In Canada, disability researcher says 'racism is very polite'

By Louise Kinross

Sadora Asafaw has worked as a special-needs coordinator in Holland Bloorview's Spiral Garden and as a recreation assistant running programs for the hospital's inpatients. She recently defended her master’s thesis in Environmental Studies at York University: Amplifying the Experiences of Black Youth with Developmental Disabilities and Their Families: At the Margins of Policy and Practice. Sadora did in-person interviews with eight members of four families. The youth with intellectual disability had autism or, in one case, a rare genetic condition. “Racism, socioeconomic status, ableism and gendered inequities produce institutional and systemic barriers that affect the care pathways of black youth and their families,” she writes in the conclusion of her study. We spoke about it.

BLOOM: What was the goal of your study?

Sadora Asafaw: To really hear the experiences of black youth with developmental disabilities and their families. In my research, when working at Holland Bloorview, and in looking at other community organizations, there is very little documented about the experiences of these families.

BLOOM: What do we need to know about the results?

Sadora Asafaw: How intersectional, or interconnected, some of their challenges are. So, for example, financial strain for families of children with disabilities isn’t a surprise. But in my research I learned that black people in Canada earn 75.6 cents on the dollar that non-racialized Canadians earn. I expected the financial strain of disability, but we rarely consider how these families have higher rates of poverty based on racism.

BLOOM: So it’s a double financial whammy.

Sadora Asafaw: For any family raising a child with disabilities, if you have money, you can try to offset some of those challenges. Money helps in your ability to cope with challenges and ease the strain. These families are marginalized by poverty based on racism, in addition to the extra costs of raising a child with disabilities. But I wasn’t able to find anything that looked at both in Canada—that disaggregated families with children with disabilities based on race. Organizations have just started to collect data like that to take a health equity approach.

BLOOM: Another finding was that most services for these families are located in higher-income areas, so not in the families’ own communities.

Sadora Asafaw: That is absolutely true. The families have to travel great distances, and it’s hard if they don’t drive. But another issue related to where the services are located is how these families manage challenging behaviours in their children as they get older and bigger. Almost all of the families told me they had been pushed out of a program in a higher-income neighbourhood, or were no longer welcome, because of their child’s behaviour when they became teens.

When their kids were a lot younger, they looked cute and organizations could accommodate them and their meltdowns. But as they got older, staff reacted with fear to meltdowns. When the youth grew to be six feet tall and black, they felt threatened by his behaviour. Some black families also felt that the policies of the organization were applied more harshly to them, and that staff responses were shaped by racist stereotypes of black males as threatening.

There was also a sense—in programs or at school or even in hospitals—that when a black parent was advocating on their son or daughter’s behalf, staff would tend to doubt or question whether the youth’s behaviour was part of their disability or they were acting out.

BLOOM: I know you also found families felt that their youth with developmental disability didn’t receive the best health care.

Sadora Asafaw: Yes. They explained how their child’s disability resulted in them not getting preventative care, where doctors would help identify potential areas of concern that needed to be worked on, as opposed to acute care. This fit with my research, where I learned that families of youth with disabilities—especially intellectual disabilities—are less likely to get preventative healthcare and health promotion.

BLOOM: There was an interesting quote in your study from a sibling who said her brother was very overweight and developed other symptoms and when the family pressed for answers, they were told he had probably had diabetes for some time and was in crisis.

Sadora Asafaw: When you add race and low income to the mix, preventative care is less likely to happen. If that family were high income and living in a community where they get preventative care, can afford many activities and are more aware of what to look for, it would probably be caught earlier on.

BLOOM: So there often isn’t proper monitoring of these youth for secondary health problems?

Sadora Asafaw: It’s not just monitoring. If a family is told they have to change their eating habits, and they’re living on a low income, what if they can’t afford fruits and vegetables? Or what if the youth throws away food because of texture, but the family can’t afford to pay a behaviour therapist for help, and there’s no community health centre to support the family’s needs? Health promotion may also look different for these families, or require more steps.

BLOOM: I know you talked about the cost and location of programs that were barriers.

Sadora Asafaw: I saw two things. Sometimes there’s an information dump about available services that leaves families feeling overwhelmed. They don’t know what to seek out, or how it may apply to their child.

On the other hand, sometimes workers recommend things that are so incredibly far from where the families live. If you’re working two to three jobs, and the program is on the other side of the city, and you have no transportation, how will you get there? Or families may not know that to get a spot in the summer, they have to register in the winter, so when they call, the program is full.

Enhanced care coordination alone is not going to address the challenges black families experience. We have to understand how intersectional these barriers are: the financial strain, and how that determines where you live, and where you live positions whether you can attend certain programs, and whether you can attend quality programs. We have to understand how a child’s challenging behaviour, and how it may be perceived as a threat, contributes to that family’s experience of isolation and lack of support. We’re talking about racism. And if we’re not confronting that in our policies and programs and practices, these systemic and institutional injustices will persist.

BLOOM: So you’re talking about how these families are marginalized in multiple ways, and how different kinds of discrimination stack up.

