Collective advocacy must replace mother-led campaigns

By Louise Kinross

A decade of activism by British mothers of children with disabilities hasn’t produced positive change in the lives of disabled people, write two researchers in a fascinating article this month in Disability and Society. The authors—Katherine Runswick-Cole and Sara Ryan (photo above)—are disability studies scholars and parents to children with intellectual disability. “Despite the efforts of countless mothers of disabled children, and others, over the last 10 years, the outlook remains bleak,” they write. “We live in a world now where our children with learning disabilities will die on average 23 to 29 years before their peers (NHS England 2017), startling evidence of the limits of advocacy for, with and by learning disabled people.”

We interviewed Sara in 2015 about the preventable death of her son Connor Sparrowhawk, an 18-year-old with autism and seizures. In 2013, Connor drowned alone in a bath in a National Health Services treatment unit. 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. Last year, Southern Health in Britain was fined just over $1.8 million dollars for this preventable death.

Sara and Katherine, who are at the University of Oxford and the University of Sheffield respectively, argue that campaigns based on mother advocacy have failed for generations. Yet every new generation, not looking back, insists they’re pioneers in the cause. The authors suggest we need to move away from mother advocacy—which is undermined by a culture of mother blame, focuses on individual families vs. systemic problems, and pits mothers of young children with disabilities against mothers of adult children—to a new collective activism that brings all sorts of people together.

BLOOM: You note that many parents of children with disabilities believe that the general public just doesn’t understand the discrimination their kids face, and that if only they were made aware, changes would occur. But you don’t buy into that. You say you’ve been doing this work for 10 years and conditions in the U.K. for people with disabilities have only gotten worse.

Sara Ryan: Yes. There was a good chunk of solid policy in the U.K. at the beginning of the 21st century that engaged with learning-disabled people as human beings who we need to value, and who have aspirations. That positive movement has come to nothing. Things have gone backwards.

Ten years ago, we thought we were pioneers in raising awareness and we’d sort everything out. We didn’t realize the generations of parents and mothers who had done the same things we were doing. We disempowered the people who came before us.

BLOOM: You point to something I’m very aware of—which is a split between young parents of kids with disabilities and older parents of adult children, who have been advocating for a long time. I know when my son was young, I didn’t want to hear about the experiences of adults with disabilities because I wanted to focus on his unlimited potential. I wanted to believe we had the capacity to make big changes.

Sara Ryan: As young parents you’re totally fresh, and you think things won’t be as bad for your children.

BLOOM: In a way, you don’t want to hear about the real struggles of older parents.

Sara Ryan: I understand that. You’re facing something unexpected and unfamiliar, and you have a lot to grapple with. But it’s really unhelpful in terms of social movements and change if the movement is inherently fragmented when people break off when their children go into adult services.

BLOOM: It’s so short-sighted, to turn our backs on the families who have done the hard work before us.

Sara Ryan: It’s also sustained by big charities who almost 'groom' the younger parents to make them feel they’re pioneers in leading the way. These charities have been saying the same things for 40 years, and it’s not in their interest to say it hasn’t worked. They present their campaigns as something new for parents of young children, while erasing the work that’s been done in the past.

BLOOM: I guess promoting a campaign that focuses on young children—and the sense of possibility inherent in them—is more likely to be well received than one that focuses on the realities for adults.

Sara Ryan: Young children are cute. But there’s a change happening with young mothers today. There’s one mother on Twitter who posts a photo of her young son with Down syndrome beside the facts about the early death he faces. She wants people to think about that, and it’s really powerful.

BLOOM: You talk about mother blame in your article—whether we’re blamed for our child’s disability, or blamed for not doing enough or the right therapy, or blamed because our children are costly. How does mother blame influence the efficacy of social justice campaigns by mothers?

Sara Ryan: That’s an interesting question. In our original paper we were saying that mothering is an invisible endeavour, but by token of having a disabled child, your mothering becomes visible. You’re seen as a poor mother due to your child’s unruly behaviour.

When we began our campaign #JusticeforLB [LB stands for laughing boy, a name Sara used in her blog about Connor], there were attempts by the trust, the local authority and NHS England to blame me, or to cast me as an irrational mother, to diffuse the strength of our arguments. But what was unique about our campaign was that over time, the demand for answers became a collective endeavour by a diverse range of people. Most had never met us. That reduced the potency of the 'mother being the problem,' so our campaign was very effective.

BLOOM: You refer in your article to a new form of advocacy called unmothering. Can you explain?

Sara Ryan: It’s about loosening that expectation that the child and mother bond is somehow essential, and allowing other people to step up and be involved in a campaign—to take part and speak and act. If the campaign is just about a mother, it’s an individual focus, which is necessarily weaker.

BLOOM: You write that unmothering doesn’t devalue mothering, but disrupts ‘the idea that the mother alone is responsible for raising children.’ How was the #JusticeforLB campaign an example of unmothering?

Sara Ryan: It was the collective approach of it. We ran a campaign within the campaign called 107 days of action, to mark every day Connor had been in the unit before he died. We asked people to adopt a day to fundraise for our legal fees, or to raise awareness. We had a teenager who canoed 100 km to the House of Commons with a photo of Connor on her back. We had a Brownie pack in New Zealand that drew pictures of buses, which Connor loved. We had people who did lectures or sports events in Connor’s name. People adopted a day to do cake sales. These activities had nothing to do with mothers, and in most cases they were undertaken by people who didn’t know Connor or our family.

BLOOM: How did you get people who weren’t personally invested in your family to participate?

Sara Ryan: I’d been writing a blog about Connor, and early on it was really funny stories about the hilarious things he did. By the time he died, so many people were reading the blog, which was anonymous at the time, that they felt they knew him. That made the impact of his death more powerful. He wasn’t a learning disabled person. He was a fully fleshed out member of our family, and he was very funny. The fact that he was a beautiful young man with funny stories was what took hold.

BLOOM: Yet you note that storytelling by mothers hasn’t traditionally produced results.

Sara Ryan: I think stories are important, but I don’t think they make change. The Disabled Children’s Partnership recently launched a new campaign called #TheSecretLifeOfUs to raise awareness of the challenges faced by families. But the campaign is premised on the mistaken assumption that the lives of disabled children are hidden.

