Wednesday, October 31, 2012

Football players protect student from bullying

Monday, October 29, 2012

Answering your question on withdrawal of fluids in newborn

On Friday a parent posted this question on the BLOOM blog:

"Is it routine to withdraw fluids and nutrition from infants in the NICU? That is what we were offered for our son in hospital after we removed the ventilator and put a DNR on his chart and waited for him to die. He didn't die. He didn't need a g-tube, he was able to breastfeed and get enough nutrition for himself yet it was offered to us to just stop feeding him orally, give him morphine for the pain and let him go. Is this sort of thing common?"

I contacted Dr. Jonathan Hellmann, who is clinical director of the neonatology unit at the Hospital for Sick Children in Toronto for clarity on how to answer this question.

Dr. Hellmann authored a paper earlier this year about parent perspectives on withdrawing intravenous fluids in newborns with severe neurological injury or disease where the decision to stop life-sustaining medical treatment such as ventilation is made (Withdrawal of artificial nutrition and hydration in the Neonatal Intensive Care Unit: parental perspectives). None of the newborns in the study could safely be fed orally.

According to the study, in addition to requiring the full support of the parents and the senior medical staff and team, the practice of withdrawing artificial nutrition and hydration requires "the clear demonstration of the inability of an infant to safely tolerate oral feeds (oral feeding was regarded as routine care even in those in whom it took many hours to achieve a satisfactory intake.)"

Given this criteria, I asked Dr. Hellmann whether withholding milk from a baby who is able to breastfeed -- as reported above by the parent on BLOOM -- fell outside the practice of withdrawal of artificial fluids and nutrition.

Dr. Jonathan Hellmann: Your interpretation is correct. Only if the feeding is regarded as medical treatment i.e. requiring tubes, IVs, lines etc. is it ever our practice to possibly raise the issue with parents of a profoundly affected infant. If the child is able to tolerate feeding it is absolutely not acceptable to consider withdrawal of hydration and nutrition. I am extremely concerned that individuals might interpret our findings without every effort being made to feed even small sips, and only when it is unsafe to potentially raise the issue. It is certainly not common practice here and requires very careful consideration in every case.

I hope the parent who posed the question above sees this blog and lets us know if she has more questions.

Sunday, October 28, 2012

Heading out to Change for Kids

Thursday, October 25, 2012

A toileting taboo: Kids and incontinence















Pee and poop. We all do it. But what if you couldn’t control when you ‘went?’

What if catheters, timed toilet trips, medication, diapers and sometimes surgery couldn’t guarantee that you wouldn’t have an accident?

How would you keep it a secret?

How would other kids treat you if they found out?

Urinary incontinence and how it impacts children socially was the focus of a qualitative Holland Bloorview study of 11 youth with spina bifida aged six to 18 and their parents.

“No one can tease the kid in the wheelchair, but it’s not ‘normal’ to be in a diaper when you’re eight-years-old,” said lead researcher Amy McPherson, recounting what children told researchers in interviews about how other students responded to their incontinence.

Researchers found that about half of the children were bullied – with a couple being completely ostracized – and most had no close friends. “One parent said she hadn’t organized a birthday party for her child because she didn’t think anyone would come.”

Two children who had learned to self-catheterize at an early age did have good friends and participated in typical childhood activities like sleepovers and camp.

But telling their friends about it was nerve-wracking, Amy said.

“Even the kids who functioned well said, ‘Well, I decided to tell my friends before they found out and ran away screaming.’ And even those kids didn’t share ‘the whole story.' They just told their friends they do things a little differently.”

Toileting in our culture is one of the last taboos, and for students, having an accident or a partially-visible diaper was “social death,” Amy said.

One of the themes that came out in interviews was that incontinence marked youth who wanted to be viewed as normal, and was a barrier to being accepted, having friends and going out.

“Because of the stigma, and the fear that others may find out, these students don’t often put themselves out there and instigate friendships,” Amy said. “It’s not something you want to talk about. You have to keep it hidden.”

“These kids feel stress to keep up a fa├žade,” said researcher and ambulatory care nurse Julia Lyons. “Their goal is to fly under the radar, ‘for no one to notice me.’”

