Friday, August 31, 2012

Upended





























It's not what I thought.

That’s the way I’ve described parenting a child with disabilities and especially intellectual disability, which I believe is the most stigmatized difference in our culture.

The unexamined images lodged in my psyche – that disability wasn’t normal because it didn’t “exist” in my schools or that it was shameful because my friend’s brother jumped from the back of the station wagon, head down, and ran inside when he was dropped off from his sheltered workshop – are inadequate to describe the richness and complexity of my son’s life.

I want to convey this to others who haven’t walked in my shoes. But often I can’t find the words, because maybe they don’t exist in our lexicon. I want to tell a story or take a photo that shakes people out of their clunky mindsets. But most people don’t really want to listen or see.

Perhaps that’s why I’m so excited about the work of Sue Austin, a British performance artist who’s shattering common perceptions about the wheelchair by taking it places it’s never been before.

As part of the Cultural Olympiad events in London, people are watching Sue move effortlessly underwater like a mermaid – except she’s doing it in a wheelchair.

Motors under the chair propel her forward while Sue steers two acrylic hydroplane “fins” that curve out from the footplate with her feet: up, down, side to side and loop the loop, like a pilot doing graceful air manoeuvres.

Sue appears weightless, unlimited, even glamorous – her long dark hair waving behind the chair, a rush of oxygen-tank bubbles escaping upwards and a school of exotic orange fish passing by.

But something about what Sue calls "Creating the Spectacle" upends the spectator. The liberating images of life under the sea jar with our conventional notions of wheelchairs.

“I wanted to open up a new space where people feel the clash of their preconceptions meeting this new image, and it allows people to view a wheelchair in a completely different way,” Sue says. "I wanted to create a narrative that frees everyone.”

Sue began using a power wheelchair in 1996 after a virus attacked her nervous system and she lost her mobility and balance.

“I’d become housebound and my first experience trying a power chair was ‘this is my freedom,’” she says. “It means I can get back out into life and into the world and it’s so exciting to be able to zoom along and feel the wind on my face.”

She left her job in mental health and went back to school to pursue a degree in fine arts. "It kept me focused on what I could do and how I could see the world in a different way that was valuable," she says.

"When you acquire a chronic illness or disability, you can get trapped into thinking your life has ended and focusing on what you’ve lost, rather than on what can evolve from living life in a different way.”

Even though Sue viewed her wheelchair as freeing, she felt weighed down by people who saw it as a symbol of something broken or limited. "The way people reacted to me completely changed. They saw disability as some kind of tragedy. I came to understand that I’d internalized that message.”

Sue decided to incorporate her wheelchair into her art “playing with it, painting it and I found people reacted really positively to it.”

In 2005 Sue learned to scuba dive and was intrigued with the idea of bringing together scuba gear and her wheelchair in an art performance. “The ideas attached to scuba equipment are ones of excitement, adventure and expansion,” she says.

Like diving gear, a wheelchair extends a person’s activity in the world. But when Sue asked people what came to mind when they heard the word wheelchair, they said “‘fear,’ ‘restriction,’ ‘limitation’ and ‘pity.’”

Sue worked with diving experts and engineers to turn a National Health Service wheelchair into one that could be operated underwater.

Her project “Creating the Spectacle” is one of 29 commissions for Unlimited, a program of the Cultural Olympiad and London 2012 Festival that celebrates art from disabled and deaf artists. It includes screenings of a film of her flying through the water that was shown as part of the Paralympic Flame Festivals, as well as live events in Portland linked to the Paralympic sailing events.

“I’m trying to create work that is so surprising that people don’t have a framework to understand it,” Sue says. “They can’t relate it to their ‘normal’ attitudes about a wheelchair so they end up having to go ‘Wow, how did you do that?' When non-disabled people see it they say ‘I want to go in one of those.’”

Sue describes diving with her chair as “complete freedom and joy. In future footage of the project I’m literally doing loop the loop and it’s like flying in space."

Sue credits her art training with enabling her to “refind my identity and a sense of creating something of value in the world. Through art I could create new stories about how seeing the world differently from a chair could have its own unique value.”

She wants to raise the profile of art shaped by people living with disability. “It brings their unique perspective into the world.”

An important part of Sue's art is the images it leaves in viewers' minds. "Once people have the idea of the underwater wheelchair in their mind, where it's never existed before, they become part of the artwork. They're expanding the intention of the art which is to transform preconceptions."

Patents are pending on her underwater wheelchair and she hopes to work on a future version that would give a person with quadriplegia the ability to scuba dive with mouth controls.

Wednesday, August 29, 2012

Mums sew together a new life for disabled kids
















A
sewing project is changing the lives of two dozen Kenyan mothers of children with disabilities. Malaika Mums, run by the humanitarian group Comfort The Children International (CTC), produces and sells reusable cotton tote bags and coffee sleeves. In addition to providing the mothers with a good wage, the income supports a school with rehab services for their children. The sewing project and school sit side by side in the town of Maai Mahiu, just northwest of Nairobi, breaking local stereotypes about disabled children and their families. I asked Martin Milimu, a CTC occupational therapist who works with the children at school and home, to tell us more.

BLOOM: What stigma is associated with disability in Kenya?

Martin Milimu: In Kenya, some cultural traditions hold that handicaps are a curse from God, shameful and reason to ostracize a child and his or her family. It is believed that the mother is a sinner and the child is her curse. Many children with special needs never leave their home, hidden from the community.

BLOOM: How are children with disabilities and their families treated and what does having a child with disability typically mean for a family there?

Martin Milimu: Children with special needs are often considered cursed and continue to be systematically excluded from public schools, creating even more stigmatization within the larger community. Malaika Kids was created to combat this injustice by providing therapy and education to children with special needs in Maai Mahiu. Public rehabilitation funding is an area that is starting to be explored here in Kenya... On assessing a child with special needs, we sometimes find that fathers have left the mother…”

BLOOM: Do mothers typically become full-time caregivers?

Martin Milimu: The extent of the impairment a kid presents with dictates whether the mother will become a full-time caregiver or not… Most mothers whose children have severe special needs struggle with the difficult choice of going out to work and leaving the child dangerously unattended, or staying home to provide care all day and thus not earning any income.

BLOOM: When did you begin the sewing project and why?

Martin Milimu: The Malaika Mums project and Malaika Kids program were started in 2008 by CTC. The vision is to provide a sustainable, income-generating project for mothers of special-needs children in the community. The mums have an opportunity to earn an income for their families, support an education for their children and create products that improve the environment.

Malaika is a Swahili word which means ‘angel.’

BLOOM: What are some of the products?

Martin Milimu: They’re called LIFE (Livelihood, Invest, Future, Empower) Line. They make reusable cotton bags with graphics related to our programs, messaging or individual customer needs. One of our current bags features a group portrait of the women that make them. They also make reusable cotton coffee sleeves that protect your hands and the environment. One LIFE Jacket can save almost 18 pounds of trash a year.