BLOOM: Yes, you note that children being excluded from school and bullied, and the isolation and poverty of families, has been well documented.

When Connor died, the NHS trust first blamed his death on him, saying he had died of natural causes. Then they shifted to criticizing you.

Sara Ryan: A day after Connor died, a document called a briefing on the mother’s blog was produced and circulated, which suggested that I might be troublesome because I’d written that Connor had had an earlier seizure. Blame is completely at the heart of it. The biggest example was before Connor’s inquest, our solicitor read transcripts of evidence given by staff. They said things like ‘My relationship with Dr. Ryan: I was very scared of her. She was unusual.’

BLOOM: As opposed to staff testifying as to why it was that Connor ended up behind a closed door in a bath where he had a seizure?

Sara Ryan: I had said to staff ‘Connor is having seizures.’ It kept coming up in the inquest that the defence for each of the staff members was that the mother was so difficult it was impossible to provide good care to Connor. When Connor was in the unit I wouldn’t have dared to be angry, for fear of retribution. We were so worried about Connor.

Read the annual reports of the British Learning Disabilities Mortality Review.

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Racism and ableism stack up against black moms, study finds

By Louise Kinross

Last month York University researcher Nazilla Khanlou presented results on a study of black mothers with children with developmental disabilities at the Racialized Maternal Health Conference in Toronto. Her team interviewed seven black mothers and three service providers to learn about the challenges the mothers faced and how these barriers influenced their own health. BLOOM did an interview, by e-mail, with Nazilla and two of her co-researchers—Luz Maria Vasquez and Attia Khan.

BLOOM: Why was the study needed?

Nazilla, Luz, Attia: According to the literature, racialized mothers of children with developmental disabilities bear a disproportionate burden of stress, illness and health inequities. They are triply marginalized due to factors related to their Black, Latino, Asian or Indigenous backgrounds; their gender; and because they are the main caregiver for their family. Studies associate these factors with poor health outcomes for mothers.

The study was needed because our programs to promote the health and wellbeing of women do not consider the specific experiences and needs of racialized mothers of children with developmental disabilities. Based on our previous studies, we discovered there was a need to reach out to this population to hear their specific perspectives on how society and institutions can support their wellbeing.

BLOOM: How did you define racialized mothers in the study? Were they all immigrant mothers?

Nazilla, Luz, Attia: We used the term ‘racialized’ to recognize the existence of power imbalances among the population that favour certain groups in our society and disadvantage other segments of the population. Some racialized mothers are immigrants, and others are Canadian.

BLOOM: What kind of questions did you ask in the interviews?

Nazilla, Luz, Attia: Some examples:

-What is ‘racism’ to you?

-What does a health-care provider or social-service provider need to know about your experiences with racism, and other barriers, to more effectively meet your needs?

-Who do you think can help you to do the things you want to do? (e.g. agencies, family, partner, friends)?

BLOOM: What were the key findings?

Nazilla, Luz, Attia: In this study we learned that the challenges of mothering children and youth with developmental disabilities increase when mothers are racialized. The added challenges of mothering a child with a developmental disability included the need to provide care around-the-clock, perhaps over a lifetime; financial difficulties; social stigma; being blamed for their child's disability; and lack of social support. On top of that, mothers needed to work extra hard to protect their children from racism and discrimination. 

BLOOM: It sounds like the first barrier they experience is the challenge of getting what their child with disability needs. And the second barrier is the racism they experience in the medical system and the community. Also, I noticed in your study that mothers felt stigmatized by their own families.

Nazilla, Luz, Attia: Mothers referred to the issue of service access and utilization. They felt they weren't treated equally, because of race, in learning about school and health-care resources. They felt service providers didn't give them adequate information. Some mothers felt service providers were intentionally unhelpful, or were saving those supports for other families.

One said: 'We will not have access to the same services, even the developmental services...you see how they treat the white people different than how they treat the black people. They don't give you the information that's available.'

In regards to their families, some mothers highlighted a lack of support and understanding about the specific needs of their children with developmental disabilities. They also felt socially isolated from their families.

BLOOM: I thought it was interesting that five of the seven mothers interviewed were single. Would we expect this in another population of mothers raising kids with developmental disabilities?

Nazilla, Luz, Attia: First of all, it’s important to highlight that there is stigma and stereotyping attached to marital status. In light of this, we, as researchers, don’t make assumptions about marital status among the different populations we study. In the context of our study, we understand marital status as an important factor affecting mothers’ health-promotion experiences.

As the mothers explained, lack of support from family members (including partners, husbands, mothers and siblings) is a key social determinant of their and their children’s health and wellbeing. This lack of support intersects with other determinants, such as employment, time, and other resources.

BLOOM: What were the strengths you identified in these moms?

Nazilla, Luz, Attia: Mothers discussed these strategies they use to cope with racism and discrimination in the context of raising their children:

-They teach their children about the reality of racism and how they have to work ‘twice as hard’ as non-racialized individuals.

-They practise and teach key values to their children like tolerance, respect and understanding. As one mother said: 'I raise my child to respect everybody, because I believe racism starts in somebody's house.'

BLOOM: What did the mothers suggest would help professionals provide better care?

Nazilla, Luz, Attia: A key suggestion was the need for service providers to be educated about the implications of racism in the lives of the populations they serve.

Service providers should be taught, as part of their professional development, the role that racism plays in limiting health promotion opportunities; that racism intersects with other social determinants of health, such as socioeconomic opportunities; and that stigma and discrimination are part of the everyday experiences of racialized mothers and their children.

In sum, service providers need to understand the negative impact that racism has in the lives of the mothers. Service providers need to be proactive and critical about how their own activities may be directly or indirectly reproducing discrimination or racism.

Mothers also suggested we need more service providers with diverse backgrounds; more information about services; more programs and services; and a hotline to support mothers.

BLOOM: You also interviewed three professionals who work with the black community. Were they seeing similar things with their clients that the mothers talked about?