Sadora Asafaw: Yes. And if clinicians don’t hear about this from families, it may be because English is a second language for parents. Or maybe they’re from Canada and they’re afraid of encounters with doctors or teachers or other persons of authority. They don’t feel safe to voice their concerns through traditional reporting methods. They know that part of an organization’s protocol for their child’s escalating behaviour is to call the police. Writing a complaint doesn’t work for these families because it leaves them feeling more vulnerable to being penalized.

BLOOM: Something that really stood out for me in your study was when a mother talked about how she’d rather her son beat her up than call 911 for help, because police would treat him like a criminal. “They would handcuff my boy…make him freak out all the more and then because they’re going to go and take the situation out of my hands, because they’re probably gonna [say] ‘Well, you called us!...’ He doesn’t have language to speak and unless I know what cop is coming to my door…Nope! Not gonna go there.”

Sadora Asafaw: I hear about situations like that a lot. CBC just released a report that looked at deadly encounters and how black people are more likely than any other racial group to be a victim. But no one has dug deep to look at how this informs these families’ care pathways. You see how black, indigenous and other people of colour continue to be left out. We have to address all kinds of marginalization for these families when developing and promoting programs.

The South Asian Autism Awareness Centre has done some incredible and important work, but they’re doing it with very little funding and great demands. Families go there because they trust them and they’re able to meet people in their community.

BLOOM: So you’re talking about targeting care to different communities?

Sadora Asafaw: First we need to hear from those communities and understand what’s not working. Maybe we can work with local organizations that are culturally based. Sometimes faith plays a big role, so perhaps working with local churches or mosques or other sources of support. If service providers aren’t hearing from black families and aren’t seeing them in their programs and services, you have to ask why? What is a barrier? What leads these families not to feel comfortable?

We need to do more outreach to families that aren’t engaged. You know that saying in the disability community ‘Nothing about us without us?’ It applies to black folks and other indigenous populations. It’s not that we don’t know what to do. It’s that we’re not given the financial resources to develop the programs and the physical space to do it in.

People think that culture isolates everyone, and is why organizations can’t reach certain populations. But too often that’s used as a scapegoat to explain why families of diverse backgrounds are not coming to a program.

Families tell me they know right away when they walk into a place when they don’t feel welcome. In Canada, racism is very polite. You can go to a program and still feel pushed out through the words they’re using, or the way they selectively decide to apply policy, or in realizing that you don’t have the right words to apply for a service. How many people in the program look like your family? How many decision-makers look like your family?

How many black families begin a program and then don’t go back? It’s not just important how someone enters a program, but how they exit. Part of it may be that they’re protecting their own safety. When you don’t do something in the manner that the person in authority likes, you’re afraid about how they may respond. Maybe they will call children’s aid. Black families are far more likely to have their children removed by CAS than other racial groups.

It’s the same thing with the mother who didn’t want to call police when her child has a violent meltdown. She’d rather the child take it out on her, because she knows existing options won’t help her family.

BLOOM: What did families tell you things would look like in their ideal world?

Sadora Asafaw: One would be having a specialized centre or hub that is working to support specific ethnoracial groups with the needs and struggles they have. It would build community capacity of black and other racialized families, so they can gather community input along with the best evidence to inform their programs. It’s not that everyone there has to be black, but you would hope to see more people who look like you and are working towards the same goal.

When parents talk about support groups, they say they couldn’t relate to what was talked about in traditional groups, because their parenting challenges were different based on their ethnoracial background. I don’t know of any place in Toronto that looks at the specific needs of black families with youth with developmental disabilities.

The reason I focused on black families was that they experience some of the most difficult challenges, and are often afraid for their survival. They’re afraid they might not survive certain encounters when it comes to their safety. What would an organization look like where they could aspire to more, and feel they can participate and really belong?

BLOOM: I know we’ve begun to collect health equity data from families.

Sadora Asafaw: If someone calls a code white [for potential violence], is data collected on that? That might show biases within staff, or a way to better manage situations in future. Look at where certain groups are being served in the organization. Some families come directly from SickKids for rehab. But what about community programs?

Maybe the reason a community program is not diverse is because it’s not easy to get to. Holland Bloorview is in a high-income area where homes go for millions of dollars. Perhaps many of the people attending a program live in close proximity to Bloorview.

Look at the duration that families stay with a program. If families don’t feel comfortable, they won’t stay. What about families who are discharged from a program because the organization felt it couldn’t support them? Are there higher rates of black families discharged from programs, because too many codes were being called for their child?

The other thing I didn’t spend too much time on, but that some of the families touched on, was to recognize some of the similarities between black families and black workers in healthcare.

Black staff in this sector tend to be personal support workers or nursing staff. They’re frontline, not in managerial positions. They’re often in contract positions, so their roles are somewhat precarious. It may be very difficult for them to share their experiences of racism, given the politeness that accompanies it in Canada. If they’re constantly advocating for families who have experienced something they perceive to be different or unfair, they may be viewed as a troublemaker.

If you have less developmental pediatricians that are black, less occupational therapists that are black, less scientists that are black, you have less black people for staff to look to for mentorship and leadership. It’s great that there are a lot of black workers in frontline health positions. But you need to see them in management and leadership positions. Otherwise it can make it very difficult for black workers to voice their concerns or opinions or perspectives. 