BLOOM: Is Whole Foods the major buyer of the tote bags?

Martin Milimu: Yes, Whole Foods Market is our major international buyer for the LIFE Line products. The products are purchased through Allegro Coffee, Whole Foods’ coffee supplier and can be found at the Allegro coffee counter at Whole Foods. We also sell these bags locally here in Kenya and in numerous shops throughout the U.S. Whole Foods is also our major client for coffee sleeves – LIFE Jackets. Zazzle.com has also been a huge supporter of the LIFE Jacket and feature them on their online retail website. We also have partnerships with several coffee distributors and have merchandise in over 25 smaller coffee shops around the U.S. Bags and sleeves can be ordered online.

BLOOM: What is the goal of the sewing project?

Martin Milimu: By working together, helping each other, and building a sustainable business, the Malaika Mums have breathed new life into the community of Maai Mahiu while supporting the development of Malaika Kids, the only special-needs program here providing rehab therapy, structured education and nutritional support.

BLOOM: Do all of the children of the sewing staff attend the school while their mothers work?

Martin Milimu: Nineteen of the mums have children with special needs in Malaika Kids, and two of the mums have physical disabilities themselves. The Malaika Kids are located next to the Malaika Mums so the mums can check in on their kids throughout the day. Another 12 kids attend our children’s program, but their mums do not work with the sewing program.

BLOOM: What types of disabilities do the children have?

Martin Milimu: They have various physical challenges that include cerebral palsy, rickets, spina bifida, hydrocephalus, one-sided weakness and muscular dystrophy. Cerebral palsy is the most common medical condition. Some kids have dyslexia, Down syndrome and intellectual disability.

Twenty-five students aged three to 18 are enrolled in the school. Two students commute weekly from hospitals nearby to participate. Three specialized classes – Shooting Stars, Happy Angels and Busy Bees – cater to children with varying needs, from physical impairments to brain and development disorders.

BLOOM: Do you find that the mothers’ attitudes toward their child’s disability change as a result of working with other mothers?

Martin Milimu: Almost every Malaika Mum has said that before joining the program she thought that she had the only child with special needs in the entire community. They have expressed great gratitude at having a community of support where they can share the difficulties and triumphs as they raise their children. Knowing they are not alone has been one of the most widely-stated benefits of the program.

The mums are happy to have their kids receive these fundamental services and they feel as though CTC has helped their kids reach the next level in their development. The mums are empowered to be proud of their children instead of ashamed.

BLOOM: What are typical daily activities at the school? How is the school funded?

Daily activities include developmental therapy… to promote function and reduce dependence and structured educational programs to help these kids attain academic skills.

Income from LIFE Line products helps fund the Malaika Kids program.

BLOOM: How is the sewing project funded?

Martin Milimu: The sewing project is mainly funded by the sale of LIFE Line products. It's also supported by individual donors.

BLOOM: What are some of the changes you’ve seen in the mothers – and in their children – since they began the program?

Martin Milimu: These women now have a steady source of income, the comfort of knowing that their children are receiving the attention they deserve and a true sense of pride in themselves. This income allows them to fully support their children’s special needs, the needs of their entire family and break the cycle of poverty. The Malaika Mums are well respected members of their community, reshaping conceptions of women and special-needs children.

BLOOM: Have you seen any changes in attitudes toward disability in the community?

Martin Milimu: There has been a series of changes from stigmatization to acceptance of special-needs kids in the society as a result of the [programs], following sensitization about special needs and the fundamental services these kids... benefit from. Currently, many children in the community with special needs are being brought here for assessments and advice and many are on a waitlist to join the Malaika Kids program. Unfortunately we can’t accommodate all of them because of our limited space and inadequate resources (staff and equipment).

Check the winter issue of BLOOM for an interview with Joyce Njeri, 23, mom to Tabitha, 7, who attends Malaika Kids. Photo by Chelsea Dee. You may also be interested in:

Kenya National Survey for Persons with Disabilities 2008

State of Disabled People’s Rights in Kenya 2007

Tuesday, August 28, 2012

How do culture and disability connect for you?















By Anchel Krishna

Like many others in the Toronto area, my parents are immigrants. They came to Canada in the 70s from India, their first date was at the CN Tower and after a few years of being married they started their family. My husband, Dilip (above with daughter Syona and I), is in the same boat.

Our marriage started with a pretty typical Indian wedding extravaganza (several days of celebrations filled with music, food, lots of colourful, traditional clothes and hundreds of our closest family and friends). And like many other newly-married couples we enjoyed a few years of dual-income, no-kids living before settling into suburban life and starting a family.

Almost two years ago our daughter, Syona, surprised us with a slightly early arrival. Shortly after she was born, we learned that there had been some unknown issues with the pregnancy that resulted in a specific type of brain damage that increased the risk of several conditions, including cerebral palsy, seizures and learning delays. As the year progressed and Syona continued to miss milestones, she was diagnosed with cerebral palsy.

The saying “it takes a village to raise a child” is definitely true in our case. Our house has a revolving door and the regular players include both our sets of parents, my sisters and their husbands, some cousins and Dilip’s brother and his family when they visit from Vancouver. Similar to many other cultures, this type of closeness is the norm for us. We have a built-in support system, Syona is surrounded by so much love and we have a half-dozen ready and willing babysitters on speed dial.

When Syona was diagnosed, there was one thing we knew for sure: we wanted to be as open as possible. As the Special Needs Parenting blogger for Today’s Parent I’m fortunate to have had that opportunity. And though I don’t delve into Syona’s MRI details with every person I meet, I don’t shy away from telling people about Syona’s diagnosis and how her abilities impact our lives.

There are a few strategies that might make talking about your child’s special needs easier:

• Get comfortable with the information you want to share. I used everyday situations to practise telling people about Syona’s condition, without sharing unnecessary details. My favourite place to practice? The casual conversations with other parents at our local park.

• Focus on your child’s abilities. I’ll usually start off by telling people about what Syona can’t physically do, but I spend the majority of a conversation sharing Syona’s likes, her progress and what she is able to do.

• Set and share your comfort zone. When Syona was diagnosed our family wanted to know if they could tell people. We encouraged them to share Syona’s diagnosis and also gave them some information about the condition so that they were informed and could answer some of the questions that came up.

• Model the behaviour. We tend to be annoyingly positive people most of the time (don’t get me wrong, we have bad days, but mostly, we’re a happy bunch). So many people have asked me how it is that we stay positive and the answer is simple: we truly enjoy our life. Syona is a funny, spirited and happy little girl (most of the time). There are a lot of small joys that we experience every day. We take time to laugh. So far, I don’t get a lot of pity or sympathy (and that makes me happy). I’d like to think it's because people see that we are happy with our life.