Nazilla, Luz, Attia: The service providers we interviewed, who were of racialized backgrounds, agreed that racism exists in our society. But often racism is subtle, they said. People don’t outwardly say things, but hold strong beliefs that cause them to treat other people unfairly. Those on the receiving end may not call it racism, but talk about being disrespected or feeling insulted or shunned.

The service providers felt that racism was seen more in public places, like grocery stores and malls, but was less commonly experienced in health care. They believed that lack of socioeconomic resources—such as employment and family support—as well as language barriers, were obstacles to care, or negatively impacted the mothers’ health.

They noted that people are served on first-come first-serve basis, so people who are persistent receive the support they need. They felt diversity in the backgrounds of staff and volunteers and in program activities would help mothers feel welcome and included, and that they are treated fairly. Service providers said that they, and their colleagues, would not treat one person in line differently from another person.

BLOOM: What are next steps for this research?

To transfer our knowledge, including:

-to inform equity-based health-promotion practice policy for racialized mothers of children, youth and young adults with developmental disabilities

-to include on our website an information brief in plain language and one on video. Both will outline the health-promotion framework, and its application to racialized mothers, and other strategies will be recommended.

-to continue to disseminate findings across various venues. For example, we recently presented at the Racialized Maternal Health Conference, and at the LaMarsh Centre for Children and Youth speakers series. We will be presenting a poster at the upcoming Ontario Shores Annual Mental Health Conference.

BLOOM: If a professional takes one thing from this study, what should it be?

Nazilla, Luz, Attia: They need to reflect on how much they know about racism, and to acknowledge that racialization and racism impacts mothers’ wellbeing through their intersections with gender, privilege and power. Furthermore, they need to be critical about the assumptions or prejudices that inform their own everyday practices, and how they may negatively impact on the racialized populations they serve. Finally, service providers need to be proactive in terms of openly addressing discrimination and racism in the settings where they work.

Service providers told us that one size does not fit all. Programs that don’t really connect or resonate with the community that they’re serving are less likely to succeed. They also believed that programs need to be tailored to specific community needs. For example, they suggested dedicated programs for people who are new to Canada versus people who are born and raised in Canada.

Please watch this fabulous video about the York University study, which was funded by Women's College Hospital's The $15K Challenge. Nazilla holds the Women's Health Research Chair in Mental Health. You can follow her @YorkUOWHC. 

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Doctors need to get comfortable with intellectual disability

By Louise Kinross

Global developmental delay (GDD) isn't a long-term diagnosis, write two doctors in a commentary piece this week in The Journal of Pediatrics. So why does it appear so frequently in medical charts across a person's lifetime?

"Disability becomes the Lord Voldemort of clinical medicine—something so terrible it ought not to be named," write Dr. Eyal Cohen, a pediatrician at SickKids in Toronto, and Dr. Amy Houtrow, chief of pediatric rehab medicine services at Children's Hospital of Pittsburgh.

The doctors note that clinicians contribute to the stigma of intellectual disability by continuing to use the label of GDD. They attribute this word choice to doctors' unconscious bias against people with intellectual disability, to not wanting to upset parents, or to worrying that they don't have adequate time to explain the disability. "The unwillingness to name intellectual disability is widespread in medicine," they say.

They note that the word delay often causes confusion in parents, who assume it means their child will eventually catch up to peers.

Doctors need to be precise in using the term intellectual disability. "Disability is not a disaster," they write. "People with disabilities live with the realities of their disabilities every day, and our inability to acknowledge this does not stop them from being real; it just stops us from providing the best care possible."

The authors offer a suggested dialogue between a doctor and parents, who say they didn't realize their child's problems would be permanent.

It includes saying "I would be happy to talk more with you about the disabilities that he has...I know having these conversations can be stressful and sad."

Something that is missing for me, as a parent of a child with disabilities, is the message that my child has value. It's one thing to tell parents that disability is not a disaster, it's another to encourage parents to consider what it is that gives humans, and their child, value. I've written about this here: Why parents get hooked on 'normal'.

But I wonder how many doctors have truly had the time to sit and ponder human worth, either as a medical student or as a clinician? Is our value tied only to what we do? Is it something to be earned through how we perform? Is it our paycheque, our IQ score, or how well we fit Western conceptions of beauty and athleticism?

If we can't measure up, does our value as a human being plummet? 

Because if you haven't actually wrestled with these questions, I think it will be hard to convey to parents that their child with an intellectual disability has value. 

It's not something you can fake. 

It reminds me of an interview we did with the author of a study that looked at 68 transcripts of conversations between doctors and parents discussing life and death medical decisions for their children.

Lead investigator Dr. Tessie October, who is a pediatric intensive-care doctor at Children's National hospital in Washington, D.C. said: "We don't think of how we talk with families as being a procedure, in the same way we think of putting in a central line or a breathing tube." As a result, it's not taught and evaluated in the same way in medical school.

I think that needs to change, whether the topic is describing high-stakes medical decisions to parents, or telling them that their child has an intellectual disability.

Because that kind of medical training benefits the emotional health of families and doctors alike.

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Retarded, imbecile, morons. Why does The New York Times still use these words?

By Louise Kinross

I could hardly believe my eyes when this New York Times piece popped into my feed yesterday: Donald Trump and his Team of Morons.

Way back in 2012 I wrote to Philip Corbett, the Times' then associate managing editor of Standards,  to criticize the paper's use of the words "retarded" and "imbecile" in headlines. 

On Oct. 26 of that year, Corbett wrote to say "our health editor and our mental-health reporter both agree that we should give stronger guidance to the newsroom about the use of 'retarded.' I will be working with them to draft a new style note."

Retarded. Imbecile. Morons. They're interchangeable, and they all originate from medical words used to describe people with intellectual disability. 

Seven long years ago, the American Psychiatric Association stated that "Mental retardation is no longer used internationally [as a medical term] or in U.S. federal legislation." 

The words retarded, imbecile and moron are not neutral words. They are slurs used to demean a marginalized population. Odd that the Times would continue to use them, when its own style guide counsels neutral language and respect for "preferred group descriptors."

People with intellectual disabilities have spoken. Everyone is familiar with the 'R-word: Spread the word to end the word' campaign. Almost a million people signed a pledge at the website in support of ditching the use of the word retard for a simple reason: It hurts people.