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Why is using electric shocks on disabled students a non-story?

Members of disability rights group ADAPT protest the use of electric shocks on disabled students in front of FDA Commissioner Scott Gottlieb's home in Washington, D.C.

By Louise Kinross

What if you heard that a school used electric shocks on students for even minor infractions like refusing to take a coat off, closing their eyes for 15 seconds in their seat, or crying?

I first heard about the Judge Rotenberg Center (JDC) in Canton, Mass. WAY back in 2012. That's when I signed a petition by a former staff member to stop the electric shocks used against children and adults with autism and other developmental and emotional disabilities in their day and residential programs. That petition was signed by over 260,000 people.

In 2016, the FDA proposed banning the use of electric shock devices because it “determined that these devices present an unreasonable and substantial risk of illness or injury.” But the proposed regulation sits in limbo, and students at JDC continue to be shocked.

For the last two weeks, members of the disability rights group ADAPT have been camped out in protest in front of FDA Commissioner Scott Gottlieb's home in Washington, D.C. That's a photo of them above.

But no mainstream newspaper has covered the protest, or the story of the students who continue to be shocked.

Now the members of ADAPT have been told they'll be arrested if they don't vacate the camp they've set up.

In 2014, the Autistic Self-Advocacy Network wrote this history of the school's use of electric shocks over decades, noting it had been condemned by current and previous United Nations Special Rapporteurs on Torture:

"Children and adults at the JRC who are subjected to electric shocks are shocked on their legs, their arms, the soles of their feet, their fingertips, and their torsos," writes the Autistic Self-Advocacy Network. "Often, they are shocked for years, even for longer than a decade in some cases. These shocks come from a remote-controlled backpack, called a Graduated Electronic Decelerator (GED), which is attached to the student’s back. These shocks have been known to cause blistering and painful red spots on the students’ skin. Additionally, the GED-4 was created to be even stronger than the GED-1 and therefore has potential to cause more pain and more injury. Some students receive hundreds of shocks per day. One student received 5,000 shocks in one day...

"There is a disproportionate number of students of color within the JRC. Forty-five percent of JRC students are Black, and 28 percent are Latino. One psychiatrist who visited JRC described it thus: “Street kids, kids of color, carrying these shock backpacks. It is prison-like and they are prisoners of the apparatus.”

What is it about North American culture that makes physical abuse of disabled children and adults a non-story?

Last week, CBC reported 2014 Statistics Canada data that showed Canadians with disabilities are almost two times as likely as others to be the victims of violent crimes.

Way back in 2012, the World Health Organization reported that children with disabilities were 2.9 times more likely to experience sexual violence and 3.6 times more likely to endure physical violence than non-disabled children. This was based on 17 studies in high-income countries.

But in Canada? Aren't we better than that? Apparently not, according to our new data.

Judging by the lack of media coverage of the ADAPT protest, shocking disabled American children and adults in a way that's considered torture by the United Nations is not news.

For a personal story from a former JRC student, please watch this video. 

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Families find few options for future planning

Photo from White Coat, Black Art

By Louise Kinross

A couple of things converged on my screen this weekend about how families find, or to be more specific “don’t find,” housing and services for their adult children with intellectual disabilities.

First there was this podcast on CBC’s White Coat, Black Art, about a family whose 18-year-old daughter with severe autism is aging out of the pediatric system. “A day with Gilly, a teen with autism and developmental delay on the cusp of aging out of the system—and her parents who are expected to pick up the slack,” is how host Dr. Brian Goldman described it.

The family noted that they have signed up for Developmental Services Ontario, but that the wait list for a group home is 25 years. In the meantime, Gilly needs supervision in the home and even walking out to her school bus each morning. Her dad says that about 50 per cent of the time she refuses to get on the bus. At night, her parents take her out for four to five car rides, her favourite activity, before bed. She has limited speech. At 21 she will age out of school. Few day programs will accept a child with the kind of support needs Gilly has, said her mother Rachelle. Gilly is one of about 12,000 adults with intellectual disabilities waiting for housing and other services.

“Our fear is that there isn’t a clear plan,” her mother Rachelle said.

This family is not alone.

On Friday, I read about a U.S. study that found less than half of 388 parents of children with intellectual disabilities had made long-term plans about who will take over their child’s care if they, or another relative providing care, dies or becomes disabled. The parents ranged in age from 40 to 83, with children aged three to 68. More than 77 per cent lived with their parents or another relative.

Parents were asked whether they had completed 11 items related to their child’s long-term needs, such as identifying a successor to the current family caregiver, researching residential programs or establishing a special-needs trust.

The study, accepted for publication in the April edition of the journal Intellectual and Developmental Disabilities, found that over 12 per cent of participants had not taken any of these actions, while more than half had done only three planning activities.

Those three tended to be working on things like finding an attorney and discussing future care plans with their child and family. What they hadn’t done was take concrete steps to arrange housing or to write a letter of intent to guide future caregivers.

More than 61 per cent said the lack of residential, employment and recreational services to meet their child’s needs was a huge barrier.

“Nationally, 75 per cent of people with intellectual and developmental disabilities don’t have access to formal services,” says lead investigator Meghan Burke, a professor of special education at the University of Illinois. “It may be that many families think ‘why plan for services, when there are no services currently available?’”