• Be respectful. Like I said before, Syona’s “village” is made up of lots of individuals that all have their own ways for accepting this unexpected turn of events. Some of them turn to religion and prayer for comfort, others look to us for guidance and many just accept things after seeing how happy Syona is. Let people get comfortable in their own way.

• Use community resources. Your child’s case manager or therapists might be able to provide insight. You may even have a community group or leader that advocates for special needs in your community.

• When people ask us questions, we treat them as opportunities to raise awareness and educate. I’ve found that questions usually are inspired by lack of knowledge (yes, even the offensive ones). Instead of getting offended, steer the question back to what is appropriate. And if you’re not comfortable answering a question or don’t know, just be honest.

Like any culture, there are varying levels of acceptance about special needs in the South Asian culture. Our family is a little more immersed in special needs advocacy than most. My husband’s aunt and uncle both have muscular dystrophy and run a school in India that integrates special needs kids with typically developing children. My mother-in-law is the founder of Handi-Care International, a charity to help raise funds for the school in India.

But not all our interactions have been sunshine and roses (both inside and outside our cultural community). There are people who look for those miraculous “cures” to what is “wrong” with my child and those who act as though our life is a tragedy or a curse.

Because of Syona’s diagnosis I’ve met several amazing friends (those who have kids with special needs and even many of her therapists). The truth is, I’d love to meet some South Asian parents that have children with special needs and start building a community network (Imagine a Bollywood dance class for kids of all abilities. How cute would that be?).

Since Syona’s diagnosis, both Dilip and I have become more optimistic than ever before. And many days, I look around and think that our life is perfect in its own imperfect way.

How has your cultural community reacted to your child’s special needs? Please share the ups and downs here in the comments! We'd like to include a piece on culture and disability in the next BLOOM magazine and would like to hear a variety of perspectives. How is disability viewed in your culture?

Anchel Krishna is a freelance journalist with experience in strategic communications who cares for her toddler while attempting to string together coherent sentences. She is also the special needs parenting blogger for Today’s Parent Magazine. You can connect with her on Twitter or email her at anchel.writer@gmail.com.

Monday, August 27, 2012

More than words, part 2






















I said I would write more about our journey to give Ben a conventional voice. This is primarily a recounting of an enormous number of things that we "did" over many years, not really an examination of how it "felt" as a parent to be doing these things, which is probably more  enlightening. That will be for another day! Louise

I was visiting my family doctor. Ben was in his stroller, babbling exuberantly and charming the others in the waiting room.

The doctor came to get me and listened in. "I cannot WAIT to hear what he says when he speaks!" she said.

That was the hope that pushed me for the next eight years.

From the time Ben was two I pursued every known therapy and medical intervention that might bring us one step closer to speech. These are documented in stacks of binders of speech, hearing, swallowing and medical assessments and program plans.

I had big dreams and was capable of mounting large campaigns on my son's behalf.

At two years, two months, I had Ben privately assessed by a PROMPT therapist in Toronto (publicly-covered therapy didn't begin until age three in Ontario way back then). PROMPT was the "big" speech therapy here then, where therapists support a child's oral-motor movements by cuing the mouth and lips with their hands. The therapist said he had mild to moderate low tone of his oral/facial muscles that made it difficult for him to control phonation, jaw, lip and tongue movements. "Ben was observed to use up to three word utterances for a range of communicative functions," she wrote.

Over the next year we had many different therapists work with Ben. One PROMPT therapist saw him weekly. "I really like the new therapist," I wrote to a friend at the time. "I love the way she interacts with Ben. She always has some specific activity ready to work with him. They generally sit at a little table together. Ben usually loves whatever she has him doing, and really listens to her and does most of what she asks. He said two things at the last session -- 'oben' for open and 'go away.' He still has just about five to 10 words that we hear often. There are many sounds he is physically unable to make. The therapist says the problem is oral-motor low tone. She said everything is in place to help Ben now, and to give it a year and hopefully we will see some real progress." This therapist also suggested he had auditory processing problems, because he didn't respond to sound the way he should.

In fact, Ben had a permanent, moderate hearing loss in both ears -- which was magnified by constant middle-ear fluid due to structural problems with his eustachian tubes. But that hadn't been identified yet.

At 18 months Ben had his first set of ear drainage tubes put in to combat severe chronic ear infections and middle-ear fluid. While still under anesthetic he had an evoked potential hearing test and we were told he had moderate loss in both ears and needed hearing aids. I just looked up the hospital note (which I only purchased years later) and it says results showed a bilateral, moderately severe sensory neural hearing loss. However, the surgeon said he'd never drained such copious amounts of black fluid from a child's ears before and there was a question as to whether the hearing test was a true reading.

I thought about leaving that part that way.

But to be honest, the question about the accuracy of the test was raised by me. I called the audiologist and asked whether the reading could be affected by the huge amounts of liquid that had just been removed from his ears. Part of me couldn't believe that Ben's hearing was that bad because we had taken him religiously for hearing tests since he was a newborn. And part of me didn't want to put hearing aids -- and their associated stigma -- on my 18-month old. The audiologist said it was possible that the middle-ear problem had compromised the results. She suggested we hold off to see if we might get a closer to normal hearing test in the studio.

On sound-field tests -- where they pipe sounds into different sides of a room and if the child turns to the sound a box with animals dancing in it lights up -- he was testing in the borderline normal range. And following the evoked potential test, he continued to test in that range on what I think is a highly subjective measure. We now know those tests were wrong. Ben was visual. I believe his eyes were peeled for those dancing bears and his visual perception was mistaken for hearing. Despite frequent trips to audiologists, Ben wouldn't wear hearing aids regularly until age five. In an audiology report from our local audiologist at age five it says: "Ben has persistently demonstrated borderline [normal] hearing levels.”

It wouldn't be till he was nine that he had a videoscope (on a private consult we had in the U.S.) which showed he had abnormally small, compressed eustachian tubes which caused the fluid build up and malfunctioning of eight sets of drainage tubes. They blocked almost as soon as they were put in. We were forever squeezing ear drops (that never dislodged anything) in Ben's ears. But the drops caused him great pain. In anticipation of the dreaded drops, he quickly learned to cover his ears when I put him down at night.

For all those years I'd been convinced that Ben's ear infections were caused or exacerbated by my bottle-feeding him. I'd failed the cultural edict of "Breast is best." When I raised this question at the appointment at age nine, still consumed with guilt, the specialist laughed (but in a good way!). "His ears are structurally abnormal," he said, pointing to the image on the screen. "This has nothing to do with breastfeeding."

Sometimes I wonder what might have happened if I hadn't questioned the veracity of the evoked potential hearing test and been so persistent about it. And we had simply proceeded with hearing aids. That said, it was impossible to keep aids in his ears when they were infected.

