Tuesday, January 15, 2019

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. 

Thursday, January 10, 2019

Adults with cerebral palsy at higher risk for depression, anxiety

Mathias Castaldo is a member of Holland Bloorview's youth advisory and participated in our Dear Everybody campaign to end disability stigma. “The minute we tell someone they cannot do something because they are disabled, we disempower them. We take away their desire to have dreams and to achieve those dreams, and we ultimately take away that person’s spirit.”

By Louise Kinross

Adults with cerebral palsy (CP) have higher rates of depression and anxiety compared to the general population, according to a British population-based study in a primary-care setting.

The study, published in JAMA Neurology on Dec. 28, compared diagnoses of depression and anxiety in 1,705 adults with CP with 5,115 adults without CP who were of the same age and sex and from the same primary-care practice. Adults with CP had a 28 per cent increased risk of being diagnosed with depression and a 40 per cent greater risk of being diagnosed with anxiety. Participants were aged 18 to 89 and received a diagnosis between 1987 and 2015.

BLOOM interviewed two of the authors by e-mail: Kimberley Smith, a lecturer in health psychology at the University of Surrey and Jennifer Ryan, a research lecturer at the Royal College of Surgeons in Ireland.

BLOOM: Why was there a need for this study?

Kimberley Smith: There isn't much research that's been done looking at mental health in adults with CP. Most of the research is in children. Being an adult with CP is different than being a child with cerebral palsy, so we can't apply results from children to adults.

Jennifer Ryan: Our anecdotal experience suggested mental health conditions are prevalent among adolescents and adults with CP. From speaking with young people and adults, we were also aware that often mental health problems are more challenging and have a greater impact on their wellbeing than their physical impairment.

BLOOM: Were you surprised by the findings?

Kimberley Smith: Not really, to be honest. People who live with any long-term conditions have around double the risk of depression and anxiety than people who don't have a long-term condition.

Jennifer Ryan: We also suspected this was the case from speaking to people with CP and the health professionals who work with them.

BLOOM: In a piece Kimberley wrote for The Conversation online, you discuss some of the reasons adults with cerebral palsy may be at higher risk. These include physical causes, such as pain and fatigue, as well as social isolation, stigma, unemployment and lack of accessibility. Why is there so little research on mental health in this population?

Kimberley Smith: Research into aging with CP is still developing, and we've lacked research on the development of both mental and physical illness. We think it's because historically CP was considered a childhood condition, and people didn't really consider that most people with CP have normal life expectancy. Due to this, researchers tended to focus on childhood only. The problem with this is that we lack the evidence required to support the need for specialized care for adults with CP.

Jennifer Ryan: Perhaps the reason there's a lack of research on adults is because services for people with CP are typically organized on a pediatric model. We've found that it's very difficult to conduct research involving adults with CP because there's rarely one service where we can access them.

BLOOM: Research here at Holland Bloorview almost 20 years ago showed the increased risk of secondary conditions that result from poor care when youth transition to the adult health system. It's referred to by families as 'falling off the cliff.' We're very aware, for example, of adults with CP who desperately need physiotherapy, but are unable to get funded therapy, so go without. And adults who are unable to find specialists who understand their condition. I'm assuming the situation is similar in the U.K.?

Kimberley Smith: It's a bit different as we have funded healthcare through the NHS, but we also have the same issues around transitions from youth to adult-care services. A researcher called Professor Allan Colver in the U.K. has done research into how we could improve this. However, we're still a long way from having specialized adult CP services.

In order to advocate for this, two women set up a charity called the Adult CP Hub in the U.K. We as a research team are also in the process of publishing a series of papers on the risk of different illnesses in adults with CP, which we hope will create some of the evidence required to support the need for these services.

Jennifer Ryan: We've also heard families in the U.K. and Ireland use the term 'falling off the cliff.' Even when pediatric services try to prepare them for the transfer to adult services, people are usually still shocked when they realize how few services there are and how difficult they are to access. In particular, it's difficult to access professionals working in adult services who have knowledge of CP.

In the U.K. and Ireland, the difference in pediatric and adult clinician roles is a real challenge for people with CP. While pediatricians typically coordinate the care of young people with CP, there's a severe lack of adult rehabilitation physicians. There are also differences in the eligibility criteria for children's and adult services, which results in adults often not being eligible for services they received in childhood.

BLOOM: Is anyone studying what interventions for depression and anxiety are most effective for adults with CP? When I posted a link to your article on our Facebook page, one reader said that antidepressants increased her spasticity. So I wondered if there were studies examining what treatments work best?

Kimberley Smith: The only researcher I'm aware of who might be looking into this is Dr. Daniel Linhares, based at Columbia University in New York. This is a link where he talks about the use of antidepressants in adults with CP.

BLOOM: I just found this story about a new centre for adults with CP at Columbia!