Yes, that just about sums it up perfectly, from my perspective.

I wrote to Meghan to explain that even though I’ve worked at Holland Bloorview since my son was four, and I knew I was "supposed" to plan, I still don’t have critical pieces like housing figured out. And my son is almost 24 now.

With a wait list of 25 years for publicly funded housing, how can you plan, unless you have the money to purchase real estate yourself?

Meghan responded by saying that she can empathize with my situation because she has a 24-year-old brother who is on a wait list for residential services.

“I am also the parent of a child with a disability myself and am terrified for the future of my own child,” she wrote. “You are absolutely right—for future planning to occur, we need systems change. Point blank. Residential planning is certainly one, perhaps even the most, important part of future planning.”

But Meghan said there are other parts of planning that don’t depend on government services. “We looked at whether family members had discussed the future, decided on whether conservatorship or guardianship would be appropriate, developed a special-needs trust, or created a letter of intent.”

Other activities include sharing with family members a list of the child’s doctors and daily schedule, showing siblings where important documents like a trust or will are kept, or developing a support circle.

Money was a significant barrier to planning for more than 46 per cent of families, and more than seven per cent said the topic was too “emotionally loaded” for members to talk about.

When I first came to Holland Bloorview, I wrote articles about sibling issues. One of the most important things experts always said was to have a long-term plan, so siblings don’t assume care falls entirely to them when their parents die. 

But many families, like Gilly’s, and those in the U.S. study, and my own, don’t have housing pinned down. That makes it hard to talk with siblings, because there's such a huge unknown. On the other hand, we do know from research that siblings have anxiety about the future care of their brother or sister. I think these two realities put many parents between a rock and a hard place.

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Reporting on Illinois group home abuse wins award

Barbara Chyette holds a photo of her brother Lauren Braun, who choked to death on a hamburger on a supervised group home outing in 2014. He had no teeth and was unable to eat regular food unless it was cut into tiny pieces. Photo by John J. Kim/Chicago Tribune

By Louise Kinross

'Suffering in Secret,' a Chicago Tribune investigation into the abuse and neglect of disabled adults in 3,000 state-licensed group homes in Illinois, won first prize in the 2017 Katherine Schneider Journalism Award for Excellence in Reporting on Disability.

The international contest, by the National Center on Disability and Journalism at Arizona State University, is dedicated to recognizing excellence in covering disability issues.

Tribune reporters Michael J. Berens and Patricia Callahan identified over 1,300 cases of documented harm since 2011 in Illinois group homes, or their day programs, for adults with intellectual and developmental disabilities.

At least 42 deaths were linked to abuse or neglect. People who were only able to eat food that was pureed or cut into tiny pieces choked to death on regular food—including a hamburger and a marshmallow. Others died from untreated bed sores and undiagnosed illnesses. One resident, accused of stealing cookies, was beaten to death by a caregiver.

Berens and Callahan found a wide range of mistreatment: residents were mocked and intentionally provoked, bound with duct tape, barricaded in rooms, left in soiled clothing and denied food. They also looked at resident-on-resident assaults, in particular in homes where people with severe physical disabilities were mixed with those with histories of violence. 

Illinois officials told the reporters that the addresses of the 3,000 group homes, which house up to eight residents each, are secret, as are records of abuse or neglect causing death. The reporters filed more than 100 public records requests, but state files were so heavily redacted and unreliable they had to dig up information elsewhere.

Caregivers, often unlicensed and untrained, earn an average of US$9.35 an hour, the investigation noted. Ironically, the reporters found the state saves US$135,000 a year when it places a person in a group home, instead of an institution. 

Illinois' group homes are not bound by staffing standards and other rules regulating nursing homes.

Berens and Callahan are to be commended for shining a light on the personal stories of the victims and their families.

They talk about their work in this fascinating panel. 

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‘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. 

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The up and down reactions to one dad's parenting world

By Ron Bishop

Our son Neil is 14. He was diagnosed at a week old with cystic fibrosis. When he couldn’t hold up his head or sit at age one he was diagnosed with cerebral palsy and developmental delays. He didn’t walk on his own till he was 11—that was an amazing day.

It’s fair to say that Neil’s three favourite places are: a swimming pool, where he can engage in Olympic-calibre, slap-splashing; a set of stairs—any set of stairs, any size, any height, carpeted or not, anywhere, including those in buildings at Drexel University in Philadelphia, where I’m on the faculty—and the escalators at a local bookstore.

From the start of Neil’s fascination with the bookstore escalators, the staff has been kind and accommodating. My wife Sheila and I know many by name. Some days it’s almost like a scene from the classic television show Cheers, when Norm Petersen trundled in to the fictional Boston bar to enthusiastic shouts of “Norm!” Other kids have been castigated for their rambunctious escalator behaviour, but Neil rolls merrily on, up and down, laughing.

Once, when one of the escalators was shut down for repairs, a genuine look of sadness crossed the face of Tom, who like many of his colleagues has come to know what these visits mean to Neil. We improvised, of course; the malfunctioning escalator became a set of stairs. We cruised up and stepped down.