I think we got his first pair at age four. The audiologist still wasn't convinced that he needed them. It was quickly apparent that the behind the ear aid wouldn't work because Ben's ears were so outstanding that the aids flopped forward and waved about. We got in-the-ear-aids, but because of his painful ear infections, he would not keep them in his ears. At one hearing test, when D'Arcy tried to put them in, Ben fought and cried until D'Arcy ended up in tears. The audiologist said she thought he was getting good sound input without them and we didn't need to persist. At the time Ben was in a junior kindergarten program for kids with physical disabilities but he didn't wear them there either: we were told that a staff person couldn't follow him around constantly to make sure he didn't pull them out and lose them. And at the back of my mind there was always the fear that if in fact his loss wasn't significant, the aids could cause damage.

In addition to speech therapy, we decorated the house with picture symbols and had a picture communication book. Ben was good at getting the book to show us what he wanted. When a therapist wasn't willing to prescribe a sophisticated voice device for Ben (because she wanted us to start with one with only four messages on it) I got a distributor to loan us one for free. I then videotaped Ben using it and went back and complained. We got the Dynamite funded under the assistive devices program. But though Ben became quite good at using it, it wasn't functional for two reasons: It was heavy and he couldn't carry it by himself and it wasn't organized in an intuitive, user-friendly way. It was based on pages and pages of embedded vocabulary, much like a dictionary. Can you imagine having to locate a word in a dictionary in order to use it? And then look up the next word? It took so long he lost incentive.

Because I was on American parent e-mail lists for kids with disabilities I began to hear about types of speech therapy we couldn't access in Toronto.

In addition to his low tone, Ben had picked up the diagnosis of apraxia -- a disorder where the child knows what to say but can't sequence the motor plans necessary to produce words.

And before he turned two he was diagnosed with an uncoordinated swallow, which had been the cause of many choking episodes when he started to eat real food. When Ben swallowed, not all the food went down. Some pooled at the back of his throat. So he needed to do extra swallows or he would choke.

"I thought I had accepted that he had a swallowing problem and that it was related to his low tone," I wrote at the time. "Yet when the OT came out after the feeding study and told me he did in fact have a problem, but that it was an uncoordinated swallow -- probably to do with his genetic condition rather than low muscle tone -- I was shocked and full of grief. My husband couldn't understand why I was so upset. It was then that I realized that somewhere in my heart that little flame of hope had been burning, the one that can lead me to believe things may be all right, even in the face of insurmountable evidence."

When Ben was 4 1/2, we took him to see Nancy Kaufman in Michigan. Nancy was the North American guru for treating apraxia by getting kids to do word approximations: boo boo (hurt finger); neigh neigh (horse); wuh wuh (dog); wa wa (water).

A few weeks before we left, I went back to church. I didn't know how to help Ben speak and my best rational attempts weren't working. I was desperate. During a snowstorm one Sunday only a handful of people turned up. Instead of a regular church service, the minister had us sit on the stage together for an informal gathering. We had an opportunity to ask for prayer and I asked that they pray for our visit to Michigan, and that it would help my son Ben, who was unable to speak. An older man turned to me and said: "Maybe God doesn't want your son to speak. Have you ever considered that?"

"No" I railed. "I don't believe in a god who won't allow my son to speak."

Nancy felt Ben’s speech problems were largely physical -- due to low tone, oral-structural deviations (small lower jaw and mouth; tight, then lips; receeding chin; velopharyngeal incompetence) and apraxia. She was thrilled when he scored well on the Peabody Picture Vocabulary, which tests single-word comprehension. She said he wasn't ready to begin her apraxia program because he first needed to improve his oral muscle strength and coordination. She also felt we needed a second opinion about whether surgery could fix some of his structural problems.

I was ecstatic that Nancy seemed to be drawing a more precise path to the treatment of Ben’s speech problems.

I was the one driving all of our therapy efforts and I had to convince D’Arcy of the merits of these expensive consults. I can see now that I had blinkers on. In order to research, arrange and afford these trips, persuade D’Arcy and make the long drives manageable for our two little kids, I had to be single-minded.

Five months later we drove to Westchester, New York to see Sara Johnson, the renowned expert in oral-motor therapy. Ben was four years and nine months. Sara diagnosed him with a severe oral-motor/feeding/speech disorder secondary to weak muscle strength in the muscles of the abdomen, velum, jaw, lips and tongue; motor planning deficits -- dyspraxia; hearing loss; and structural deficits.

We had to focus on strengthening his muscles through oral and feeding exercises to give him a base from which he could speak she said. Her recommendations were oral-motor/feeding/speech therapy two to three times a week. And 15-20 minutes of oral exercises daily.

We couldn't find a therapist locally who followed this program, so Ben's worker and I did our best with the daily exercises.

They included pre-feeding massage of his face; rubbing swatches of fuzzy, soft, smooth and rough fabrics on Ben's cheeks; rolling a vibrating toothette in Ben's lips in a variety of ways; and having him kiss a small ice cube.

Feeding exercises included using a particular curly straw and getting Ben to chew cubes of food at the side of his mouth.

Oral-motor exercises included blowing exercises with candles, bubbles and whistles. It was suggested I "construct a birthday cake out of styrofoam, tin foil and other decorations, place a candle in the cake, and provide jaw/lip support while Ben blows out the candle five times."

I'm not a crafty person, and I often felt defeated before I had even begun the set up for these activities.

Other oral-motor exercises included making ice straws and having Ben bite in a certain pattern on each side (this could also be done with veggie stix, which weren't yet available in Canada, so I purchased them in bulk in the US). Finally, we had a number of exercises related to Ben chewing gum on both sides of his mouth.

For the next year or so we would travel to Albany, New York (half the distance to New York City) to see one of Sara's associates every couple of months.

When Ben was five we got a second opinion on surgery to correct his oral differences at the New York University School of Medicine. Again, because I was on parent e-mail lists, I heard about monthly team meetings that were held at NYU bringing together multiple specialists to assess children with complex cases.

One mother wrote about a plastic surgeon there who had the highest rate of success in performing velopharyngeal flap surgery, which is used in kids whose palate doesn’t close properly during speech, causing air to escape through the nose and making consonants impossible.

It was thought that Ben had this problem, particularly since as a young child when he drank, liquids came out his nose.

This mom had contacted all of the surgeons across the U.S. to determine their surgical effectiveness – because a rare but scary complication of the procedure is that it can cause sleep apnea.

We drove the 10 hours to Manhattan and stayed for a nominal amount in a medical resident building right across from the hospital.

Ben was ‘presented’ in a large meeting room to a bunch of doctors and therapists and promptly crawled under a table.