Ironically, parents who were interviewed separately from their children often began by insisting that their child was a normal and regular kid. "Then as the interview went on, it became obvious that their child didn't have friends and wasn't participating in activities, sleepovers, sports," Amy said.

Another theme was independence. “A lot of parents wanted their kids to take ownership of the incontinence issues and felt they needed to learn to do it themselves,” Amy said. “There were still 16- and 17-year-olds who weren’t catheterizing themselves. They used a diaper and had mom do their personal care.”

However, parents sometimes minimized just how hit and miss managing incontinence was for the youth.

“There isn’t a magic bullet for this,” Julia said. “It’s not like if you break your arm they give you a cast. These kids have to do a combination of catheterization and taking medications to allow them to hold more urine and using diapers and pads and even then it’s not 100 per cent effective.”

Drinking a can of pop, participating in gym class or simply being nervous can erase children’s vigilant efforts to stay dry. “The system is so tenuous they’re walking on egg shells on the best of days,” Julia said.

However, parents tended to expect perfection.

“One parent said: ‘She fell off the wagon’ – about an eight year old!”

The researchers noted that some students who did self-catheterize still wore a diaper as a security measure and were reluctant to let it go. They live with the fear that "tomorrow their routine won’t work," Julia said.

School accommodations – such as having students use the staff washroom where they can store their supplies – often reinforced the perception that they were different.

Typically children’s incontinence wasn’t shared with the class, but the student would have a signal to let the teacher know they needed to go to the bathroom, and would be taking longer than expected.

Unfortunately, some of these signals were stigmatizing: “In one case, the Grade 5 student had to place a giant, city-issued traffic cone on her desk to say she’d be back in 10 minutes,” Julia said.

Families reported a lack of incontinence products that were discrete and effective.

The researchers note that negative stereotypes about “having a leaky body” don’t just exist in childhood. “Adults who are incontinent are less likely to have meaningful employment and romantic relationships, so there are long-term implications for children with incontinence,” Amy said.

A larger study is needed to better identify what promotes continence and social acceptance in children with spina bifida. One tool to support children may be an online group where children who are going through the same thing can share their experiences.

This small study was launched because clinicians heard frequently that children with spina bifida and incontinence were bullied.

Dr. Paige Church and Nicole Fischer were the other researchers on the team. Their findings will be presented in a poster at the Bloorview Research Institute Symposium Nov. 13 and submitted to the journal Disability and Rehabilitation.

Chat with us at Parent Voices










Come visit us at Parent Voices at Holland Bloorview on Facebook!

This is a place for parents of children with disabilities to ask questions, share practical information, discuss topics and support each other.

Where useful, we’ll offer expert advice on how to navigate the system and what programs and services are available at Holland Bloorview and beyond. We’ll also let you know about parenting resources.

Read our About section to learn more.

Please hop on over and "like" us and give us some help around medical jargon we need to simplify! Louise

(When commenting @Parent Voices, please use only your child’s first name and don’t share detailed information about your child or a health-care provider. We will remove negative comments about people or organizations)

Special Olympian fires back at Coulter

Watch this interview with John Franklin Stevens (left), a Special Olympian who has Down syndrome. Then read his Open letter to Ann Coulter.

Wednesday, October 24, 2012

Don't show your ignorance Ann









My British dad used to use that phrase: "Don't show your ignorance."

And in the context of Ann Coulter (who tweeted the above Monday during the final debate in the U.S. presidential election) it fits like a glove.

I'm so glad I don't live in a country where ignorance and hatred are accepted as "free speech."

The media describe Ann as a Conservative pundit.

However, a pundit -- "a learned person" who "makes comments or judgments in an authoritative manner" hardly describes someone whose best criticism of the United States President is to call him "the retard."

There isn't anything learned or authoritative about tweeting a schoolyard taunt that has been used to dehumanize people like my son for decades -- a word that isn't even used in medical circles anymore.

I took a quick look at Ann's website, and it spews hatred for marginalized groups, so I guess it's not surprising that she'd add a slur against people with intellectual disabilities to her arsenal.