But while the store’s employees have been kind—so much so that Sheila and I sent a letter thanking them to the corporate office—it’s the range of public reactions to Neil, and his intellectual disability, that coalesced into the leaping-off point for my next book.

With apologies to the very talented people who created the hit movie Inside Out, when we go out with Neil the looks we get typically reflect:

Disgust, as if the person is thinking—but will never muster the guts to say—“how could these people bring him here?” Some sneer visibly at Neil. Some change direction to avoid any contact with him. Some act as though they might catch his challenges. Others grumble when he cuts, with no malicious intent, in front of them to get on the escalator.

Indifference is the look we most frequently experience, as if Neil isn’t even there. Maybe intentional indifference is more accurate; these folks see him, they just don’t “see” him. To be fair, it may be that they’re wrapped up in what’s taking place in their own lives—getting a book for school, for example, or trying to quiet a grouchy child.

Curiosity It’s as though they’ve come upon an animal seen only in the wild or are gawking at a museum exhibit. Kids most often display this look, although to be fair, it probably originates in a lack of exposure to folks like Neil. It’s actually a mix of wonder and…

Fear—Neil doesn’t notice it, thankfully. But Sheila and I have been brought to tears more than once by kids who cringe when they see him, as though they’ve seen a monster, and duck behind a nearby parent.

Happiness It’s heartwarming when folks express gratitude to Neil for purportedly keeping the escalator moving. “Are you helping us get to the top?” they’ll ask. “Thanks a lot buddy,” we hear now and then. Others just smile at him: some out of a sense of obligation, others to check off “was nice to a disabled person,” and still others just because they recognize that he’s a very compelling individual.

A couple of weeks before Christmas last year, a middle-aged couple who watched Neil for about an hour from a table in the café stopped us between descent and ascent and handed us a $25 gift card. They told us he was a beautiful young man—quite true—and asked that we use the card to buy him a present.

Finally, we have Emulation. Neil has inspired a small but dedicated legion of imitators, kids who watch the escalator, grasp and pretend to propel the handrails, and now and then follow us on our forays.

During a visit this past October, two young girls, probably 12 or 13, hitched about a 10-minute ride one step behind us. Others dip into the escalator shenanigans songbook, sitting on the steps, running up and down, and attempting the time-honoured “go down the up” and its just-as-exciting cousin, “go up the down.” Sheila and I cringe with fear and a little embarrassment when a kid gets in trouble with a parent or a staff member for wanting to hang out and ride.

I’d guess that for all of these folks—the nasty, the encouraging, even the kind—Neil’s presence at the foot of the escalator is unusual and unexpected. We’ve learned that families like ours, with a child with an intellectual disability, are often reluctant to go out in public.

My new book will dissect how the news media portray people with intellectual disabilities—as hopeless victims or spunky competitors who sink a basket after sitting on the bench all season. Rarely do we see people with intellectual disabilities celebrated for who they are as individuals.

A huge part of the book will be stories from families with experiences like ours. I’ve put together an open-ended survey to collect stories from parents about how their child is treated by the general public and family, and how this influences their lives. If you’re the parent of a child with an intellectual disability, please consider filling out this anonymous survey. Thank you in advance for your help!

Ron Bishop is a professor in the Department of Communication at Drexel University in Philadelphia. To speak with him about his upcoming book Holding Up The Sky Together, e-mail Ron at rcbsam@comcast.net.

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Stevie Wonder calls for inclusion amid reminders of dark reality

By Louise Kinross

This is a grim piece today. It's a reminder of the ugly, sometimes violent, discrimination that exists in our communities against those with disabilities.

Social media lit up a few days ago when Stevie Wonder demanded inclusion at the Grammys. "We need to make every single thing accessible to every person with a disability," he said.  

Everyone got behind him, celebrities, media pundits. Meanwhile, these were the dark realities flashing across my screen.

First I read this story about a 13-year-old Winnipeg boy with an intellectual disability who was attacked by men and thrown in a dumpster where he languished for hours in the freezing cold before someone heard his cries. "You don't jump a kid in daylight and nobody see it," his father told The Toronto Star. "My son can't identify them. But somebody can...Be my son's voice, somebody."

Indeed. Can you imagine what it took for these parents to contact the media after having their son thrown in the garbage? Who will speak for this boy?

Then there's the 26-year-old man with autism and developmental disability who's been living in an Ontario hospital for two years at a cost of $1,250 a day. He isn't able to care for himself and there's no housing for him in the community. He had to be put under to have 26 teeth removed, many of them in painful abscesses that caused a fever. No one noticed that his teeth had rotted. This man is one of three with autism living in the psychiatric unit of the hospital.

South of us students with behaviour and emotional problems at a Boston school were restrained "more than 200 times last year, the result of a 'systemic failure' by staff and senior administrators that led to repeated, improper uses of excessive force, according to a state report," reports The Boston Globe. The students, in Grades 4 to 8, were "slapped, tackled and yanked out of chairs for refusing to stand." More than 40 times students were restrained face down on the ground. Big surprise? Staff often didn't inform parents.

And here's a story about an acclaimed mathematics professor who moved his family from Belgium to New Zealand in 2011 because he heard it was a great place to raise a child with autism. After winning a prestigious New Zealand research award, he's returning to Belgium because his 13-year-old son with autism has been denied residency. He doesn't have "an acceptable standard of health" the family was told.