He was seen by a plastic surgeon who said he definitely needed the pharyngeal flap surgery. But the catch-22 was that he couldn’t do the surgery until Ben had more speech (which would determine the type of closure needed).

We also saw an audiologist who insisted that Ben must wear hearing aids. He told us that even a mild hearing loss can turn into a major disability in a child with complex problems. Armed with this knowledge we returned home and succeeded in getting Ben to wear the aids (I don't remember what bribes and enticements were used).

We continued on with PROMPT therapy at home – at one point having four 30 minute sessions a week that cost about $700 a month. In addition, we were also able to get some blocks of publicly covered therapy.

Ben’s PROMPT therapist wrote: “Ben is a boy who demonstrates significant delays in body awareness, oral motor execution and sequencing skills, language skills and possibly auditory processing...Ben’s ability to plan some oral motor sequences independently is increasing, such as “no,” “yeah” “me” “on” “one, do/two, dee/three.”

When Ben was six we took him to see a developmental pediatrician at Holland Bloorview. I was frantic about his lack of progress over time. He always had a handful of word approximations but they never blossomed into anything more and sometimes he lost words. I'd never worked so hard at something in my life and had so little success.

"Things would have been different if Ben hadn't had severe constant ear infections for so long during such a critical period," the developmental pediatrician said. But he did, and the doctor felt his problems with speech were related to a central language output problem.

"It is my firm conviction that he has much more 'language' in his head than he is able to express with oral language," he wrote in his note. "I strongly encouraged Benjamin's parents to consider reinstitution of sign language."

We had introduced Ben and Lucy to sign earlier on, but Ben had only picked up a few signs and he couldn't manipulate his fingers into some signs. The doctor felt Ben would never make progress with spoken language but that sign held much greater promise.

He wrote to our schools for the deaf to ask about Ben receiving services or attending their school, but was told that his moderate hearing loss didn't meet the threshold for service. I feel that was a critical juncture where the system let us down.

A few weeks later we registered for a sign-language immersion camp for adults run at the Bob Rumball Centre for the Deaf. We rented a nearby cottage where a worker stayed with Ben and Lucy during the day, while D'Arcy and I and a SECOND worker went to sign-language immersion for adults. This was a costly endeavour but we felt it was valuable.

Under the sea, on wheels


British artist Sue Austin shows off her self-propelled underwater wheelchair developed with the help of dive experts and researchers. It's powered by two dive propulsion vehicles and steered with a bespoke fin and foot-operated acrylic strip.

Saturday, August 25, 2012

One cool life


Nike steps up to the plate with new shoe design


Here's an exciting update from Matthew Walzer, the Florida teen with cerebral palsy who asked Nike to make a shoe that doesn't have to be tied.

Bravo Nike!

Friday, August 24, 2012

The upside of weakness















Elizabeth Aquino kindly passed me a link to this interview (click on the podcast at top left) with French geophysicist Xavier Pichon who believes that fragility and empathy make us human.

"...I was very, very impressed by...the way earthquakes are fabricated, which is in the lower layer of the earth where the temperature is high, then the defaults that are within the rocks are activated and the rocks are able to deform without fracture – they become what we call ductile, they flow. But when the temperature is low and cold like in the upper few miles of the earth, then the rocks are rigid, these weaknesses cannot be expressed, and as a result the rocks are much more resistant...and they react by reaching their limit of resistance and suddenly – bing – you have a major commotion and an earthquake.

"The difference is in one case the defaults play a role in putting weakness in that and making things much more smooth. And in the other case it’s very rigid and I find in the society it’s very often the same thing in the community. The communities that are very strong, very rigid, do not take into account the weak points of the community – the people who are in difficulty – tend to be communities that do not evolve. And when they evolve it’s generally by very strong commotion, by revolution."

Parenting, off the grid
















I can't remember how our paths crossed, but I've followed Sara Pot's blog The Pot Family for a while and it was a treat when Sara and her husband Ralph attended our talk with Ian Brown. I asked Sara to tell us a bit about her family. The photo above was taken by Elma Regenerus. Check out this post of Sara's for more photos of this one-of-a-kind family. Louise

I've been told that I am a reflective thinker  or maybe even too reflective. Truth is, since the birth of our two youngest daughters, I find myself questioning all the patterns and parameters I had previously assumed. Raising children who need unique care plans and unassuming expectations (can't assume any typical milestones) has challenged my perspective on living. We're in a society that is inundated with information and advice on how to parent and live, but many of us are raising kids that don't fit a typical pattern, whose lifestyles don't fit a tidy set of parameters.

Ralph and I have four daughters: Emily is 10; Sophia is eight; Rachel is six; and Janneke is three. Emily and Sophia achieved the typical milestones in their early development. As they aged, we also grew as parents, learning from our mistakes and celebrating their achievements. Their personalities are very different from each other, yet they both make us laugh and they both have a passion for their little sisters.

Rachel and Janneke are similar to each other but unique from other children. They are globally developmentally delayed, with a diagnosis that is currently under investigation. Both girls are affected in all areas of living, including eating, communication and mobility. Rachel and Janneke are g-tube fed 24-hours a day, and their sounds are similar to a baby, still exploring her voice. Janneke is able to use a Pacer (a walker) to move around on her feet, and Rachel uses a standing frame for periods of time throughout the day. Both girls are unable to independently stand or bear weight on their feet.

Rachel and Janneke are cheery girls, with smiles for those who provide their care. Their joy balances the tears, frustration or middle-of-the-night anger I might have when managing the tube-feeds, dealing with doctors and specialists, and recognizing the limitations placed on our family.

Ralph and I cope with humour and, more importantly, with our faith in God. We might wrestle our entire life with why our girls are disabled, but there are some questions that will remain unanswered. I'd rather choose joy and figure out how to make the most of what we've been given. We trust that God will give us the strength we need, one day a time. And hopefully, the better days will outweigh the crappy ones!

Thursday, August 23, 2012

More than words, part 1















I love to talk.

It began with my family and childhood friends and blossomed at school and in my initial work as a journalist.

Talking was central to what I judged to be most meaningful in life.

I had the gift of the gab and found silence awkward and uncomfortable – a void I needed to fill. If I was nervous, I could talk your ear off. As a child, I grilled my babysitters on endless subjects when they turned off the light and tried to extract themselves from my bedroom:

"What is your favourite colour?"

"Who is your religious leader?"

"What if it was the third period of the 1972 Canada-Russia hockey game and Paul Henderson had to go to the bathroom?"

Once a psychologist told me that I used conversation to control situations and glide above my own insecurities, dictating the topics and drawing out more from a person than they probably wanted to tell.

But I was raised in a home where talking to people and showing an interest in their ideas and lives was highly valued.

Before Ben, I always thought of speech as being automatic and related only to thought: you think something and then it comes out in words.