Your study found an increased risk in depression and anxiety for adults with CP and no intellectual disability. It didn't find the same increase in adults with intellectual disability. This seems odd, in that adults with intellectual disability would have the same physical problems, such as pain and fatigue, and face the same stigma. Is it possible that depression and anxiety in adults with CP and intellectual disability is missed by clinicians?

Kimberley Smith: Based on our work, we can't say for sure. One reason could be due to 'diagnostic overshadowing:' this is a term used to describe when distress presents as challenging behaviours, rather than as the symptoms we have been taught to link with depression and anxiety. This could mean that depression and anxiety are missed.

However, there is also work that's been conducted in populations of people with intellectual disability that indicates that the prevalence of anxiety and depression in these individuals is no different from the general population. In short, we don't really know, but it's really important that as researchers we try and find out.

BLOOM: You mentioned this study is part of a series on aging in CP. 

Kimberley Smith: We have one study written by Jennifer on the increased risk of death from non-communicable diseases in adults with CP. It was recently accepted for publication in Developmental Medicine and Child Neurology. There are also two other papers looking at the risk of developing non-communicable diseases and arthropathies in adults with cerebral palsy. Both have been submitted for publication and we're keeping our fingers crossed!

Tuesday, January 8, 2019

Why a new face-scanning genetics app worries me

Photo in Nature, by Michael Ares/The Palm Beach Post via ZUMA. This girl has Cornelia de Lange syndrome, a condition with distinct facial features that an app called Face2Gene was taught to identify and distinguish from other rare disorders.

By Louise Kinross

Yesterday, Nature reported on a paper in Nature Medicine about a smartphone app called Face2Gene that helps clinicians diagnose rare genetic conditions by analyzing photos of faces.

According to Nature, "it relies on machine-learning algorithms and brain-like neural networks to classify distinctive facial features in photos of people with congenital and neurodevelopmental disorders." 

Not surprisingly, it's better at matching a face to a syndrome than clinical geneticists are.

"We failed miserably, and Face2Gene killed it," a geneticist is quoted saying. In fact, Nature used the header 'Killing it' above that section.

"Killing it" isn't quite the way to describe how it feels to be given a diagnosis of a rare genetic disorder in your newborn. For parents, it's not a game, or a sport, that you win.

If Face2Gene means families of children with the same rare syndrome will be better connected to share information and support, that would be invaluable. But I don't imagine the database serves that function.

I don't believe Face2Gene will necessarily lead to better treatments or therapies for rare disorders, and I wonder whether it will further stigmatize people with unusual faces.

To parents, there is something precious and sacred about a newborn's face. Gazing into our child's eyes is the first way parents connect with that new life.

When your child has unusual features, suddenly the face, instead of being a conduit to loving our child, becomes the focus of a great deal of negative attention from clinicians. All types of measurements of our baby's face and head may be taken and recorded, and we may be given a list of things that are "wrong."  

When my son was four days old, a geneticist asked us to have the hospital photographer take photos of his face and profile, as well as his feet, which apparently were extra wrinkly. She said it would be useful to have photos on file to help doctors identify other kids like my son. As a new parent, it felt intrusive and stigmatizing.

Face2Gene has about 150,000 images in its database. Nature noted that these are mostly white faces, and the app only recognized Down syndrome in 37 per cent of black Congolese children. They plan to address this ethnic bias by appealing to doctors for photos of more diverse children and adults. As more photos are fed into the system, it will become more accurate. It sounds benign, but are there any negative implications?

In 2012 we reported on a French study in PLoS One that found photos of children with Down syndrome elicit less positive attitudes than photos of non-disabled children, particularly if the facial features are "strongly typical" of Down syndrome. Photos of children with Down syndrome were automatically associated with a negative trait, in implicit association tests, even in people who had openly rated them positively. "These implicit associations are the result of social values...carried by our culture, said lead investigator Claire Eneau Drapeau. "They are likely deeply embedded, and difficult to break."

How will Face2Gene influence public attitudes about children with facial differences linked to genetic conditions? I don't know the answer to that, but I think it's worth asking.

I remember going to the University of Toronto's medical library, and finding photos of children and adults with my son's condition. They were often naked, looked afraid, and had their eyes blacked out. 

What will Face2Gene, and the clinicians who use it, do to promote the humanity and beauty of people with craniofacial syndromes?

A rare diagnosis is just the beginning of a long journey for a family. It's not a precise destination or answer or solution, in the way that the geneticist's words "killing it" imply. A wise pediatrician told me early on, before we knew my son's condition: "It probably won't change the therapies and treatments he receives."

At the time, I was naive. I thought that isolating the gene changes in my son's condition would lead to gene therapy or specific treatments. I even started an international association, with another mother, for families affected with the condition and we worked with researchers. At one point, cancer researchers were interested because one of the genes is a tumour suppressor. 

I'm much more cynical and realistic now.

It sounds like Face2Gene is exciting for clinicians. I'm sure it gives them a sense of mastery in pinning down a diagnosis. I'm more interested in what happens nextto that child and family, and to how we, as a culture, view and treat people with genetically-based facial differences.