The stories didn't stop there. As I scrolled through Facebook and Twitter they kept popping up. But I didn't have the heart to include anymore.

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What's most important? Intelligence or emotional health?

By Louise Kinross

What factors in childhood predict later satisfaction and happiness in life?

Two articles crossed my desk about studies that come to vastly different conclusions.

The first article is about a study published in 2014 in the Economic Journal by London School of Economics (LSE) researchers. This study finds emotional health in childhood and later is the most important predictor of adult life satisfaction. 

Researchers used data from about 9,000 people born over a three-week period in 1970 and tracked by the British Cohort Survey, which has participants fill out a questionnaire about their lives every five to seven years. 

Emotional health, the LSE researchers found, is more important than education or income to future happiness. Least important, they say, is intellectual performance as a child. 

The second article is a piece I read on Saturday by Globe and Mail columnist Margaret Wente: The explosive science of genetics,

It suggests the exact opposite.

In it, Wente refers to a 2015 study in Molecular Psychiatry from Nature.

"Intelligence (as Dr. Plomin and others wrote in an influential piece in Nature) is 'one of the best predictors of important life outcomes such as education, occupation, mental and physical health and illness and mortality.' 

"Intelligence, one of the most heritable behavioural traits, is also an important factor in class differences," Wente writes. "Intelligent people are healthier, happier and stay married longer. They are also likely to marry each other and produce intelligent children. The implications for inequality and social mobility are significant."

The findings obviously have implications for parents raising children with intellectual disabilities. But I think they also relate in some ways to people living with physical disability. In both instances, people with disabilities tend to rate their quality of life much higher than their families or doctors and researchers do.  

The common view is that disability, of any kind, is a negative.

In NeuroTribes, Steve Silberman's groundbreaking new book on the history and nature of autism, he presents a different view.

He notes that Hans Asperger, one of autism's research pioneers, saw a child's gifts as "inextricable from their impairments." According to Asperger, the "positive and negative qualities" of a child with autism, or any disability, "are two natural, necessary, interconnected aspects of one well-knit, harmonious personality."

This reminded me of a piece by parent and author Rob Rummel-Hudson. 

In it, Rob argues that his daughter's differences are generative. "It changes everything about how she thinks and how she processes the world around her," he writes. "Those different paths are hard for her teachers and friends and even her family to understand, and impossible for us to travel. But they are her paths, and they are beautiful." 

I wrote about it here: Disability doesn't just take, it gives.

I wondered how the 'emotional health' researchers written about above would square their findings with the 'intelligence' scientists, and vice versa. 

So I sent an e-mail to each of the lead researchers.

I'll let you know what I hear.

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How difficult could caregiving be? This sister found out

By Louise Kinross

I caught part of this excellent interview on CBC's The Current this morning.

It's about Helen Ries's journey as an Ottawa woman who took over care of her adult brother Paul, who has Down syndrome. Paul, who works delivering mail at Canada Mortgage and Housing Corp., moved in with Helen and her husband after their mother died in January 2015.

Helen's built this amazing website aimed at developing a community of friends and family around her brother so that he can lead a rich life.

She documents her first year as his primary caregiver here in what she calls a failure report.

"I assumed that if I could take a few months off of my full-time work to organize supports, I could sort out our finances and apply to increase my brother's government funding, then hire a few people to help out," she writes. "Everything would be sorted out and I could get back to life as it was in about a year."

A year later, this MBA grad decided she had to resign from her job with the Ontario government. "As one other sister told me, it took her YEARS, yes that is right, years to right herself after becoming the sole caregiver of her brother."

On CBC, Helen talked about how damaging the assessment for supports was to Paul, two days focused on "what Paul cannot do" that led him to self-harm.

She also noted that money her parents had set aside in a Henson Trust can't be accessed because of limits imposed by the Ontario Disability Support Program.

Meanwhile, Paul hasn't been able to get an increase in Passport funding through Ontario's Ministry of Community and Social Services.

"I thought given his situation was truly a crisis he would qualify for some additional Passport funds so I could hire people to support Paul in his daily life," she told CBC.

Take a listen. Or send Helen a tweet. 

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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.

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What do disabled youth say about friendship?

By Louise Kinross

Youth with disabilities tend to have fewer friends and smaller social networks than their peers. And studies find that typical youth are more open to having a friend who has a physical disability than one with an intellectual disability.

Most of the research about friendship for people with intellectual disabilities is based on the perspectives of caregivers and support workers.

That’s why a three-year University of Toronto study called Voices of Youth is so innovative.

The project asks youth with intellectual disabilities aged 13 to 24 what friendship and community means to them.

“Friendship is very important for a happy life,” says David Conforti, a 25-year-old with an intellectual disability who’s a project consultant on the study. “I find it difficult to find new friends my age. We all need to feel connected to other people, that way we feel more safe and comfortable in our communities and lives.”

The Voices of Youth research involves three in-person interviews, including one in the community and one where participants are asked to invite a friend who will join them in an activity. A videographer is part of the research team.