Imagine if the Times, instead of using the word 'morons,' had selected a word that stigmatizes a different group. What if they had written "Donald Trump and his Team of Psychos." Would anyone on the news desk have raised a red flag? Probably, because people with mental illness are a more powerful group than those with intellectual disabilities. 

Why, at arguably the world's best news organization, are editors incapable of coming up with something more imaginative and neutral than a slur for a headline? Why didn't they try: "Donald Trump and his Team of Twits." Anyone can be a twit. A twit is not associated with any devalued group. A twit, as described in the dictionary, is neutral: "an insignificant, silly or bothersome person." 

In a back and forth correspondence with me in 2013, Corbett wrote: "While imbecile,' 'moron' and 'idiot' were all used in the past to refer to people with intellectual disabilities, I don't think most modern readers or speakers of English make any such connection today."

It doesn't matter what individual staff at The New York Times "think." It matters that the paper follows its style guide and shows respect for marginalized groups. A memo to staff on ableism is in order. 

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Green acres is the place for me

By Louise Kinross

In 2014, Maya Wechsler and Greg Masucci made a drastic life change. They moved from a row house off a busy street in Washington, D.C. to a fixer-upper house on 24 acres in Bluemont, Va. They were tired of fighting for a good education for their son Max, now 10, who has autism, and wanted a simpler, safer life for Max and his sister Delilah. It wasn’t part of the initial plan, but since making the move they launched a non-profit called A Farm Less Ordinary, which hires about a dozen adults with intellectual disabilities to grow, harvest and sell organic vegetables and herbs. They hope to expand into producing jams, pickles and pesto. Maya and her husband Greg still work full-time jobs. BLOOM interviewed Maya to learn how the family swings its busy schedule.

BLOOM: I understand your husband was a realtor?

Maya Wechsler: He still is. He’s at a closing right now. I still work too. I telecommute with PricewaterhouseCoopers as a proposal manager.

BLOOM: You both work full-time, in addition to running the farm?

Maya Wechsler: We do work around the clock, but we have a farm manager this year, which makes life a little more livable. She schedules the employees and about 20 volunteers.

BLOOM: Can you describe your son Max?

Maya Wechsler: Max is non-verbal, with autism. He’s always looking for sensory input and needs to be running around outside. He needs full-time care and we have someone to do that while we’re working. The farm is for people like him, but I’m not sure if Max will ever be able to work here. I don’t think he has the attention to detail to be harvesting lettuces.

BLOOM: What does he love?

Maya Wechsler: He loves jumping, screaming, going for walks and hikes in the Blue Ridge Mountain. He loves our animals and we’re thinking of increasing the number of animals we have. He loves music videos and listening to Harry Potter. He’s home-schooled, but not by us.

BLOOM: What was life like when you lived in the city?

Maya Wechsler: We were fighting non-stop with the public school system. We were fighting to get a private placement for Max. A lot of bad things happened, which I’m not going to talk about. We were going to have to fight again to get more funding, and we couldn’t take it anymore. That’s why we decided to move out here.

BLOOM: How did you figure out when your son was so young that you wanted to make such a big life change? I have an adult son who could benefit greatly from your program, but I haven’t done anything so drastic.

Maya Wechsler: When we moved to the country, having a non-profit farm wasn’t part of the plan. We just wanted to get out of the city and away from the traffic and fighting with the school. Then when we got here, we thought what a waste of the land. I have a comfortable history of teaching myself stuff—I taught myself photography and ran a photography business. We had always been doing advocacy for people beyond our son, and were politically active, and we didn’t really feel right about giving all of that up. There are so many teens and adults with intellectual disabilities who have a lot of time on their hands and a desperate desire to work.

BLOOM: How does the farm work?

Maya Wechsler: We grow vegetables and herbs and are working on fruit. We’ve planted some blueberry and strawberry and raspberry plants and our goal is to move to value-added foods like jams and pickles and pesto. We’ll always grow veggies and we have a membership program where we deliver harvest once a week in crop boxes. We also have a contract with a food bank. Today we’re harvesting for a big delivery of fresh produce for low-income people. We also do a farmer’s market and a lot of fundraising, and hope to get more grants.

BLOOM: How many employees do you have?

Maya Wechsler: Twelve. They have intellectual or developmental disabilities or mild mental illness, such as anxiety and obsessive compulsive disorder. We’re not equipped for people with physical disability. Some people can drive themselves here, some people get rides, and one person comes from a group home with his job coach.

BLOOM: Is the work seasonal now?

Maya Wechsler: We operate from mid-March to the end of October. We’re trying to raise money for a true greenhouse so we can grow through the winter and have people come all winter. We have the employees, if we can just get the funding. We run six days a week—Monday through Saturday. When they’re not working here, our growers have nothing to do all day long. They sit around, watch TV and get bored.

BLOOM: What do they get paid?

Maya Wechsler: They start at minimum wage and that progresses, with initiative, up a dollar during the season. If they come back next season they get another dollar raise.

BLOOM: What has been the greatest challenge?

Maya Wechsler: Doing it all while parenting and working day jobs. Your energy really takes a hit. First of all we’re exhausted at the end of the day, but we also have back aches and knee problems, so we’re trying to build this up while we still have the stamina, and then hand it off to someone to manage.

BLOOM: How does it compare to the life you had in the city?

Maya Wechsler: As a family I’d say it’s busier than what we aimed for. But it’s also satisfying because there’s a cycle to the seasons that is pleasant. We literally slow down during the winter, according to the grain cycle. It’s also very satisfying because the kids can be outside freely—we don’t have to worry about them being kidnapped or hit by a bus.

BLOOM: How has it changed you?

Maya Wechsler: I’ve become more self-reliant. These country skills that we scoff at as a city person, you realize how valuable they are. We’ve learned to do a whole lot ourselves—from fixing tractors to canning fruit.

BLOOM: I was surprised that you both work and manage the farm.

Maya Wechsler: Autism costs a lot of money. There’s a lot of therapy, and we can’t afford to home school ourselves. Greg and I don’t even get paid from the farm yet. For anyone considering running a farm like this, at least one person has to work off the farm, especially in the United States, due to our health care system.