What does surprise me is that Mitt Romney, the Republican contender for the U.S. presidency, would not publicly call her on it.

With friends like Ann Coulter in your camp -- who needs enemies?

There were a couple of news outlets that did report on just how offensive, infantile and "unfunny" she is.

Ann Coulter's 'retard' tweet says more about her than her politics (Leave it to Canada's national newspaper to bring some sense to the topic).

CNN has this excellent piece: Ann Coulter's backward use of the r-word

My friend Ellen Seidman, at Love That Max, who has already done so much to call for respect for our children was forced to devote a blog post to Ann's antics.

At this poll in the British Guardian newspaper, 84 per cent say the comment is offensive. And in response to "Is Ann Coulter's comment appropriate?" in this Toronto Sun poll 68 per cent said "no way."

So yes, I do call on Mitt Romney to weigh in on Ann Coulter's use of the word "retard" to describe President Obama.

Mr. Romney: Is this the kind of language and theatrics you encourage in your own five children?

Monday, October 22, 2012

Sunday, October 21, 2012

Halloween party!






















































Hope to see you at the Halloween Party at the Ontario Science Centre Saturday, Oct. 27 from 6 p.m. to midnight to raise money for Change for Kids at Holland Bloorview.

Saturday, October 20, 2012

Firework


Thursday, October 18, 2012

What message do we need to convey?















At the Certain Proof screening last week, many said we had to be more vocal in telling our children's stories, and in making those stories mean something to the average person.

I later wrote a piece that touched on the negative picture of parenting kids with disabilities that often emerges from research on parent and sibling health, from media stories about families who are desperate for services, and from general attitudes about disability.

I had a most interesting discussion with a friend who suggested that this negative picture may be feeding the stereotype among doctors and the public that life with disability isn't worth living.

With tremendous pressure to contain health costs, she said, we may see an unexpected effect: doctors and government officials making a case for not saving as many children in the NICU, not putting in as many traches, and not giving parents a choice about raising a child or withdrawing care.

At a presentation on care for children with complex medical needs at the National Symposium on Integrated Care last week, it was noted that the most medically complex kids make up less than one per cent of Canada's child population (67 per cent), but eat up 33 per cent of health-care costs.

Last year, at a Canadian conference on the ethics of care for children with disabilities, we heard that about 20 per cent of the pediatric population in the U.S. generates about 80 per cent of its health-care bill.

It's not hard to see why people fear that the drive to cut costs plus research and media stories that paint a gloomy picture for families may make kids with complex disabilities vulnerable.

My friend noted there will be growing pressure on women to terminate when a diagnosis is made prenatally -- to save money and "protect" the family. The bioethicist Margaret Somerville wrote last year about a plan to make Denmark "Down syndrome-free" by 2030 by promoting abortions.

The focus on hardships in research and the media also affects families raising kids with disabilities. When you hear you're at increased risk for depression, anxiety, and, in the case of autism, divorce, and you read some of the literature about siblings, it's hard not to question yourself. Am I falling apart? Are my other children being damaged? Can I handle this? It's kind of a set-up for failure.

But you can't show any vulnerability. You're constantly fighting the stereotypes, trying to prove that really your child is valuable and really you aren't a complete mess as a parent or partner.

Parents of kids with disabilities want research because we’re told that we need evidence to influence policies on supports and funding. The reason all of the academics are in children’s rehab is because they want to make things better for families.

But do we have specific examples locally or elsewhere where services were put in place as a direct result of study findings -- as a way to mitigate stresses?

I can't think of an example in the time I've been raising Ben. Maybe one will come to me.

My friend was suggesting that we need more studies showing the value that disabled children bring to their families and communities.

There are studies, like this recent one in Child, Care and Development called Parent views of the positive contributions of elementary and high school-aged children with autism spectrum disorders and Down syndrome (pages 817–828) by Holland Bloorview researcher Gillian King.

As King writes in the study:

The findings should guard against the inaccurate assumption that there are no positive benefits in raising a child with a chronic disability, or that families experience unrelenting challenges and stresses. Parents may find it useful to know that other parents report many benefits, and the findings may reduce their uncertainty and fear regarding the journey ahead. The information can assist new parents to realize that benefits and enrichments will accompany the hardships, thereby providing a sense of hope. On a societal level, the present findings may encourage community members to view children with disabilities in a balanced light, not simply as a burden.