“We’re videotaping to get less of an interview and more of an experience format,” says Shauna Eisen, an occupational therapist coordinating the study. “We want to make sure we catch a lot of different subtleties that we might miss in written answers. We also want to make the research accessible for people who might have difficulty communicating verbally.”

The research aims to get a youth perspective on “what friendship looks like and what some of the challenges may be,” Shauna says. “We also want to explore the definition of community, which is seen as vital for a balanced quality of life. Community engagement might be seen by some as physically engaging with neighbours or being part of different groups, or it might be an online presence.”

Researchers are working with three project consultants who have intellectual disabilities and three community organizations that work with people with intellectual disabilities (see photo of the team above).

One of these is Hand Over Hand, a non-profit in York Region that pairs volunteers without disabilities with youth with disabilities for monthly social events and activities. “I’ve seen the difference this peer-driven social experience makes from the individual’s perspective and from feedback from families,” says Shauna, who is a volunteer. “I’ve seen how much personality, how many skills and abilities are brought to light with this type of opportunity.”

Voices of Youth is wrapping up its second year and will eventually produce a video that incorporates what participants had to say about friendship and their experiences.

The research, a partnership with McMaster University, is supported by the Social Sciences and Humanities Council of Canada.

Participants are still being recruited. To get involved, e-mail Shauna at voices.ofyouth@utoronto.ca.

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Jim and the pursuit of happiness

By Karin Melberg Schwier

We think about my eldest son Jim’s happiness. A lot. What turns, straightaways, twists to take, what unexpected adventures there might be.

I get the same feeling this time of year when we drive out to the Rosthern Youth Farm corn maze on a Sunday afternoon. So much fun and so many possibilities. They give clues and you hunt for prizes.

Sometimes we hit a dead end. You never know what might be around the next corner. One time we even discovered an escaped pot bellied pig! Even so, there’s always the worry. What if we get lost along the way? What if we aren’t doing enough?

Happiness. Sure, I think about our youngest son Ben’s and daughter Erin’s well being, too. They’re all adults. Ben and Erin have their own spouses—Julia and Michael, respectively. Erin and Michael have a nine-year-old. So I think about the in-law kids, and grandson Alexander, too.

Our son Jim has Down syndrome. Helping him discover and nurture those things that will give him a rich batch of fun and adventure falls largely to us.

We take some paths. Many good. Others bottom out. Sometimes we get stuck. So the question of whether or not Jim is enjoying his life has set up full time residence in our heads.

Snuggled right up to that question are many others along the lines of “Are we helping him live a good life? What could we do better?” And every now and then, the old chestnut: “Why do we suck so bad as parents?” That doesn’t happen too often, but a tough one to chew on when it does.

Jim is 41. Green eyes. Killer smile. Blonde hair that now gets buzzed down by Aziz at JR’s Barbershop. Jim likes his hair “prickly.” He’s got a sly, dry sense of humour, but also loves good slapstick.

He used to talk to the point where we’d beg him to give us a break, but as he’s gotten older, he’s become more stoic and quiet. He wears two hearing aids and his right ear is pretty well shot, so speech is difficult. He just won’t if he doesn’t have to, or if he’s not motivated. However, “May I have a glass of chardonnay, please?” seems to come out very clearly at The Yard and Flagon pub.

Jim is a veteran volunteer at the Saskatoon YMCA; he’s been working in the laundry and maintaining the pool deck for 20 years now. It’s his solid base. We help staff tweak Jim’s routine now and then if things get a little stale, or if new staff need a little orientation on how best to work with Jim.

One of his coworkers, Heather, is a faithful advocate, always quick to get in touch when things are going well for Jim and on the days where he’s feeling a bit off. Since Jim was little, he’s always loved basketball (probably a genetic condition due to his birth in Indiana). Heather convinces Jim a few times a week to shoot some hoops with her in the Y gym so they both get a little fun break from the routine.

But while Jim has a solid job, which he looks forward to and enjoys most days, that’s just the baseline. We know it’s up to us to help Jim discover interesting, fun and enriching experiences. The colourful, spicy parts of life. It’s an ongoing pursuit. And that pursuit doesn’t lend itself to nice neatly defined goals.

Jim used to love drumming. When the theme music to Star Trek would come on, he’d leap up, race to his room for his snare drum, roar back to the TV room and pound out the beat. He loved Star Trek, too. These days, not so much. He’ll say, “Did that already” and that heralds the passing of the interest.

At first we fretted about that. But how many of us are still enraptured by the fascinations we had as prepubescents? (Not counting my lifetime commitment to Bobby Sherman, obviously.)

We try to help Jim make his own choices (tough when he’s pretty silent) while encouraging and, yes, sometimes insisting that he try something or participate when we are pretty sure he’ll enjoy it. Pitch in to volunteer at the community garden. Volunteer with us at the Friendship Inn. Usher at church with Dad. Write a “feel better” note to an old family friend in hospital. Let’s try watercolour painting. Ask a friend’s son to play badminton.

Jim’s got a few other things on the go. We travel a lot. When we’re home, Jim has enjoyed a lot of matches made through the University’s Best Buddies chapter; some good, some really great.