This is a fabulous Upworthy video about the family.

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Horrific conditions led to two preventable deaths

By Louise Kinross

Two stories about horrific, entirely preventable deaths of people with disabilities crossed my desk.

In one case, a British woman with Down syndrome died of sepsis—a blood infection—in 2015 because nurses at the home she lived in left a blocked catheter in her for months. Her name was Sandra Miller.

In the other, a 13-year-old Wisconsin girl with who was unable to walk, talk or care for herself, died of sepsis after her mother abandoned her for days during the Memorial Day weekend last year. She was found by police in a diaper weighing 1.25 pounds. She had a rare syndrome called Wolf-Hirschhorn and lived alone with her mother. Her name was Brianna Gussert. She is pictured above with her father Greg.

These were slow, painful, entirely unnecessary deaths. Let's give Sandra and Brianna a voice in death that they obviously didn't have while alive.

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Southern Health fined $1.8 million in death of Sara Ryan's son

By Louise Kinross

Yesterday Southern Health in Britain was fined just over $1.8 million dollars for the preventable death of Connor Sparrowhawk, an 18-year-old with autism and seizures who drowned alone in a bath in a National Health Services treatment unit in 2013. 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.

Connor's mother Sara Ryan (above left) had warned staff that Connor appeared to have bitten his tongue and was disoriented during a visit, suggesting a seizure. But he was allowed to bathe unsupervised behind a locked door, where he drowned.

Because of Sara's tenacity, more than 1,000 unexpected deaths of other Southern Health patients with intellectual disabilities or mental illness, that hadn't been investigated, were uncovered.

BLOOM interviewed Sara in 2015: Son's death sparks a search for justice.   

In her statement from the family yesterday, Sara wrote:

"No one should die a preventable death in the care of the state. Learning disabled people should not die on average 20 years before their non-disabled peers. Families should not have to fight for answers and accountability."

A 2013 inquiry into the deaths of 247 adults and children with intellectual disability in England and Wales found women with intellectual disability died 20 years earlier on average than the general population, and men with developmental disability died 13 years earlier. Over a third of the deaths could have been prevented with good health care. 

Photo below of Connor with his sister Rosie.

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How Western ideas about success fail disabled youth

By Louise Kinross

Much has been written about how using normal development as a rehab benchmark sets disabled kids up to fail and devalues different ways of being in the world.

Now a new study looks at how Western ideas that equate adulthood with independence, work and education marginalize young adults with developmental disabilities—and their parents.

“When transition policies and practices for disabled youth are shaped on achieving this ‘normal’ adulthood, how does that disadvantage youth who aren’t able to participate in valued ways?” asks Yani Hamdani, an occupational therapist who won first prize in the 2017 Bloorview Research Institute Pursuit Awards for her PhD research.

Yani analyzed three Ontario policies aimed at moving youth with disabilities into adulthood, and interviewed the parents of 13 young adults with disabilities like autism, cerebral palsy and Down syndrome. All of the young adults had an intellectual disability and some also had physical disabilities.

One of the most interesting findings of her research is that parents neglect their own lives and health to coordinate meaningful things for their adult children to do.

“We put this expectation on parents to raise this ‘ideal’ adult, but we don’t have anything in the policies to address what happens if the young person doesn’t get there,” Yani says. “These parents are so busy trying to create community life for their children that they don’t spend time with their friends, they don’t do things for fun, and they can’t retire when they want to, because they have to pay for programs and supports. Services are so incomplete that when children leave school the family has to run a five-day program to replace it.”

Yani says she became interested in her research because she used to develop transition programs for youth at Holland Bloorview. “We were starting to do a really good job of transferring clients to adult health care, but many parents I’d collaborated with later talked about the significant challenges they faced in creating a life for their child when they left high school” and services dried up.

Yani’s study used a critical policy analysis approach to “identify and unpack taken-for-granted ideas about disability and what constitutes a ‘proper’ adulthood, and how these shape policies and practices.”

What she found in Ontario policies and interviews with parents were implicit assumptions about a normal adulthood that position disabled teens as problems in need of intervention, Yani says.  

The transition policies—one from the world of rehab, one from education and one from developmental services—“place emphasis on normal ways of being, becoming and acting like an adult,” Yani says. For example, the education one “focused on the idea that almost all students will transition to work, further education or community living.”

These policies are well-intended and help some disabled youth set and reach goals for moving out on their own, going to university or working, Yani says.

But they exclude and marginalize those who can’t. “What is the experience of hearing that you need to be fixed for your whole life?” Yani asks. “How do you internalize that, in terms of who you are in society and what people think about you? While these policies aim to help, they perpetuate ideas about who is valued and who is not.”

One policy attempts to convey diverse ways of living as an adult, but refers to the goal of active citizenship. “What does active citizenship actually look like if a person is not physically or intellectually able to participate?” Yani says. “Is being inactive or passive less valued, and to be prevented?”

For young people who don’t develop typically, we need to think beyond the transition to adult services to health and wellbeing over a lifetime, Yani says. “We need policies and interventions that promote health and diverse ways of living a good life, and that recognize that the Western ideal of adulthood isn't possible or desired by everyone.”   

In thinking back to her time working with families on transition Yani says, “I needed more education and training on what a good life could look like if a person wasn’t going to go to work or college. And I needed to be able to talk about these possibilities in a way that didn’t imply they were less valuable than traditional paths.”

Yani says clinicians need to start talking with families about unconventional futures for their children. “We need to talk to families about a variety of ways of living well, and what they might look like.”

Yani says her findings need to be shared with policy makers and to be part of the dialogue at the beginning of research on transition.

Instead of looking at disability as a problem that needs to be fixed, Yani says we need to embrace diverse ways of living, and view disability as a kind of difference, like we do race, gender or sexual orientation. “We need to free people from social ways of thinking that, left unquestioned, marginalize or disadvantage them.”

Yani was surprised that despite the extraordinary efforts of parents in her study to support their adult children, they didn’t describe this unpaid work as onerous. “There’s a social pressure for these parents to create these lives for their children and to take on the stress, almost without complaint. Our policies are silent on the mental health and social consequences of that for parents.”