But do studies like this get any play in the media? I don't think so. Typically the media is looking for conflict or drama or even just simplicity. They don't do complexity and ambiguity so well. And that's what life is like raising kids with disabilities. It's full of beauty and joy and pain and challenge.

So how do you think we should be telling our stories? How can we create a climate where the public supports better services for families of children with disabilities?

Wednesday, October 17, 2012

What you said about Certain Proof






















Listen to a discussion among parents, therapists and teachers following the screening of Certain Proof, a documentary about students with communication problems struggling to be heard in the school system. Jump to our Family Resource Centre and click on the second item: Audio: What you said about the film Certain Proof.

Then come back here if you have comments. Thanks!

Hand out change this Halloween

For our Ontario parents, goblins, witches and other fantastical creatures on Halloween.

Tuesday, October 16, 2012

British advocacy for services close to home

Memories of summer

















Monday, October 15, 2012

Staying sane in a world that hates disability






















I woke up on Saturday and saw this New York Times piece in my alerts: The Psychic Toll Paid in a Special Needs House.

Great, I thought. What negative impacts of having a child with a disability have they discovered now?

The article is about how the psychological strain of deciding where a child who needs support will live, and the stress that special-needs parenting places on a marriage, are more challenging than creating the nuts and bolts of a financial plan for your child's future.

This reminded me of a talk I had last week with a doctor about higher rates of depression, anxiety and divorce among parents of children with autism -- both when compared with the general population and with parents of children with other disabilities. Her advice to parents receiving a diagnosis: "Go and get help now" -- meaning find a therapist.

Meanwhile, in the media we hear about a family in Sarnia, Ontario that's being split because the mother can't care for her adult daughter with disabilities and her dying husband. She brought her daughter to a Community Living respite facility and has placed her in the province's custody.

The respite facility is willing to provide more long-term care if it can access the extra funds needed from the government. But the Ministry of Social and Community Services has said it won't provide the money. Instead, the young woman will be placed in a nursing home -- at greater cost and according to the family in a less appropriate setting -- because that's where the funding exists (apparently there's no flexibility in funding between the social services and health ministries). The article says there are 6,000 families in Ontario waiting for residential care for their loved one.

Today, the British charity Scope released a report that finds that getting services is a "battle" for 62 per cent of 600 UK families of children with disabilities. The headline in The Guardian story refers to families "at breaking point."

A friend sent me a note on a message board from a woman who had just learned she was carrying a baby with Trisomy 13. Her obstetrician was trying to convince her to terminate the pregnancy:

"She told me maybe I will be lucky and he will die at birth so that I would not have to go through long term in caring for a child that will never be able to talk, walk, go to the washroom (always be diapered), eat by himself, will never recognize anyone including me, will also cry a lot at night and scream and yell and will never be able to learn anything. Also gave me the speech about making me suffer a lot and my whole family, especially the other children because I would be giving this baby all the attention and lack giving attention to the other children. That his siblings would end up hating him."

Of course this depiction flies in the face of a recent published study that found that 97 per cent of 322 parents who chose not to terminate a baby with Trisomy 13 later described their child as happy, despite severe disabilities, and enriching their families, even when their lives were short.

We want simple answers when it comes to disability but there are no simple answers. We want everything tied up in a neat package, not the ragged ends.

It is so much harder to raise a child with multiple special needs. We are more susceptible to depression and fear. We're constantly facing up to the fact that our child doesn't "fit" in this culture, that there's a basic hatred toward disability in society. The pressure is on to reshape them, to try to make them "pass" as closer to normal. At the same time, we have to put on our Superman capes because if we show any vulnerability, we get pity: we confirm other people's opinions that our lives are tragic.

It's difficult to explain that despite all of the hardship, you love your child dearly. You wish others could see him in your eyes. You wish there was more support.