I didn't realize that, in fact, talking is like walking – a motor activity involving a complex interplay of breathing skills and lip, jaw and tongue movements.

It was incomprehensible to me that someone couldn’t speak. I guess I had read about children who were non-verbal, but it was something completely outside my experience.

Ben babbled exuberantly at 3 weeks. I still have the photo D'Arcy took of him propped up on my knees facing me, interacting. At seven months, other mothers in a play group marvelled when I passed him to someone to hold and he cried clearly: "Mama, Mama!"

At 1 he referred to his favourite Sesame St. character – Elmo – as Elma. Bottle was "bo" and "Be go bo" meant Ben go bottle. Apple was "apu" and Daddy was "Uma." His pediatrician noted that he was talkative and sociable for his age.

Severe recurrent ear infections kicked in then and we didn't know Ben also had a permanent moderate hearing loss in both ears – made worse by constant fluid in his ears. We later learned he had a submucous cleft palate and related abnormality of his ear canals. This explained his constant ear infections that didn't respond to prophylactic antibiotics or eight sets of surgically-placed tubes to drain what one ENT described as "copious thick black fluid.”

It was at about this time that I learned that severe speech delay or absence of speech was a symptom in some descriptions of Ben’s syndrome, called Langer Giedion.

Given my love of talking, and the general value our culture places on speech and people who speak well, this frightened me.

The anxiety that had attended waiting for Ben to sit, stand up and do other typical motor activities – while taking him to therapy and carrying out a million exercises at home – was now overshadowed by the weight of: "How am I going to get Ben to talk?"

I asked about speech therapy, but learned that in Ontario it didn't traditionally start until age three.

At about age two, I managed to get a speech therapist through our home-care service to visit, and she assessed him as being at an 18-month level for speech (I often go back to her document, just to prove to myself that he really did have some speech early on).

She came for two sessions and was fabulous -- but she was retiring. The person who replaced her was a new speech pathology grad who specialized in working with seniors with swallowing disorders. She spent her visits chatting with me and didn’t come for long.

We began private sessions with a program called KidSpeech. “Ben says ‘owl’ very clearly,” wrote the therapist in April 1996.

One night as I went into his room for a second time to tuck him in his crib, he said, as clear as day: "Hi Mom."

Another time, he was pulling vegetables out of the crisper and said: "gwee peppa" for green pepper.

He said up and “oben” for open and “bubbu” for bubbles and “weh” for web (as in the spider's web in his Eric Carle book). He said "Gobuh" for "Goldbug" – a favourite character in his Richard Scarry series. “I wa” was I want.

Tuesday, August 21, 2012

Buddies: A new Brazilian film

'Conformity doesn't beget greatness'














Ben, D'Arcy and I saw ParaNorman on Friday. It's about an 11-year-old boy who's branded a freak at school because of his ability to communicate with the dead.

The movie is the result of 3D stop-motion animation. Handmade puppets are brought to life by animators who move them one frame at a time, 24 frames a second.

I liked how lead animator Travis Knight described the value of Norman and the team who created him in the Globe and Mail.

"We live in a world that wants to burnish the rough edges and straighten the crooked line, but conformity doesn’t beget greatness,” said Knight. “What resonates with me is that the very thing that sets Norman apart is the thing his community needs. Norman’s story is also the story of the people who made the film – the freakshow, the weirdoes, the people who see the world in a different way and thus enrich it.

...“Norman is just a nine-inch tall puppet,” Knight says. “One of the things that gives stop-motion its inherent magic is that you’re seeing something imperfect and thus undeniably human – because it’s made by human hands.”

Monday, August 20, 2012

Goodbye (unrealistic) dream













Today I'm getting rid of these how-to books and kits for kids with speech problems. They date back to when Ben was a preschooler and I was heavily invested in trying to get him to talk. I brought them in to work years ago to pass along to a speech therapist, but somehow they stuck with me, like the lists of words that Ben spoke as a toddler but hasn't uttered in 15 years.

These books once had a place at home in a cupboard along with bulk quantities of coloured horns of all shapes and sizes, straws, tongue depressors, teddy bear bubble blowers, pink sponges on sticks to stimulate the gums, plastic tubing to chew on and a deck of recipe cards with typed instructions on how to perform a gazillion mouth, tongue and cheek exercises.

If I could only buy enough supplies, perform enough oral-motor exercises, squeeze out enough word attempts.

More to come on why it was particularly hard for me to accept that my child would never speak.

Friday, August 17, 2012

Does pressure to walk prompt 'over-therapy?'

By Megan Jones

Like many kids with cerebral palsy, Crystal Chin’s childhood revolved around a single goal: learning to walk.

The 23-year-old can list off the interventions she’s received with dizzying speed: orthotics, bracing, physio, Botox therapy, heel-lengthening surgeries, occupational therapy.

“Everything was about ‘If we can just get you to walk. If we can just get you to walk, people will think you’re normal,’” says Crystal, a member of Holland Bloorview’s youth and family advisory committees.

From an early age, Crystal learned that walking in our culture meant more than mobility, it conveyed a certain social status.

In fact, in a recent Holland Bloorview study, standing and walking were identified as signs of worth, dignity and autonomy by children with cerebral palsy and their parents.

Both parents and children recognized this social importance of walking, says lead scientist Barbara Gibson, and this affected parents’ rehab choices and perceptions of success.

Six children with cerebral palsy and six of their parents were interviewed in the pilot study.

All parents described independent walking as the long-term aim for their child, and reported doing everything they could to advance that goal. They often experienced anxiety and guilt when choosing to forgo or stop interventions. Many reported feeling they hadn’t done enough if their kids’ therapies weren’t successful.

Barbara says these attitudes can lead to an over-emphasis on walking in therapy. While she agrees it’s important for children with cerebral palsy to work at strengthening their muscles and keeping fit, she cautions that focusing too much on walking detracts from kids’ development in other areas.

“[Therapy] consumes a tremendous amount of energy, resources, time,” she says. “It leaves less time to just be a kid.”

Crystal agrees. She says she dedicated so much time to therapy that she was oblivious to activities popular among other kids. For example, as a young child, Crystal says she wasn’t aware that kids had birthday parties. At home, board games like Connect Four were used as forms of physical therapy, not fun.

While overall she’s thankful to have had access to therapy, Crystal wishes she’d spent less time fixated on learning to walk. For her, focusing on what she couldn’t do led to a feeling of inadequacy.

“It made me feel like I wasn’t good enough because...there were people trying to help me and I couldn’t even help myself,” she says.

Crystal and Barbara point to the need for candid, ongoing communication between families and professionals to alleviate feelings of inadequacy in children and guilt in parents and help families understand what goals are achievable.

“It would be great if clinicians felt comfortable saying ‘This is what the child is
going to be left with, and you’ve done a great job of getting to this point, but it’s okay to stop,’” Barbara says. “I think parents need to hear that.”