Yani notes that some parents did use the word “burden” when describing their fears about care for their disabled child falling to a sibling. “It’s not proper for a parent to say that they feel burdened with this situation, but they do talk about not wanting to burden another child. I found that really, really interesting.”

For youth with developmental disabilities, Yani says we need funding and services that focus on family wellbeing over the lifespan. “Not all parents and youth want the same things, so there isn’t one answer. That’s why we need very flexible policies and supports.”

Yani Hamdani (below left with scientist Amy McPherson) completed her PhD in Social and Behavioural Health Sciences in 2016 at the Dalla Lana School of Public Health at the University of Toronto. 

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France upholds ban on Down syndrome ad: Children too 'happy'

By Louise Kinross

In an extraordinary decision, the Council of State in France has upheld the decision of the country's TV regulator to prevent this video, whose message is that children with Down syndrome can be happy, from being seen on French TV.

The ad, launched by Italy's CoorDown and Satchi & Satchi for World Down Syndrome Day in 2014, has been viewed on Youtube over 7 million times. It won six awards at the 2014 Cannes Lions International Festival of Creativity.

The idea for the ad came when CoorDown received an e-mail from an expectant mother whose child had been diagnosed with Down syndrome: "I'm scared," she wrote. "What kind of life will my child have?"

The ad, called Dear Future Mom, is a response from a number of children and teens with Down syndrome. "Your child can be happy" is the message. "He'll be able to hug you" says one young man. "He'll be able to go to school" says another young woman, "and work and earn his money" say two girls.

In June of 2014, the French TV regulator said it was "likely to be controversial" and was not "a message of general interest." Earlier that year several French channels had aired an excerpt free of charge at the request of Down syndrome associations.

According to Fondation Jérôme Lejeune, a French Down syndrome research and advocacy group, the original decision to censor the ad came after complaints from two women who had terminated pregnancies due to a prenatal diagnosis of Down syndrome. They issued a news release last week suggesting the Council of State wanted to hide pictures of children with Down syndrome who look happy.

The TV regulator considered the ad's message likely to "disturb the consciences of women who, in accordance with the law," had chosen to have abortions, this article in Le Monde reports.

Jérôme Lejeune had asked the Council of State to intervene on the regulator's ban. It says it will bring the matter to the European Court of Human Rights and argue that people with Down syndrome have a right to express their happiness without censorship.

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Confessions of a 'super sister'

By Helen Ries

For many of us, the sibling relationship is the longest and deepest relationship we experience in a lifetime.

This is certainly true for my brother and me. When he was born in 1972 he didn’t come home from the hospital right away. The doctors told my mother they needed to run some tests.

I can still remember my deep disappointment that the promise of a baby brother was taking so long to materialize. When he did finally come home, there was nothing better than dragging this baby around, dressing him up and pretending to feed him.

As we got older, he was my constant shadow. I made sure he was included as we played games with the other kids on our street. He was always there and under my constantly protective eye. I went away to university and then spent many years living in other cities trying to make my way in the world. Our bond faded, but didn’t weaken.

Recently we’ve become very close again.

Sadly, our parents both passed away unexpectedly within a short period of time. My brother came to live with me and my husband, and we became his primary caregivers. I had always known this day would come, but it was never really discussed as it was a painful and seemingly fictitious conversation that I wanted to avoid.

The change was shocking and difficult for all of us. Unlike me, my husband didn’t have a lifetime to anticipate becoming the primary caregiver of a person with Down syndrome.

Sibling caregiving is complex and very different from the parent-child relationship. My brother is his own decision maker. I am responsible but without authority.

As siblings, you are close because of circumstance, not necessarily choice. You are honouring family values and unspoken parental wishes but you also have your own to consider. You walk the grey line of ethical decision making every day and in everything that you do.

I wonder continually: “Is this decision about him, or about me?” 

These conditions are ripe for the emergence of the ‘super sister.' I am a super sister. I am not the only one. There are lots of us out there. Super brothers, too. As a super sister I have taken on this caregiving role with my whole heart and then some. It comes from a place of deep love.

I have shifted a lot of energy that was focused on my own life to my brother’s life. I organize, plan, arrange, boss and frankly dictate so much of my brother’s life. I feel I have to do it this way because I am new to this job and I don’t know how else to do it. If I throw everything I have into it, everything will be all right, right?

I have been a super sister for one-and-a-half years now and I’m thinking that it’s time to retire my cape. Or at the very least find a spot for it in my closet.

Over the last year I’ve learned that even the mightiest of us super sisters can’t make pain go away, do everything right or be wholly responsible for creating a good life for my brother.

When you love someone deeply and for a lifetime you want them to be happy. I think this is especially true when that person has a disability.

I know that the pain my brother has dealt with in a lifetime has superseded my own. I have not faced discrimination and prejudice daily. I have been able to make my own choices, accumulate assets, enjoy good health, have many friends and do so many other things I take for granted. My brother has watched all of this and wondered why life has been different for him. When our parents died, super sister was all over his pain, trying to scrub it off his life because that is what seemed fair.

I could articulate my pain, rationalize my grief, and express my feelings in a way that brought me relief. But my brother could not.

So instead, I provided an endless roster of tonics: from tubs of ice cream to a new cat, from singing childhood songs to taking him on an exotic trip. On a daily basis he got a speech about what our mother and father would have wanted for him, how he shouldn’t be sad, how he has so many good things in his life. One day he told me: “Leave me alone.” The shine fell off my super sister costume that day. After that, I tried to take a back seat.

One day recently someone was rude to my brother on the city bus. Actually it was beyond rude, it was harassment. I overheard it, because we were on the phone together at the time.

I cried and was lost in despair about it. How can people say those things? Don’t they know what he’s been through?

My brother yelled back at the offending passenger: “You are not very nice and you should watch your mouth.”

Later on, when the drama had subsided, I realized that being super sister had been all about me. He doesn’t need super sister. He just needs me. And only sometimes. This letting go is something I’m trying to figure out, and I don’t think I’ve quite got it yet.

