'Trust your instincts. That's what I tell parents'

By Louise Kinross

Fahima Afroze is a biomedical engineer with three daughters. Myreen, 11, has autism and Zafreen, 8, has cerebral palsy.

When Farzeen, now 4, was hospitalized at six months old, Fahima knew her way around the health system.

“They thought Farzeen had a bone infection, but she kept getting other infections,” Fahima recalls. “She caught hand, foot and mouth disease, and had yeast infections in her tongue. They brushed it off and said ‘she’s a kid,’ but my other kids weren’t that susceptible. I kept asking if we could call someone to look at her immune system, and they looked at me like I was the ‘crazy mom.’ One day a doctor left her medical record in the room by mistake, and I read it. I saw her neutrophils dipping to a dangerous level. Neutrophils are a component of the white blood cells. Without them, you have a suppressed immune system. When I showed the doctor, his eyes widened and he paged hematology and the cancer clinic. They gave us the diagnosis of Neutropenia, which is the body’s inability to make neutrophils. I knew something was wrong with her immune system! I had a maternal instinct about my child, and I was collaborating. But they were renowned specialists thinking ‘she can’t teach us our job.’ Trust your instincts. That's what I tell parents.”

With three daughters and three diagnoses, Fahima juggles over 300 medical appointments each year. “If they had the same thing, I could take them to the same appointments,” she says, but each child sees different specialists. Because she can never be certain about the length of visits, “I often have to drag the other two with us. Your sense of normalcy changes when you have a child with special needs. Our new normal is spending the whole day at hospital, or the whole day getting a leg casted.”

When she's not ferrying her children to doctors and therapists, Fahima is advocating for their inclusion.

One of her greatest frustrations is disability stigma. “It’s how people treat your special-needs child,” she says.

After her daughter Myreen spent a few years in a contained ‘community classroom,’ Fahima fought to have her educated in a regular class. “It’s the mindset at the school board that children who are differently abled don’t flourish in the regular class, and have to be segregated. They are very proud of their community classrooms.

“My whole philosophy is that there are no community classrooms in life. There is no community classroom in the workplace, in a place of worship or at an amusement park. We are expected to thrive in regular society. The school board is giving these students the mindset that they don’t deserve to be with socially ‘normal’ people. How do you impart social skills when you segregate students from society? Their peers are their best mentors.”

In the community class, Fahima says Myreen didn’t learn the regular curriculum. “They teach life skills, and it’s up to the teacher how she wants to teach life skills. My child was taught that the stop sign is an octagon for three years. Here’s a child who’s so bright, she knows all the polygons in the world.

“The community classrooms assume the students aren’t going anywhere. So while other students graduate with a diploma, they will graduate with a certificate. We’re closing doors on them before they’ve even tried life.”

All three girls are now in regular classrooms. “My kids have learned to manage in life,” Fahima says, yet they're socially isolated.

When Myreen joined a regular class, she “did well, getting lots of As and Bs. But she didn’t know how to handle the bullying,” Fahima says. “The other students put her up to do things, and she got in trouble. I proposed a buddy system, where an older student would support and mentor a younger student, and could be vigilant to prevent bullying. But the school didn’t do it. That would be going the extra mile.”

Fahima’s second daughter, Zafreen, is in Grade 3 on the ground floor of the same school. She wears leg and hand braces. Fahima is concerned about next year, when the Grade 4 classes move upstairs. She hopes the school will let Zafreen use the elevator. “Every time I ask for the littlest things, it’s like I asked for a kidney or money out of their own pockets, and the push back is crazy. I’m labeled as ‘that mom.’”

Fahima says it’s draining to advocate constantly. “How much can you preach and teach people along the way? I feel I’m doing this over and over again. Every year, I have to battle with a new set of teachers and reinvent the wheel.”

Because her children fall in a grey area, “they aren’t good enough for inclusion, but they’re too good for services,” she says.

Fahima pays for most of her girls’ therapy privately. “I have a new way of counting money,” she says. “I call it ‘therapy hours.’ If I see a $600 coat, I know that’s more than five hours of therapy, so I’m not buying that coat.”

Outside of school, her children tend to participate in adapted or special programs. “Even with camps, you have to choose the special-needs camps, because they will have the accommodations,” she says. “I can’t believe this is 2017 and I’m fighting for inclusion.”

Fahima recalls meeting a social worker who asked how she was coping with three children with chronic conditions. The social worker noted the increased risk of depression in parents who have only one child with disabilities. “I showed her my schedule of 300 plus appointments a year, and I told her I volunteer at places like Holland Bloorview. ‘I don’t have time to get depressed,’ I said.” Fahima laughs. “I guess I could pencil depression in on Tuesday, from 12 to 2.”