Yesterday, as I sat trying to help Ben do his homework, I could hear my voice getting louder and more frustrated (bordering on nasty). It was only two in the afternoon but I poured myself an emergency glass of wine and sent my husband an e-mail titled "Crazy" -- with "that's me" in the body.

Ben's been acting out at school and sometimes I think it's just all too much for him. And I start feeling angry and frustrated at the injustice of it all. And wishing he didn't have this particular lot in life. And wishing that I didn't feel that way. And then I get a pain at the base of my skull.

And I can't help dreaming up his escape -- to a place where he didn't have to live up to society's standards and norms, where he didn't have to constantly find himself wanting. Where everyone's interaction with him didn't involve trying to change him, trying to improve him. Where he could just be.

Sunday, October 14, 2012

Planet of Snail

A South Korean documentary about a man who is deaf-blind and uses finger-tapping to communicate, and his wife, who has a spinal condition.

Friday, October 12, 2012

Little Coppelia

This is a breathtaking video of a little girl called Clara with DiGeorge syndrome and autism who, unbeknownst to her parents, had memorized the dance movements of the mechanical doll who comes to life in the ballet Coppelia. Compare her movements to those of the dancer in the inset. Her therapist filmed her. You can read more about her at the family's website: Clara's Happy Thumbs. Or watch this news story about her: Video of autistic girl's ballet routine goes viral.

Thursday, October 11, 2012

If you don't speak, you don't count, families find













The film Certain Proof is a jarring reminder of how children who can’t speak aren’t “seen” in our culture – are made invisible by people who assume they have nothing to say and a system that doesn’t give them the tools and time to develop a voice.

At the beginning of the American movie – shown at our BLOOM speaker night Tuesday – a doctor says that we have the medical care to save the lives of children with disabilities, but questions: “Do we have the humanity to make those lives meaningful?”

The film follows three students – Colin (above), Josh and Kay – as they struggle to be accepted in public schools. All three have cerebral palsy and significant physical disabilities, but Kay can speak slowly, though not clearly.

Two-and-a-half years after the filmmakers began the documentary, Kay seems to be the only one making progress.

Colin – who painstakingly taps on a voice device with a head pointer – learns that he won’t be getting a high school diploma because he can’t demonstrate what he knows fast enough to keep up with peers.

Josh – who is assessed by a team of literacy specialists who conclude that he can learn – returns to a school where staff misinterpret his signals and exhaust him with repeated requests at rote identification of colours and the alphabet. When he gestures toward a picture to say he’s mad, his assistant redirects his hand to the happy face.

School staff, while well-meaning, underestimate the students, focus on what they can’t do, and don’t appear to have the training to help them develop a solid form of communication or a way of participating in class.

Even though Kay is an A student, her peers admit assuming she was "dumb" because she couldn’t speak. They also laughed at some of her movements.

The hectic pace of a regular classroom doesn’t allow these students the extra time they need to express what they know. One literacy expert notes that because communication is so laborious for these kids, they can’t show their intelligence on standard tests.

Two of the parents in the film express their despair and feelings that they’ve failed – despite going to extraordinary lengths to support their children.

What struck me was the spark of personality in each child – and how over time it was snuffed out because they weren’t understood or heard. Over time these children got frustrated and sad and gave up.

Will Colin, who’s bright and engaging, end up by himself in a nursing home in a corner, as his mother fears?

In the discussion following the Holland Bloorview screening, parents, therapists and teachers called on us to be a louder and coordinated voice for our children – publicly telling our children’s stories. One of the reasons our children are marginalized is that the average person is unaware they exist. Most people don’t know children who don’t speak and have no sense of the challenges facing them in a society and school system that values verbal communication.

There was a call to parents to better tell the story of their child’s life – including their gifts and what we’ve learned as parents about what’s important.

I think we’re often silenced in this way because it’s hard to find the words to convey who our children are without speech. We see clearly our kids’ personalities and interests and strengths. But when the average teacher or student looks at our children, they only see what is different.

It does make me want to write more publicly about our life with Ben.

What about you?