It’s hard to accept as a super sister that you can’t erase pain. It’s hard to accept that you have to back off and let people be, let them travel their own path, and allow them to get there in their own time.

Even the deepest and longest relationship in a lifetime has its limits.

Helen Ries is a writer, community activist, and professional consultant, and is also in the role of primary caregiver of her brother, a person with an intellectual disability. Helen’s work aims to build caring communities, better programs and smarter social policies for a more inclusive society. You can connect with Helen on Twitter @helenries  or through her website greatriverconsulting.ca. Or visit The Sibling Network, a Facebook group Helen created to provide information and support to caregiving brothers and sisters.

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Why my sister was the best maid of honour

By Kayla Smith

When my sister Christy was born, I had a lot of plans and dreams that grew to fill the empty spaces in my life. I think this happens when little-girl wishes come true. Most of my aspirations were pretty typical. She would be my best friend, my late-night confidante, the student in my classroom, and the mannequin in my hair-salon. My partner in crime. My taste-tester. My maid of honour. 

Fast-forward 10 years, and my sister had been diagnosed with autism and a significant intellectual disability, among other things. Given her exceptionalities, I had to let go of many of these dreams.

I gave up trying to make her sit through my hair experiments and classroom lessons. Sometimes I would talk to her late at night, but it's hard to talk to someone who can't respond. She was pretty selective with her food (for a few years, her meals consisted of bananas and strawberry yogurt), and she didn't know how to keep secrets. Despite all of these things, there is one dream I never gave up on: my sister would be my maid of honour.

So, when Ryan proposed to me, my “proposing” to Christy was the first thing I checked off my list. I didn't think twice about it. I had known my whole life that my sister would be the one to stand next to me on the best day of my life, and, as someone who is usually packed full of worries, I can honestly say there wasn't a doubt in my mind that it was the right (and best) decision. This was all confirmed when Christy began to introduce herself to every person she met as “Kayla's maid of honour” and refer to her navy-blue dress (that was identical to the other bridesmaid dresses) as the “special maid of honour dress.”

Then the questions started coming. The questions I never could have imagined.

“So... who's going to, you know, do the actual maid of honour stuff?”

Since Christy has a hard time with planning, it made sense that this was a concern for some people.

“My mom is the queen of organization,” I told them. “My other bridesmaids will support my sister, and naturally, I will be super-involved with every detail.”

“Well, that's good... but will she be able to make it through the day? Like, what if she can't?”

“Okay, so maybe she won't, or maybe she will.”

To be honest, this didn't matter to me. I wanted my sister there with me. Whether she cried, laughed, sat, stood, took two pictures with me or 20, it wasn't important. I wanted to experience the day with her there, and I knew that's all she wanted too.

“Okay, but seriously, who is going to be your actual maid of honour?”

This is where things started to head south for me, and I was afraid steam might come out my ears.

Fact Number One: I am extremely protective of my sister. I'm usually a very gentle and quiet person. That's just me. But I do remember times in elementary school when I would storm over (as intimidating as a 70-pound Grade 6 kid could be) to anyone who might be bothering Christy and give them a piece of my big-sister mind. Christy is beautiful, hilarious, kind, and a lover of all things neon. She is perfect to me, and anyone who saw otherwise was not welcome around her (or so my 12-year-old self thought).

Needless to say, when people suggested that Christy might not be “good enough” as my maid of honour, it didn't sit well with me.

Despite my confidence in my decision and happy hopes, making Christy my right-hand girl caused a lot of conflict in the nine months leading up to my wedding. My mom and I tried hard to remain organized and lightly delegate the support Christy might need, but a lot of people were really unsure about her capabilities and the role that she should have.

It came to a climax on the day I overheard a conversation that wasn't meant for my ears: “All the stress and problems Kayla is having are because she doesn't have a real maid of honour.”

I cried for almost an entire afternoon. What did they mean she wasn't real?! And how was she in any way responsible for my wedding stress? All wedding plans become stressful at one point or another, and if anyone was responsible for the stress it was me. After all, it was my choice to involve her, right?

I learned a lot of valuable lessons that day. I learned that the ability to forgive is a matter of the heart, and that it’s often hardest to forgive a person for hurting someone close to you. I learned that not everyone will understand my sister like I do, and that is something I am going to have to be okay with. I was also reminded of something that I so often forget: my sister is my personal cheerleader.

That day when my heart broke for the hurtful words directed at Christy, she was the one beside me offering comfort. She gave me multiple hugs, put her arm around me, and confidently told me that I was going to be beautiful on my wedding day. Isn't that what all us girls want to hear in our lowest moments? She also assured me (not for the first time, or last) that she was very excited “to have a brother in the family.” I'd say that's exactly what a bride needs to hear from her maid of honour.

Christy knows me better than almost anyone. Despite her struggles in many areas, she is one of the most intuitive and empathetic people I know, and I am crazy-blessed that I get to walk with her through the adventure of life.

I'm extra grateful that she stood by my side through my entire wedding day. She held my flowers, she saved my twin flower girl and ring bearer, aged 3, when they got lost walking down the aisle, she danced her heart out all night long, and she wrote the most beautiful speech. If I had to do it all over again, I would choose her in a heartbeat.

Christy is my lifelong biggest fan, and she is the best one I could ever ask for.

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What New York Magazine got wrong about intellectual disability

By Louise Kinross

A fascinating piece came out in New York Magazine earlier this week called How Smart Do You Have To Be To Raise A Child?

It raises excellent questions about the rights of disabled parents, including those with intellectual disabilities, to care for their kids—noting that 37 American states make a disability reason enough to terminate those rights.

However, one statement in the piece never should have made its way past a fact-checker.

In talking about whether intellectually disabled women can raise their children, the author writes: “one of the signs of intellectual disability is a limited capacity for empathy.”

WHOA Nellie!

Halt!

Where on earth did that come from?

As someone who has a child with an intellectual disability, works at a hospital for children with disabilities and has been writing (and reading) in the field of parenting and disability for years, this struck me as false. Outrageously simplistic. And dangerous.

Lack of empathy is not a marker for intellectual disability.

But just to be sure I wasn’t confused myself, I reached out to a number of experts.