For several years, we hired a young man to meet up with Jim two or three times a month to do “guy stuff” like gokarting, shooting pool, going to the pub, trying a new restaurant. Jim helped Ryan out with home projects, volunteer jobs, and a drama group for at-risk adolescents.

Ryan and Jim often took Ryan’s toddler son Jack to the biology museum or for ice cream. But the relationship slowly petered out as Ryan’s own young family grew. We miss that one; Jack always looked forward to seeing “Uncle Jim.” It doesn’t mean it failed, but we have to try another path.

An important piece in this pursuit of happiness is finding other people. While we fret over the new things Jim might find joy in, we remind ourselves to relax and celebrate the good connections he does have.

We’re lucky to be in a position where I work at home so can be the one to take Jim to work, pick him up, go to appointments. Rick recently retired from the University, though he’s still teaching some.

We’re reinventing our roles with Jim. Not everyone can do that. We’re the conductors, but we don’t want to be “everything” in Jim’s orchestra. He needs other people who like him, people he will feel connected to and comfortable with. What we’re really after is to add a few more fun people to his life. It’s the tricky part. And we have to get past the fear of rejection if we ask and someone says no.

Back to that corn maze. If you’ve ever done one, you’ll recognize the journey. I think the trick is to keep looking around the next corner. We expose our children to things we think might spark even a tiny glimmer of interest and see where it goes.

If I can throw in another metaphor, Jim’s life is like a patchwork quilt in progress. A piece of this, a little of that, stitch that together here, this piece works with that but not with this one. We try to set aside the panic and frustration that it’s not all coming together fast (or even slowly!) and just try to enjoy the adventure.

Every couple of months, we email a little update about Jim to Jim’s siblings and nephew in California, and far-flung friends and family all over the world. Collecting a few photos and describing what Jim’s been up lately helps us have a good look at his life on a regular basis. Not only does it maintain Jim’s connection to a wide network of people, as we sort through photos and decide what to send, we’re reminded of what he really enjoys doing, what worked out, what we can build on.

Part of Jim's future happiness depends on what we do now to build those connections for him. There will come a day when one or both of us won't be around. We've written wills, designed a trust, established an RDSP. We've had many wonderful discussions with Jim's brother and sister, who both say they “have Jim's back.” They understand what a good life looks like for Jim and because they're an ongoing part of it (even though they live far away), we hope the transition won't be too gut-wrenching. Different, obviously, but a good life will go on for Jim with Ben, Erin and their families taking over. Their networks of friends know Jim, so those connections have already begun.

 

Sometimes we need to consciously remind ourselves to enjoy each other while all this searching for a good life is going on. We all stop and have a glass of wine on the back deck and play a game of Go Fish together.

Or we light the chimenea and ruin some marshmallows. We laugh. A lot. I probably suck at being Jim’s stepmom a lot of the time. But when he’s making a joke during Go Fish, or gives me a big smooch while my marshmallow goes up in flames, I think he feels his life is pretty okay.

And who knows? The more things we try, the better the chance of having an interesting, joyful life. Maybe we’ll even find another potbellied pig!

Karin Melberg Schwier is the author of several books. Her most recent is Flourish: People with Disabilities Living Life with Passion, available in Holland Bloorview's library. She co-authored Sexuality: Your Sons and Daughters with Intellectual Disabilities with Dave Hingsburger, and it's been translated into German, Italian and Korean. She also co-authored Breaking Bread, Nourishing Connections: Mealtimes for People with and without Disabilities with Erin Schwier Stewart. Click on her byline at the top to visit her website and find out about purchasing the latter two books. Photo by Richard Schwier.
 

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Did disabled man consent to sex with 'prof' who helped him type?

There is a fascinating and harrowing account in this weekend's New York Times Magazine about a relationship between a professor and a severely disabled man. 

The man, known as D.J., has severe cerebral palsy, doesn't speak, and has been diagnosed with a significant intellectual disability.

The professor, Anna Stubblefield, was formerly chair of philosophy at Rutgers University. She'd been asked by D.J.'s family to help him communicate through a method known as "facilitated communication," where someone supports the arm of a person to enable them to type. Much controversy surrounds the use of assisted keyboarding and whether the messages are generated by the facilitator, or the person being supported.

Anna was charged with, and found guilty of, two counts of first-degree aggravated sexual assault and now faces up to 40 years in prison. She said they were in love.

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'Neglect' contributed to autistic teen's death in NHS unit

By Louise Kinross 

In 2013 Connor Sparrowhawk (with sister Rosie) drowned in a bath following a seizure in a National Health Services treatment unit in Oxfordshire, England. He was alone.

Today a jury inquest ruled his death had been "contributed to by neglect" and said staff had poor communication with Connor's family and inadequate training and supervision. 

The 18-year-old had autism, epilepsy and intellectual disability. The NHS trust that ran the unit initially attributed his death to natural causes, but his parents called for an independent investigation that found his death preventable. 

Earlier this year we interviewed Connor's mother Sara Ryan, a senior researcher and autism specialist at Oxford University. "The staff had the knowledge," she told BLOOM. "They knew he was epileptic and I'd told them he was having seizures in there and was sensitive to medication change. They hadn't properly assessed his epilepsy and he was left unsupervised in the bath."  

Please take a moment to read the family's story.   

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