Why are we at 'war' with cancer and disability?

By Louise Kinross

I heard a fascinating interview with science writer Alanna Mitchell on CBC Radio's The Sunday Edition with Michael Enright a few weeks ago.

Alanna recently wrote Malignant Metaphor: Confronting Cancer Myths.

She and Michael note that cancer is seen by society as simultaneously “inevitable, preventable and deserved,”—which of course it can’t be, and which leads us to blame people who have cancer.

This reminded me of our religious, psychological and public-health history of blaming mothers for their children’s disabilities.

In fact, when Alanna shares her reaction to learning her 21-year-old daughter has cancer, it’s eerily similar to the one we hear mothers recount when given the news that their child has a disability.

“I was absolutely convinced that I had somehow done something wrong…I went over every moment of her childhood. What had I done, what had I failed to do...I went back to the day she was conceived, to gestation…It was so much better than it being random.”

Alanna notes that rather than acknowledge the unpredictability of cancer, “the disease has to mean something bigger than it is. It's not just a cell that's gone rogue...We write a narrative about it.”

That typically involves dropping the person, metaphorically, into battle. “…with enough pluck and positivity, you can vanquish the Goliath, and even if you don’t win, you are expected to go down fighting,” Michael notes.

Doesn’t this mirror the common storyline we read in mainstream media about a person “overcoming” their disability?

How does fighting fit in with healing?

Doesn't the war metaphor strike you as simplistic, ridiculous and often harmful to a person living with an illness or disability?

Read More

My dad was disabled, and cooler than most

By Louise Kinross

Earlier this month Bill Peace, a visiting professor at Syracuse University, disability advocate and author of the blog Bad Cripple, posted a moving piece by his son Tom about growing up with a father who uses a wheelchair. Tom, now 23, has a degree in political science and plans to pursue a Master’s degree in prosthetics. Here he is with his dad in earlier days, and below at university graduation. We asked him some questions about his childhood.

BLOOM: What did you think of your dad’s disability as a child?

Tom Peace: When I was a young child, I always thought my dad's disability was cool. I got to ride around in his lap, which no one else could do. It was fun, especially when we went down hills at what my ‘little-kid mind' thought was incredible speed.

Some of my fondest memories as a kid are sitting on the floor of the living room with my dad, fixing or maintaining his wheelchair. There was a cool element to his wheelchair. [Working on it] was something my father and I did together. It was a shared experience that no other kid had. I didn't realize it at the time, but that was very important to me.

In my child's eyes, my dad was not disabled, just different. We went everywhere together. We travelled a lot and cruising down hills was the best. I remember one of my friends in elementary school telling me that he wished his dad was disabled. That really stuck out in my mind. My dad was disabled and he was cooler than the other ‘normal’ parents.

BLOOM: You wrote that growing up you stuck out wherever you went. Can you explain?

Tom Peace: My father and I stuck out, not only because many places were inaccessible, but because of the way people acted towards my father. It was the strange comments and attitudes that made me realize how different my dad was. I distinctly remember church was the first place I recognized this. I remember telling my father I didn't want to go to church anymore, and when he asked why, I told him it was because people were mean to him.

Old people would constantly harass my father and tell him that if he prayed enough, God would let him walk again. I was too little to get that this was because people could not imagine life as a paraplegic. I thought they were weird. Why would my dad want to walk again? Then we couldn't go on cool wheelchair rides and stuff.

Even today, people feel they have the right to say horrible things to my father. For example, strangers will come up to him and say “If I were like you, I'd kill myself.” Can you imagine saying that to another human being who is just out buying groceries or whatever?

Another common one is “It’s so nice to see you out.” Where is my father supposed to be? From my childhood to my teens to today, people have always come up to my father and expressed extremely negative views about disability.

Another thing that happens to this day is that people assume that I’m not my father's son. Health-care workers were the worst. Once in the ER my father was asked if he could prove I was his child.

Most often people assume I'm his caretaker. Even when I was as young as 10 people would bend down and address me, not my father. This still happens. When shopping together, a cashier will hand me the change or return his credit card to me. My father is clearly the older adult and the one who handed them the money in the first place.

People assume that just because my father cannot walk he also cannot think. He has a PhD from Columbia! As a child I was confused. As an adult I am angry.

Inaccessibility was a huge problem, as were obscure entrances. We could never go through the front door. It seemed like we always went to a rear entrance or had to use a hidden elevator. The elevators were often locked or broken (if locked, no one knew where the key was).

I still remember using the maintenance hallway of a fancy hotel in Seattle where we passed Mick Jagger. I thought seeing the back way in was cool as a kid. But now I realize that it was blatant discrimination and a major Americans with Disabilities Act violation.

BLOOM: Was inaccessibility the main challenge?

Tom Peace: Yes and no. Accessibility was certainly a challenge, but with enough time and effort, that was surmountable. Ignorant people proved to be the biggest challenge.

My secondary school administrators were outright hostile to any suggestion of equal access. Employees of all sorts of businesses clearly did not care about, or want to deal with, my father. Most access issues could be solved given a little effort and ingenuity. The primary issue was no one valued wheelchair access.