Parents of children who use augmentative communication may be interested in monthly AAC clubs for kids and teens at Holland Bloorview. Call 416 425 6220, ext. 3686. Toronto parents may be interested in a Communication and Writing Aids Open House at Holland Bloorview. It's an opportunity to meet other parents, share experiences and learn about supports. Call ext. 3679 to register for this Nov. 1 evening event.

Monday, October 8, 2012

Empathy, not productivity, defines us, geophysicist says

Xavier Le Pichon is a world-renowned geophysicist who helped create the field of plate tectonics – discovering that the earth’s outer crust is made up of plates of rock that continuously shift all over the globe.

While developing his scientific theories, he lived with his family and raised six children in the original community of L’Arche in Trosly Breuil, which brings together adults with intellectual disabilities and young adult volunteers known as assistants.

In the next BLOOM, I interview Le Pichon about the value of weakness and fragility – whether in the earth’s rock or in people and communities. Here's a sneak peek:

BLOOM: In a recent interview, you said that fragility and empathy are what define us as people. This is different from the philosophers who said cognitive ability makes us human, or from values today that associate worth with money, social status or physical strength.

Xavier Le Pichon: What I discovered is that the major difference between human societies and other societies of living beings is that humans have a capacity for empathy, which leads them to take care [over the long-term] of those who have been affected by major suffering and handicaps.

I was very impressed by studies of skeletons of 100,000-year-old humans which demonstrated that these people took care of heavily handicapped people [for decades]. This is most remarkable as these people were nomad, hunters-gatherers who lived in groups of 20 to 25 people at most.

Since then, [I’ve tried to answer this question]: What motivated these people to permanently change their [way of] life to take care of a crippled man who could neither walk, nor feed himself? It appeared to me that the most revealing aspect of human societies was that they take care of those who – when considered on the sole basis of immediate utility – appear to be “debris” that should be discarded.

Taking care of fragile and vulnerable individuals has revealed to humans [our] own fragility and vulnerability. We have come to see that [a person's] importance in the community is not only and primarily related to productivity, but to the tight network of relationships, of emotions, and more, deeply, of love, that is woven around that person. These affective bonds are created through everyday common life. Think for example of the place that an infant occupies within a family. This place is not related to the baby's productivity or the hope that he will one day be productive. It is related to the love that [grows] out of the relationship with him.

Saturday, October 6, 2012

Language matters
















The International Business Times refers to my beef with The New York Times over routine use of "he is severely retarded" to describe a person. See page three of the story, under the header: Sticks and Stones.

And Ellen at Love That Max also chimes in on the topic: Let's talk about people who cling to the word 'retard.' Louise

Thursday, October 4, 2012

This Halloween, hand out more than a treat!

Denise and daughter Zoe share a cool way for Ontario readers and their kids to raise funds for children with disabilities at Holland Bloorview while winning prizes and celebrating Halloween.

The Change for Kids program features a coin card with 20 coins to hand out to trick-or-treaters. Kids get the chance to win amazing prizes, and for every coin entered at Change for Kids, Scotiabank will donate $5 to Holland Bloorview.

Don't forget to pencil in these accessible Halloween parties (too often kids who use wheelchairs or walkers can't get up stairs in the neighbourhood to collect candy):

Change for Kids Halloween Party at the Ontario Science Centre on the evening of October 27, 2012 and Change for Kids Monster March & Fun Fair at Holland Bloorview on October 28, 2012.

The Halloween spirit has a long tradition at Holland Bloorview. Every year students in our school walk through the hospital to show off their imaginative costumes.

The Asperger's/Autism debate

Listen to a CBC Metro Morning discussion about how parents and doctors feel about the American Psychiatric Association's proposed change to have the diagnosis of Asperger syndrome fall under Autism Spectrum Disorder. On the panel is Dr. Jessica Brian, co-lead of the Autism Research Centre at Holland Bloorview.

Metro Morning: Changing Definition

We interviewed Jessica earlier on the topic here: New autism definition makes sense, clinician-scientist says.


Wednesday, October 3, 2012

'Come out to play'

Beautiful message from Three to Be, a foundation that raises funds for research and therapies to improve the lives of children with neurological disorders. Founded by Jared and Dana Florence. Dana shared her thoughts with us in this interview: 'I've learned not to take anything for granted.'

