to Orillia.

The building was built as a hotel, and then operated as a lunatic asylum, but it closed. The town was quite upset because it had been profitable. So there was a huge push from the mayor and other people to get the new institution functioning.

BLOOM: What types of disabilities did the people there have?

Kim Collins: They were assumed to be socially and economically marginalized and therefore labeled as ‘feebleminded.’ At that time, feebleminded was a catch-all term. It included intellectual disability, but also anyone considered ‘abnormal.’

BLOOM: How did you first learn about the institution?

Kim Collins: In 2014, I met Pat Seth and Marie Slark. They’re survivors of the institution who brought the class action lawsuit against the government of Ontario because of the abuse and neglect they suffered. During a talk, they asked listeners to be their union and to take up their story. Since then I have been working with survivors on a variety of projects to help share their stories.

BLOOM: What did you learn about how they were treated?

Kim Collins: They lived in horrid conditions. Abuse and neglect were commonplace. Over a number of decades medical inspectors noted the filthy and overcrowded conditions. Several reports mention blood and pus on bedding, dried fecal matter, patients bathing in toilets, patients sleeping two to a bed, and the constant and overpowering smell of urine and feces.

Toronto Star columnist Pierre Berton wrote this about the Huronia Regional Centre in the 1960s: “...After Hitler fell, and the horrors of the slave camps were exposed, many Germans excused themselves because they said they did not know what went on behind those walls; no one had told them. Well, you have been told about Orillia.”

BLOOM: How do you honour the memories of these children and adults through art?

Kim Collins: I used writing, textile, photography, paper art, and music, to present the research in an accessible way.

When I first began the project my focus was to embroider a casket liner with the names and numbers of those who died at the institution in the same colour floss as the liner. In this way, patient names and numbers are only visible through close inspection or through touch, through feeling—almost all but lost, as in the institutional documents.

As a way of marking and mourning patient 357, the nine-year-old boy who died, I highlighted the unknown names of patients who died in the institution by embroidering the word ‘unknown’ for every third, fifth and seventh name listed.

I realized early on in the project that photography would be an important addition. Photography was invented during the late 1800s and featured prominently in a number of mourning rituals. Local photographer Anne Zbitnew took a series of photographs of me embroidering the casket liner, in Victorian mourning garb.

While working on this project by the banks of the Humber River, I recognized the importance of sound: the sound of needle through fabric; the sound of water rushing over rocks; the sound of music as it embodies experiences. I worked with Toronto musician Jeff Scarrott, who composed an original piece of music in response to reading archival material and watching me sew the casket liner.

While reading medical inspection records, I noted that two reports outline the deplorable conditions and argue that cut flowers would make the situation better. So I took the death records from 1887 and made 15 paper roses—the sum of three plus five plus seven, again, in recognition of child patient 357. Crimson roses were used to symbolize mourning in the Victorian period.

BLOOM: How many people were buried there?

Kim Collins: There are 571 marked graves and numerous unmarked graves. Before the 1960s, people weren’t buried with names, only numbers. The graves marked with patient numbers have long rectangular stones. Grave markers have been moved and disturbed—both by people stealing them, and at one point the cemetery itself was dug up for the installation of a sewage pipe.

There’s a story that the local priest was in someone’s backyard and tripped over a paving stone. The stone flipped over and the priest saw the number and realized it was a grave marker.

The cemetery is exceptionally small. The number of people who would have been buried on that land over the 95 years the cemetery was used is likely much higher than the marked graves.

Survivors and allies are working together to ensure that those who are buried there are respected. They’re working to complete a registry of who was there.

BLOOM: What was the greatest challenge of this project?

Kim Collins: The process of bearing witness. My intention has been to feel through this research, not just think it. The process has been an emotional one. My stance is not that of the victim or survivor, but of the witnessing listener and empathic bystander. This has been a difficult position and process.

BLOOM: How did you cope with everything you were learning?

Kim Collins:
A spent a lot of time waffling between being exceptionally angry and exceptionally heartbroken. I spent a lot of time by the river, which was a place I could feel calm. At one point I had to stop reading archival material.

BLOOM: How did the children and adults die there?

Kim Collins: The archival records state the proximate cause of death but that reveals very little about how the people actually died. In the death records from 1887, for example, it states that some patients died from general debility. General debility can be caused by variety of illness and factors, including extreme stress, lack of sleep and inadequate nourishment.

BLOOM: How was their burial different from traditions of the time?

Kim Collins: Archival material reveals little documented evidence of burials.

Historian Julie-Marie Strange, in writing about pauper burials in England during the Victorian period, says that these burials highlighted the shame of poverty and resulted in the denial of mourning rituals and customs. Strange shares a newspaper article in 1892 in which the need for graves had outpaced the space available. Employees dug up the graves and smashed coffins in order to deposit the bones into a basket and then into a rubbish heap. This example, while from England, can offer some insight into how the small space of the Huronia Regional Centre Cemetery could potentially hold such a large number of bodies.

The archival records of Orillia do mention the lack of culturally sensitive burial rituals for Jewish patients.

For those outside of the institution, the Victorian period had strict mourning rituals. After the death of Prince Albert, the mourning practices of Queen Victoria became widely followed by all classes. Relatives of the deceased were to wear black clothing for up to three years as a public display of respectable grief.

BLOOM: Would the people in the Orillia institution have worn black clothing?

Kim Collins: Absolutely not. In the institution you wore what they gave you to wear. There was no personalized clothing.

BLOOM: Were you already an artist—or did you teach yourself how to embroider for the project?

Kim Collins: I grew up with an artistic and ‘crafty’ mother who taught me how to sew, but I hadn’t mastered the detail-oriented craft of embroidery. Despite having sewn for years, I felt it was important to follow the steps set out in the 1928 document. I attended sewing and embroidery classes with the intent of embodying each step in the industrial training document.

While the classes were useful, I would say that I learned embroidery by doing. I spent over 300 hours embroidering names, numbers and ‘unknown’ on the casket liner.

BLOOM: Will your project travel?

Kim Collins:
My plan is to exhibit the project. This will require the construction of a casket for the liner and I am currently researching how to construct a Victorian era style casket.

BLOOM: What did you learn?

Kim Collins: I learned that mourning leaves with us remnants of those we have tried to mourn. The dead now live within us, our bodies their crypts, and so through mourning we are forever changed.

BLOOM: What message do you hope people take away?

Kim Collins: I hope it engages people to think not only about the history of institutionalization and our complicity in that history, but also about the ways in which history repeats itself.

I’ve had comments on Facebook from people who lived in the area and didn’t know this had happened. They didn’t know that this had happened so close to them, and that the institution only closed in 2009.

I’d like people who know nothing about the institution to see the project.

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