“I would be lying if I said it was easy. The hard work, the blood, the tears are too real. But, once you go past the grieving point, you have to hope for the better. You have to make the best of what’s handed to you.”

Volunteering keeps Fahima motivated and energized, she says. She co-founded the York Parent to Parent Support group, which helps parents advocate for their children at school and in the community. She also sits on Holland Bloorview’s Research Family Engagement Committee. “It’s a way for me to give back and a way for me to connect with people,” she says. “It’s not only my children whose social lives have suffered. When I’m volunteering, I don’t feel alone. I see other people in similar or even worse pain, and it’s a humbling experience. I get a reality check. I also like to share knowledge so that someone can learn from the lessons of my life. I hope that someone else may be able to bypass some of what I’ve experienced. And I feel supported when I hear other people’s stories. It’s not just me.”

Fahima recently spoke at a golf tournament by the Ontario Glass and Metal Association, which was dedicated to Holland Bloorview’s Family Support Fund. After talking about how her family has benefited from the fund, which supports equipment, recreation and respite, a participant offered to match the $3,000 that had already been raised. Most recently, she shared her story with Holland Bloorview research students.

Fahima became a family leader at Holland Bloorview even though her daughters are not clients. “We fall out of the catchment area because we live in Markham,” she says. “I’m allergic to the words ‘catchment area’ and ‘mandate.’ Every rejection letter I get has these words in it. We have nothing that compares to Holland Bloorview or SickKids where we are. Diseases don’t come by catchment area. It’s unbelievable that there would be such a difference in services just 40 miles from Toronto. I intend to speak to the CEO at Holland Bloorview about it, if I can.”

Fahima grew up in Iraq and Kuwait, and her family were refugees during the Gulf War. “When you’re a refugee, you’re not even treated as a human being,” she says. “You’re treated with no respect. You’re at the mercy of other people.” Eventually, the family was able to get a “flight from Jordan back home to Bangladesh.”

Fahima was studying engineering in Utah at the time of the 9/11 terrorist attacks. “I volunteered to speak about what it means to be Muslim, and that terrorism is not a religion,” she says. “No religion preaches to harm humanity. Instead, they preach unity, brotherhood and love for mankind. I wrote a paper called The Gulf War: Facts vs. Fiction and I got an A for it.”

Fahima came to Toronto 11 years ago. She is a Canadian citizen. Her oldest daughter Myreen hopes to be a surgeon and a pianist. She already has perfect pitch, her mom says. Zafreen wants to be a teacher. And Farzeen has her sights set on being a dancer. “We have the same dreams as any parent does,” Fahima says.

Like this story? Sign up to receive our monthly BLOOM e-letter in your inbox.

Read More

‘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.

Did you value this story? Click here to get our monthly BLOOM e-letter in your mailbox. 

Read More

On a conversation

By Louise Kinross

I was in an unusual situation last night while chatting with a small group of people I didn’t know.

One said she was doing an internship in a day program for adults with mental disabilities. This happened to be a program I had visited and had qualms about.

“What do you think of the program?” I said.

“It’s good. They do painting, and crafts, and games, and talk about the weather.”

The last one, about the weather, didn’t sit well with me, but I had no investment in this conversation and I just wanted to see how she would describe the program.

“But do you think it’s a good program for the participants?” I asked. What I meant was “is this a stimulating, life-enhancing program where the participants are learning skills and knowledge, developing interests and friends and being included in the community?”

“Well, the people who go there all have developmental delay,” she said.

Ugh.

I wasn’t sure how that had anything to do with the quality of the program. But more important, it told me nothing about the people as individuals. I thought about how the average person who didn’t love anyone with a developmental disability might interpret her response: “Oh. They’re different. Something’s wrong with them. Not much can be expected of them. They’re lucky to get anything.”

I wanted to scream about the individuality of each person, which couldn’t be conveyed in the term developmental delay.

The person then told me that the staff only helped the participants when they needed it, which I gathered she felt was an indicator that the program was good. Some were more independent than the others, she said.

“But it’s too bad that they’re separated as a group,” I said.

“It gives them something to do,” she said.

I hate that saying. We all need something to do.

“They go on field trips,” she added. But as a group, I thought.

It was a very odd conversation where I felt like I got a bird’s eye view into how a group of people are reduced to their disability.

There was nothing nasty about the person and I imagine she does her job well.

It just reminded me of how knowing a person as a person differs from knowing them as a label. And how hard it can be to get others to see past the label.

Read More