People who were supposed to be helpful were unwilling to help. The big challenge growing up was that no one gave a shit. 'Oh, the buses aren't accessible? Too bad for you!' It was not just that buildings and vehicles weren’t accessible. There was not the slightest effort to follow the law. Those blue wheelchair logos were a joke. I called them ‘the blue sign to nowhere.’

BLOOM: Tell us about some of the things you couldn’t do because your dad couldn’t enter a building.

Tom Peace: My dad and I could do anything we wanted. If a building wasn’t accessible, we did something else. I remember being in Boston. We went on the revolutionary war ship Old Ironsides. The lower decks weren't accessible. So my dad talked a commissioned sailor stationed on the ship into showing me cool stuff below deck that no one else got to see.

BLOOM: How did it make you feel as a child when you got to an event and realized there was going to be a problem getting in?

Tom Peace: In a word: excluded. I felt like there was something wrong about us that justified our exclusion. Very quickly I realized that there was nothing wrong with me or my dad. Like my dad, I got angry that the legally required accommodations were not made. It made me realize that companies and institutions like schools are not there for you, they are there for themselves. We did not fit into a standard mould, and were knowingly excluded.

BLOOM: I remember hearing your dad interviewed about a time when he was going with you on a school trip but there was no way for him to get on the bus, so he had to crawl on. What is your memory of that?

Tom Peace: That is a hazy memory. All I recall was I wanted to see the new Air and Space Museum. I also remember my dad bought me the coolest WWII bomber jacket.

BLOOM: You write about antagonism between your dad and your school principals: 'They did not like us and we did not like them.'  

Tom Peace: They absolutely made things difficult for us. They always locked the only accessible door in the evening. My dad was a Cub Scout leader. They knew my father and I attended Cub Scout meetings. Even knowing this, the doors were locked at the school.

The school flat out refused to consider getting or renting accessible buses. My school pretty much did everything possible not to comply with the ADA. We did not like them because they adamantly refused to place any importance on basic access.

They thought that making any reasonable accommodation was a choice they got to make. When my father asserted that the law required equal access he was called “entitled and bitter.” Worse he was “an expensive burden on the system” and wanted “special treatment.” Asking for equal access and to participate in my education is in no way special treatment.

BLOOM: You wrote about how when you graduated from university your dad couldn’t see you because the disability seating was at the back.

Tom Peace: Disabled seating was not at the back—it was non-existent. The place my father watched from was the only random place he could get to. All the floor seating was reserved in advance, with costly tickets. None of it was reserved for people like my father who actually needed to sit on the ground level. There were no clear lines of vision from where he sat to where I crossed the stage, so he couldn’t see me. This really put a damper on the day. My father wrote an extensive post about this incident.

BLOOM: How has growing up with your dad, including his disability and access issues, shaped you as a person?

Tom Peace: Growing up with a disabled father has made me the type of person that questions everything. I always ask: ‘Why are things this way?’ I am deeply mistrustful of institutions and authority figures. I don’t mindlessly accept the status quo.

Growing up I saw how power could be abused and certain segments of the population discriminated against. My dad was regularly screwed for the convenience of everyone else. I have always wanted to help those whose civil rights are ignored. Because of my dad I know the social support systems that exist are inadequate. Over 70 per cent of disabled people live below the poverty line and the vast majority are unemployed. This made me see, at an early age, the effects of wealth disparity.

Questioning the status quo as I do shaped my political beliefs and aspirations. I look at life as a series of challenges. I know that nothing is impossible with a little effort, ingenuity and creativity.

Read More

BLOOM media roundup

Looking for a read or video that will make you think? Check out these disability, health and parenting stories we've collected recently. If we missed a good one, please post the link in the comments.

Parents of a disabled child have to save for three The Globe and Mail
According to a University of Calgary study, 24-7 support for an adult with autism or other disability costs over $158,000 a year, and has been underestimated.

'What we have to do is find the places of hope' The Globe and Mail
Jean Vanier, founder of L'Arche communities for adults with intellectual disabilities: 'The more we lose, the more we come to the reality of what it is to be human.' 

Teen's death raises questions about secrecy surrounding kids in care The Toronto Star
A teen with autism wanted to go for a bike ride. The group home said they were going fishing. The teen acted out, was restrained and later died. Ontario's provincial advocate for children and youth only heard about the death when a reporter called him. "'It's 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."  

Unrestrained Pro Publica
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. “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 after being tied to a bed, and then a chair, while vomiting as much as 30 times all night.

Why do you never see a Lego mini-figure with a disability? The Guardian
"There is irony in the fact that toy shops are legally bound to consider the access of their disabled customers, while the products inside, created by huge companies that profit from the entertainment and education of our children, have no legal duty to consider how they represent disabled children and can therefore continue to culturally marginalize them."

The meddling masters of our high-cost health care The Globe and Mail
André Picard: "All told, Ottawa, the provinces and territories spend about $6.5 billion a year on the administration of the [Canadian] health system, and that is just the cost of running ministries of health and regional health authorities, not the administration within hospitals and other programs."