Letter to the Editor of The New York Times


I was surprised to see a man who was allegedly abused described as "retarded" on the front page of your newspaper and in the first sentence of the related story (Lawmaker to File Suit Charging Abuse of His Disabled Son, Oct. 1, 2012)

(note to readers -- this was later changed in the online version above to "has a severe mental disability.")

I questioned your public editor on this practice, given that your style guide counsels neutral language and "respect for group preferences" when choosing descriptors.

I was told that "retarded" will continue to be used because mental retardation is the medical diagnosis in the American Psychiatric Association's diagnostic manual. 

I explained that the APA has plans to change this name to intellectual development disorder in 2013 because, as it states: "Mental retardation is no longer used internationally or in U.S. federal legislation."

If we can agree that the word "retarded" has taken on the connotation of a demeaning slur, that people with intellectual disabilities made their word preference clear when supporting the Spread The Word to End The Word Campaign, and that the term mental retardation will be wiped from APA's diagnostic manual, why does The New York Times choose to cling to it?

Sincerely, Louise Kinross

One more on language

The rationale I have had from The New York Times is that they commonly use the word "retarded" because mental retardation is still a diagnosis in the American Psychiatric Association's (APA) diagnostic manual (DSM). In fact, I've done a search and realized that describing someone as "severely retarded" is common practice at the newspaper. Here's another recent example:


Thanks to another blogger I learned that the APA has proposed a name change to the current diagnosis. They plan to change the name from mental retardation to intellectual development disorder in the updated DSM in 2013. I have sent this to the the public editor at The New York Times.


If you click on Rationale, it explains that the name is being changed because the term mental retardation is no longer used internationally, or in U.S. federal legislation.

1. Name change. The term mental retardation was used in DSM-IV and in earlier DSM definitions. Mental Retardation is no longer used internationally or in U.S. federal legislation, so a name change is required in DSM-5. The term Intellectual Disability (ID) is widely used. This term is used by the AAIDD and criteria have been developed to define ID as a functional disorder, explicitly in keeping with the WHO International Classification of Functioning (ICF).

Which leads me to question why an authoritative paper like The New York Times would drag its feet?

Tuesday, October 2, 2012

From the public editor of The NY Times














From: nytimes, public [mailto:public@nytimes.com]

Sent: October 2, 2012 12:50

To: Louise Kinross

Subject: Re: To the Public Editor

Thanks for writing. This is something we're continuing to examine. I didn't know the language in yesterday's article was changed, so that is interesting. I appreciate you pointing this out to us as we continue to look into this issue.

Best,

Joseph Burgess
Office of the Public Editor
The New York Times

Note: The public editor's opinions are her own and do not represent those of The New York Times.

From: Louise Kinross
Date: Tuesday, October 2, 2012 10:34 AM
To: Joseph Burgess
Subject: To the Public Editor

Article Headline: Lawmaker To File Suit Charging Abuse of His Disabled Son

Date Published: October 1, 2012

Web or Print: Print issue – Use of the word “retarded” in “sell" on page 1 and in lead on page 18

Your concern:

The NY Times Manual of Style and Usage (in its foreword) recommends reporters use neutral words and those favored by groups such as women, minorities and people with disabilities.

So why, in a story about horrible abuse of a vulnerable, voiceless man in a group home, would your reporter and editors choose to describe him in first reference on page 1 and in the lead on page 18 as “retarded?”

How is that neutral or respectful?

I note in the online version of the story (http://www.nytimes.com/2012/10/01/nyregion/assemblyman-to-file-suit-charging-abuse-of-his-disabled-son.html?_r=1) that the phrase “is severely retarded” has been changed to “has a severe mental disability.”

Why isn’t the reader advised as to the rationale for the word change?

I see that this reporter has exposed horrible physical, sexual and psychological abuse within the care system for people with developmental disabilities in a series of articles last year called Abused and Used. Isn’t it ironic that he finds it necessary to use a demeaning slur as his first descriptor for Ricky in this new story?