Barbara says that many parents, particularly those who’ve just received a diagnosis, may have trouble processing the information given to them by doctors. At the same time, some physicians and therapists may avoid providing a prognosis about walking because they fear dashing parents’ hopes.

To parents struggling with how much emphasis to place on therapy, Barbara recommends focusing less on walking and more on mobility. That’s because certain ways of moving are more useful to childrenin particular situations.

For example, some children find wheelchairs work best at recess or play times because they allow kids to keep up with their friends. Others may like crawling in private spaces because they’re able to navigate physical obstacles more easily.

Barbara says that parents of older children reported that they became less preoccupied with their child walking over time, as they became more comfortable with their child’s disability.

For Crystal, mobility with her wheelchair has taken precedence over walking. She says she only walks about 30 per cent of the time now and likes her wheelchair because it allows her to be independent.

When asked if all of her therapy was worth it, Crystal says it taught her to transfer independently from her chair, which is an important skill.

“Yes, there were some gains,” she says, “but I think there needs to be more of a balance. And I can understand how hard that can be for a family that wants something so desperately for their child.”

Wednesday, August 15, 2012

The monsters in us















Yesterday my blogging friend Meriah Nichols had a piece published in Mamalode called Be not afraid. It’s a candid piece about looking out the window while feeding her daughter Moxie, who has Down syndrome, to see a group of children with special needs walk by. In that moment Meriah is overcome with fear that Moxie will one day be part of that group.

“I’m heart-stoppingly scared that Moxie will be like those kids,” she writes. And at the same time: “I’m deeply ashamed of that fear.”

Meriah’s young son asks his mother, who is now crying, if it’s because of a monster.

“I started to say no, but then I realized I was – monsters, after all, were invading my brain. So I nodded yes. ‘Be not scared of monsters, Mama.’ The boy responds. ‘You should not be scared of monsters.’”

I imagined that the monsters in Meriah's mind were stereotypes about people with disabilities she would have learned as a child. We all pick up cultural values about what is good and what is bad, who is accepted and who is not, without even being aware of it and those biases live in our memory, often at an unconscious level.

The monsters Meriah feared, I think, were depictions of people with disabilities as less than human, somehow lacking, worthless, and so to be feared, as if human indignity could be caught like a flu bug. And Meriah wanted to protect her precious daughter – and herself – from that emotional sting.

Thoughts can pop into our minds that don’t reflect our current way of seeing things. Instead, they are the regurgitation of culturally dominant fears and biases we grew up with. These storylines may surprise us because we weren't even aware we were carrying them. And when they rear their ugly heads they can feel real and threatening.

I think that's what happened in Meriah's story.

It’s not pleasant when this mental "stirring up" happens, but I’m glad it does, because unexamined, these ideas, embedded in our subconscious, can impact how we act.

Which leads me to The Cyclops Child, a piece by Dr. Fredric Neuman published in Psychology Today earlier this month. Oddly, this commentary is published under the header Fighting fear: Confronting phobias and other fears and yet it is a doctor’s account of his own inability to see a child with serious malformations as human, and the fear this engendered in him and his coworkers. Dr. Neuman, we are told, is now an expert in anxiety disorders.

Over 50 years ago, Dr. Neuman was an intern at a Catholic hospital where a child was born with severe malformations. “It had a single fused eye in the middle of its forehead,” he writes. “The irises pointed to the sides. There seemed to be four lids surrounding the eye like a box. It was blind, of course. A large part of the brain and head were missing. There was no nose…The baby’s esophagus and trachea had not separated, so that feeding the child was impossible…Also, the child had extra fingers.”

Dr. Neuman describes the child as “unworldly,” “alien” and not looking like a human being. He says the obstetrician who delivered the baby called it a “monster” – a medical term, Dr. Neuman says, for a grossly misshapen baby.

The obstetrician told the parents the baby had died, to protect them, we learn, and Dr. Neuman feels this was the ethical thing to do. Further, the baby was left to die, unfed, and this caused great anxiety on the unit because the baby did not die quickly. “Because it did not look like a human being, most of the time no one was disturbed by it…” Dr. Neuman writes. Until it cried. “Then it sounded like any other baby. It was hungry, and it could not be fed. Picking it up would not stop the crying.”

Dr. Neuman is asked by a resident to remove the child’s extra fingers for no medical reason but as a “learning experience.” But when Dr. Neuman ties a ligature around the baby’s finger and pulls tightly, it screams. “The kid was in pain,” he writes. “I should have realized that, but somehow I did not. It was because the baby did not really look like a baby...” He puts the baby down and retreats.

The rest of the article details his overwhelming urge to smother the baby because it’s causing such angst among staff on the ward. He says that another obstetrician might have smothered the baby before anyone had a chance to see it. “Such things happen,” he tells us. The baby ends up dying before Dr. Neuman has a chance to see if he has the nerve to put his hand over its mouth. And all these years later he says: “I still think now, that the right thing to do would have been to kill that baby. It wasn’t really a baby; it just sounded like a baby…”

When you think of the hate crime that has been perpetrated against people who are different – who are disabled, gay, the wrong race or religion, poor – doesn’t the rationale usually come down to some version of: “It wasn’t really a (human)?” Throughout Dr. Neuman’s piece, we never learn whether the baby was a girl or a boy because he refers to it only as “it.”

That baby deserved to be held by its parents, the people most invested in its life, to be treated with respect and to not suffer pain.

In another case that reflects societal attitudes about the worth of people with disabilities, a man with autism is being denied a heart transplant in Pennsylvania: Should autism block a man from getting a heart transplant?

It's a complicated case, but it's not hard to see how cultural values and physician attitudes about what constitutes quality of life trickle down into these decisions.

An interesting 2006 journal article crossed my desk about 94 obstetrical and pediatric professionals in a hospital in France who were surveyed about euthanasia. All indicated they would agree to have their own newborn child's life actively terminated through euthanasia for conditions including Down syndrome, intellectual disability or lack of one arm or leg, among other disabilities. One doctor wrote on the survey: "no handicapés are allowed."

And here, a mother writes about learning her teenager with autism was beaten up by a non-disabled peer on the job – at the Department of Disability Services of all places, in the District of Columbia: Eyes wide open.

And that headline sums it up beautifully: Let's open our eyes.

Let’s take a closer look at the monsters that lurk in the recesses of our thinking – the cultural relics of fear and stigma and hate that none of us is immune to.

Tuesday, August 14, 2012

Tell your own story















A research project at Guelph University in Ontario helps women write their own storyline about what it means to have a disability.

In a three-day workshop called Project Revision, female participants aged 20 to 70 collect footage, music and still photos. They write out the story of their own disability, then edit everything together into a three-minute video. Along the way, they receive constant instruction, guidance and technical support.