When hospital paperwork crowds out hospital care The New York Times 
Increasingly nurses are evaluated on how well they track a patient electronically, as opposed to the actual care they are providing.

Video: The teenager left paralyzed by one tiny mistake The Guardian
After a routine surgery, nurses gave this British teen fluids through an unclean tube that had been used for anesthetic. The extra anesthesia caused a cardiac arrest. 

NHS trust 'failed to investigate hundreds of deaths' BBC
Less than 1 per cent of 337 unexpected deaths of patients with intellectual disabilities were investigated over a four-year period by Southern Health Trust in Britain.

Death and sandwiches The New York Times
Noting how often medicine forces doctors to think when they want to cry, a resident physician says: "Dampening our emotion response, then, can help free our analytical minds to more effectively act, advise, cut, diagnose and treat, often under conditions of great uncertainty."  

The missing generation Spectrum
Left to languish in psychiatric institutions or drugged for disorders they never had, many older adults with autism were neglected or forgotten for decades. Efforts to help them are finally underway. 

I'm not broken The Washington Post
What this Washington reporter with autism wants you to understand.

Audio: What happened to your face? CBC Radio The Doc Project
Tanya Workman has a facial difference, something we would once label as a deformity or disfigurement. So does David Roche. But while language has evolved, have cultural attitudes and understanding? This doc is about perceptions of difference and the stories we tell about those differences.

Yearbook puts special needs students in 'short bus' on last pages WPXI-TV
Child's grandmother looks for his picture in his yearbook but it's not on the page with his classmates. Instead, it's been photoshopped into a yellow bus with other special-needs students in the back.

The disability experience Bad Cripple
Syracuse University professor Bill Peace: "Why is the social life of 'crippled' people so different from those who ambulate on two feet?"

Video: The enchanting music of sign language Ted Talks
Music can be seen and felt says deaf artist.

Lonely people's white blood cells less suited to fighting infection, study says The Independent
This study could help explain why people suffering from social isolation are 14 per cent more likely to die early compared to people who are not lonely. 

Read More

Christmas cards flood in for hospitalized girl

Here’s a heartwarming story about Holland Bloorview inpatient Evelynn Nichols, 9, from Kathy Gravel, social worker on our brain injury unit. Evelynn, wearing her bravery beads, is pictured above with dad Stephen.

Nadine Pigeon is telling me that her daughter Evelynn is receiving Christmas cards from all over the world as we speak.

A volunteer parent in her Chatham hometown’s school lunch program heard about Evelynn’s severe stroke in September, and invited folks through Facebook & imgur to send Evelynn Christmas cards to boost her spirits over the holidays.

  

She’s now receiving 150 cards a day, bins' worth over these weeks, from as far away as Norway, Finland, Russia, Australia, England, China, all over the United States, and almost every province in Canada! Whole school classes are sending cards!

Sometimes people send funny things along too: One person said ‘I’m going to knock your socks off’ and sent socks! Evelynn can laugh and gosh, she thought this was so funny! The whole idea was to brighten and boost her spirits and her mom says this is sure working, as well as spreading the joy of the season all over the world.

Read More

Making a tree is as fun as buying one, and more kid-friendly

Susan Cosgrove's two-year-old son has autism and isn't ready for a real Christmas tree this year. 

"It was a safety issue as far as him pulling it over or climbing on it, as well as the choking hazard of him reaching the lights and small, breakable ornaments," she writes. "It was also a sensory and impulse-control thing as far as touching and removing the ornaments. He's already pulled half the stickers off of this one but I bought about 1,000 stickers, so it's fun to keep putting new ones on."

Susan says an occupational therapist suggested they make their own tree. "It also saves my sanity because I'm not having to monitor him every second with a real tree."

Thanks for sharing this awesome idea Susan!

Read More

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.

Read More

Putting autism risks in context

By Louise Kinross

Sigh.

It’s too bad this illustration that ran with a piece in the New York Times' Motherlode column about antidepressant use during pregnancy and risk of autism didn’t have a bubble beside it that read: “My baby has almost a 99 per cent chance of not having autism.”

Because that’s what the Canadian study found.

But the way most news stories are reporting it, you might come away only with this stat in your head: antidepressant use in pregnancy is associated with an 87 per cent increased risk of autism in children.

It is. But the baseline rate of autism is about 1.1 per cent. And the rate of autism in the children of moms taking antidepressants was still less than 2 per cent.

According to the March of Dimes, a woman has a 3 per cent chance of having a child with a birth defect. This means that the risk of having a child with any birth defect when the mom doesn't use antidepressants is higher than the increased risk for autism suggested by antidepressant use in this study. 

Only CBC seemed to get it right with this lead: "Taking antidepressants during pregnancy may slightly increase the risk of having a child with autism, but the chances of having a baby without the disorder are still about 98.8 per cent, new Canadian research suggests."

The CBC piece, which includes comment from Holland Bloorview neurologist and autism researcher Evdokia Anagnostou, explains why the study’s findings are more complicated than they initially appear.

You may find this piece we did earlier this year helpful: Making sense of autism risks.

Illustration by Allison Steen, reprint from the New York Times.

Read More