Use of 'retarded' in The NY Times














Hi -- I was grateful to have a response from Danny Hakim, the reporter who wrote Lawmaker To File Suit Charging Abuse of His Disabled Son in The New York Times yesterday. I blogged about it here.

Hakim was a collaborator in a series of articles called Abused and Used last year, which revealed widespread violence against and neglect of people with developmental disabilities in New York State group homes.

When the series was named a finalist for the Pulitzer Prize for Public Service in April, the Pulitzer board said it “revealed rapes, beatings and more than 1,200 unexplained deaths over the past decade of developmentally disabled people in New York State group homes, leading to removal of two top officials, movement to fire 130 employees and passage of remedial laws.”


I applaud Hakim for his work to expose the effects of disability hate. And I hope he'll think further on whether the word "retarded" as a descriptor for one of the most marginalized groups in society is fitting. Louise

Louise,

Thanks for the note. Obviously I meant no disrespect. Mental retardation is a diagnosed condition – you can look it up in the American Psychiatric Association’s diagnostic manual. We also explain it further here: http://health.nytimes.com/health/guides/disease/mental-retardation/overview.html We’ve actually used the term with some frequency, in headlines and elsewhere. And Ricky’s parents told me that was part of his diagnosis. It’s a bit of a quandary I guess. If it’s part of the diagnosis, I don’t like to leave it out, but I understand the feelings you and others have about the word. I think a copy editor decided to change it late that night, I assume because of the kind of concerns you raise. This term is still used in the medical profession, though, so it’s not a simple thing to always be ignoring it. Anyway, that’s my two cents.

Best,

Danny Hakim
Albany Bureau Chief
The New York Times

Monday, October 1, 2012

Word use and The NY Times: You disappoint me















I was surprised to see this "sell" to a story on the front page of The New York Times today:

"A New York State assemblyman who is a prominent advocate for people with disabilities plans to sue the organization that cares for his retarded son."

I turned inside to page 18 and read this lead:

"Ricky Weisenberg, 54, is severely retarded, cannot speak or even cry, and has cerebral palsy. But his parents know their way around the system: his father, Harvey Weisenberg, is a state assemblyman and the Legislature's most prominent advocate for people with disabilities."

I don't have access to the New York Times Manual of Style and Usage, so I wasn't able to look up its specific counsel on use of the word "retarded" by reporters.

But I was able to find this passage in the manual's foreword, which is visible on Amazon.com.

"This [style manual] counsels respect for group sensibilities and preferences that have made themselves heard in the last two or three decades -- concerns, for example, of women, minorities and those with disabilities. The manual favors constructions that keep words neutral..."

I think the preference of people with developmental or intellectual or mental disabilities and their families was made clear when over 300,000 people signed a pledge "to eliminate the demeaning use of the R-word" in the Spread the word to end the word campaign by Special Olympics.

Furthermore, if staff were looking for neutral language to describe Ricky Weisenberg, this would have sufficed: Ricky Weisenberg, 54, has cerebral palsy. He cannot speak or even cry. Nothing is lost in the visual image these words conjure in the reader's mind.

So just how did the word "retarded" get by whoever proofed today's front page of The New York Times and whoever edited page 18? Interestingly, the word is not used in the headline for the story, which reads: Lawmaker to File Suit Charging Abuse of His Disabled Son.

As a journalist, I get that people-first or politically correct language isn't always possible in headlines due to space limits. But the word "retarded" and the word "disabled" both add up to eight letters, so if the word "retarded" was that important for the front page and the lead of the story, why not the headline?

Who decided to use the word "disabled" in the headline, instead? Was it simply a wordsmith who was trying to ensure variety in word usage (not too many repeats on the word "retarded")? Or did someone feel that "retarded" wasn't a fitting descriptor for a person in a headline?

Or perhaps whoever wrote the headline made the connection that the story was about the alleged physical and psychological abuse of a vulnerable, middle-aged man in a group home -- a voiceless man who couldn't even express his anguish in tears -- and decided that referring to that man as "retarded" was not neutral or respectful.

went online tonight and saw that in the online version, the word "retarded" in the story had been changed to "has a severe mental disability."

It would be fascinating to hear the back story on how this came about and why. Louise