First I e-mailed Dick J. Sobsey, associate director of the JP Das Centre on Developmental and Learning Disabilities at the University of Alberta.

“A lack of empathy is NOT a general characteristic of intellectual disability and certainly not for someone with a mild intellectual disability,” Dick wrote. “Mothers’ ability to attach to their child and respond to their needs is affected by their own experience as children.

“Sadly, children with intellectual disabilities are much more likely to have grown up in institutional care or to have been abused and neglected. Institutional care, abuse and neglect are risk factors for difficulties with empathy—in women with and without intellectual disabilities.

“There is no reason to believe that an individual cannot be a satisfactory parent simply because of an intellectual disability.”

I then e-mailed Dr. Brian Skotko, co-director of the Down syndrome program at Massachusetts General Hospital for Children in Boston. “People with intellectual disabilities do have the capacity, to varying degrees, to be empathetic,” he wrote. “To assume otherwise would be presumptive. If someone has a lack of empathy, it doesn’t necessarily mean that they have an intellectual disability. And if someone has an intellectual disability, it does not necessarily mean that they have a lack of empathy!” (that's his exclamation point)

Finally, I messaged Dan Habib, filmmaker in residence at the University of New Hampshire’s Institute on Disability. Dan is a member of the President’s Committee for People with Intellectual Disabilities.

“I agree with your critique,” he responded. “This is one of the more widely accepted definitions of intellectual disability. Nothing here implies lack of empathy.”

Dan is currently producing a documentary, out in 2017, called Intelligent Lives, about how the segregation of people with intellectual disabilities became the norm, and why it's slowly being dismantled. 

So please, New York Magazine, when writing about one of the most marginalized populations on the planet—please get your facts straight.

Photo above from New York Magazine. 

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NHS failed to probe unexpected deaths in disabled patients

By Louise Kinross

Earlier this year I hung up the phone with Sara Ryan, mom to Connor Sparrowhawk (above right) an 18-year-old with autism and an intellectual disability who drowned after having a seizure in a bath in a National Health Services mental health unit in Oxfordshire, England in 2013.

I felt sick.

Despite telling hospital staff that her son had epilepsy and was having seizures as a patient, he was left unsupervised in the bath. Two weeks later, Southern Health Trust wrote in board minutes that a “service user” had died of natural causes.

Sara, a senior researcher and autism specialist at Oxford University, demanded an independent investigation which found the death was preventable and neglect was a contributing factor.

Last week, British Health Secretary Jeremy Hunt said the government was “profoundly shocked” by a report that found less than 1 per cent of 337 unexpected deaths of people with intellectual disability between April 2011 and March 2015 were investigated by Southern Health Trust. The average age at death was 56, seven years younger than the national average. Half of the deaths occurred in acute-care settings.

This was part of a larger report looking at 1,454 unexpected deaths of patients with mental health problems or intellectual disability. It was only undertaken due to immense advocacy by Sara Ryan and her family and friends (including a sophisticated social media campaign called @JusticeforLB. Connor's nickname was "laughing boy").

Today the report was formally released.

In 238 deaths of people with intellectual disability, the most common reasons for premature death were: “delays or problems with diagnosis or treatment and problems identifying needs and providing appropriate care in response to changing needs.”

The authors say the nature of the unexpected deaths of people with intellectual disability echoed cases identified in a 2007 Mencap report called Death By Indifference.

“It was disappointing to see the Death by Indifference findings reflected in the cohort of death reports we reviewed,” the authors say. They note that the issues they identified mirrored the “institutional discrimination” against people with intellectual disabilities and their families found in the Mencap report.

“…the real, underlying cause of many deaths of people with a learning disability ‘is the widespread ignorance and indifference throughout our healthcare services towards people with a learning disability,’” they quote from the Mencap report. This poor care stems from “ignorance and prejudice.”

Here’s one example in the new report: “A service user was seen by the GP but care home staff took him to [emergency]. He was turned away from [emergency] and sent back to the care home. The service user was admitted shortly after and died of a terminal illness. It was reported by Trust staff that no painkillers were given on the acute ward as the service user did not appear in pain. There was no further investigation or escalation by the Trust which, whilst not directly responsible, did not act on the incident report.”

It’s interesting to note that while less than 1 per cent of unexpected deaths in patients with learning disabilities were investigated, 30 per cent of deaths in mental health patients were.

In looking at all investigations, families were left out of the process 64 per cent of the time.

Key findings included “a lack of leadership, focus and sufficient time spent in the Trust on carefully reporting and investigating unexpected deaths” and an inability to demonstrate how they had learned from the deaths and improved care as a result. The quality of reports was poor and careless. In one case a teenage son was referred to in the same report with three different names.

And in related news about the care of children and adults with intellectual disabilities, consider this:

-A do-not-resuscitate order was placed in the medical file of a British man with Down syndrome, with no consultation with his family, with these reasons listed: “Down syndrome, unable to swallow (tube) fed, bed bound, learning difficulties.” The hospital has apologized for breaching the man’s human rights.

-A 17-year-old with autism dies after being restrained in an unlicensed Oshawa, Ont. group home. From a related Toronto Star story: “It is stunning to me how these children... are rendered invisible while they are alive and invisible in their death,” said Irwin Elman, Ontario’s independent advocate for children and youth. Elman was unaware of Justin’s death until informed by the Star.” In another story, we learn that Elman has just won the right to be promptly informed when children (with or without disabilities) die in the care of the children's aid. It's taken seven years of advocacy.

-a horrifying report on the daily use of physical restraints and two preventable deaths, in an American for-profit residential program operating in four states, for youth with severe developmental disabilities, including autism. “Many complaints have centred around the company’s aggressive use of mechanical restraints, such as leather cuffs, chairs with straps, and a ‘wrap mat’ akin to a full-body straight-jacket. Such tactics, records show, have resulted in broken arms, collarbones and jaws, knocked-out teeth and cuts needing stitches.” Most recently a 14-year-old girl died there after being tied to a bed, and then a chair, while vomiting as much as 30 times all night.

These are all stories that crossed my desk in the last week. They're not anomalies. 

Read our BLOOM interview earlier this year with Sara Ryan.

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