At the project’s end, the videos are shared with health-care professionals. Eventually, the researchers hope to share them with the public.

Researcher Eliza Chandler (photo above) created her own digital story when Project Revision began. In her work, Eliza, who has cerebral palsy, portrayed the initial anxiety and shame – and eventual pride – she felt about her disability while attending university.

She says creating a story helped her to express ideas and feelings that she wouldn’t typically have been willing to discuss.

That’s why she believes that digital storytelling can be useful not just to adults, but to children with disabilities and their families.

“As a child growing up, disability wasn’t something I talked about with my family,” Eliza says. “It was obvious it was there, and we dealt with it, but we didn’t really talk about it. If I were to have experienced something like this with my parents when I was a child, I think it would have been really useful and helpful to open up tough conversations.”

Digital story making can also be an effective outlet for children who don’t have a strong command on language. They may be better able to access and share their feelings through pictures or music or tone of voice, Eliza says. And kids are often tech-savvy.

Creating a video about disability may be useful for parents and children.

“Everybody can make a video, and I really do mean that…” Eliza says. “The end product is accessible to a lot of people. Most people can find some sort of entry point into the digital stories.”

Eliza feels the process of digital story-making is an opportunity to alter common depictions of disability.

Too often people with disabilities are portrayed in the media as being pitiful, sick, shameful or regrettable. However, given the chance to represent themselves, Eliza says a different picture emerges.

So far, many participants have framed their disabilities as being "generative" – as adding something to their lives rather than taking away. While the women involved have not always shown pride in their disabilities, Eliza says they have presented them as a catalyst for new and positive things – like an improved perspective or a new relationship.

The stories are truthful and multi-dimensional, a necessary foil to the conventional depictions that are currently so pervasive.

“With a real story, [participants] are able to represent the lived experience, which is much more nuanced than a straightforward stereotype,” Eliza explains.

“It’s not a as though someone’s making an argument you can counter. It’s their truth. That’s really powerful, I think. And really necessary because these are stories that aren’t usually represented.”

Story by Megan Jones

Friday, August 10, 2012

Wanted: Shoes you don't have to tie












A Florida teen with cerebral palsy is asking Nike CEO Mark Parker to design a line of shoes you don't have to tie.

Nice Kicks, a shoe blog by Matt Halfhill, has promised that for every retweet of this video marked with the hashtag #NIKELETTER, they'll send a postcard to Nike’s CEO in support of the idea: http://youtu.be/L5YG6a1-LNY

Matthew Walzer, 16, who wears Nike basketball shoes for ankle support, writes:

"If Nike would design and produce basketball and running shoes with moderate support and some kind of closure system that could be used by everyone, Nike could create a shoe line that attracts people that face the same physical challenges I did and still do, yet it could still be possible for anyone to wear them."

That kind of shoe would be perfect for my son Ben, and I'm sure for many other kids and adults with hand problems -- as well as for on-the-go folks who don't feel like taking the time to bend down and tie two shoelaces.

Let's get tweeting! Louise

**Please read this update from Matthew Walzer

Wednesday, August 8, 2012

The House of Gort



You MUST watch this video of one of my favourite families -- the Gorts! Tim and Gina Gort of Marquette, Mich. have three daughters, two of whom have cerebral palsy. Gwen, middle, was born with her disability, while Eliza, left in Tim's arms, was born healthy but suffered a brain injury as a result of a medical accident. Seated with Gina is Violet. You may remember these interviews we did with Tim and Gina: 'You took the decision away from us' and Respite: 'It needs to be a way of life.' Trust me, you will never meet another family like this. I love them and respect them! Louise

Girl with mental disability to receive transplant after all

A child who was disqualified from a kidney transplant because of her intellectual disability will receive the procedure, with her mother acting as donor, according to the blog Babble.

Chrissy Rivera, mom to Amelia Rivera, 4 (left), writes that her daughter has been approved for the surgery. Earlier this year, over 50,000 people signed a petition at change.org asking the Children's Hospital of Philadelphia to reconsider its decision to deny Amelia a transplant.

Tuesday, August 7, 2012

When ready, you reach out


Lies Ferriman was thrust into the world of rehabilitation six years ago when her son Sasha had a snowboarding accident and sustained a brain injury. In this BLOOM video clip, Lies shares her family’s story and her advice for other parents who are coping with a child’s disability following trauma. Lies is a family mentor in Holland Bloorview’s family resource centre.

Friday, August 3, 2012

Who decides what's beautiful?
















This adorable little tot is the face of a new advertising campaign by Spanish swimwear designer Dolores Cortés according to Adweek. "People with Down syndrome are just as beautiful and deserve the same opportunities," Cortés is quoted as saying.

Amen. This was a bold step in a business that typically renders children and adults with disabilities invisible. How often do you see children with disabilities featured in ads or mainstream media? What about parenting magazines? And not as part of a 'niche' story about a particular type of disability, but as part of the broad 'landscape' of childhood, which, in reality, they are?

A couple of weeks ago I flew in to Toronto's International Airport and walked under a massive billboard featuring children from diverse cultures. The creators must have gone to great lengths to ensure this rich representation. But no child with disability was included. Why?

Turning Valentina (above) into a swimwear model proclaims loudly and clearly that children with differences are here, they're gorgeous, and they're valued. Disability is normal.

"Representation in media is a form of acknowledgement by society," disabled British model Shannon Murray writes in The Independent. "...Consider Cherylee Houston’s character, Izzy, in Coronation Street or Cerrie Burnell presenting on CBBC. Both received press attention because of their difference, but now that is barely mentioned, they are simply accepted by viewers as performers on television like their able bodied colleagues. I welcome the day when we might have a kick-ass Disney heroine who just happens to have a disability so disabled children can see representation from a young age."

I'd like to see a Disney heroine with an intellectual disability.

On an oddly related note, a friend posted a link to this San Francisco Chronicle story about a New York charity that offers free plastic surgery to typical children who have been bullied because of their appearance. No, you didn't read that wrong! Featured in a CNN video included with the online piece is Nadia, a typical 14-year-old girl who was bullied for her protruding ears. The Little Baby Face Foundation covered a $40,000US procedure to have Nadia's ears pinned back. But they didn't stop there. The surgeon who saw Nadia decided her nose and her chin needed some work too.

Some of you remember my blog about an otoplasty my son Ben had that wasn't successful. To be fair to Little Baby Face, the stated objective on their website is to offer free plastic surgery to children with craniofacial 'deformities' like my son -- not to those who are teased for typical features.

However, the idea that a solution to bullying for a girl like Nadia is to change her appearance -- rather than the perpetrators' behaviour -- reminded me of a trend in the 1990s to 'normalize' children with Down syndrome through plastic surgery. It wasn't uncommon then for children with Down syndrome to undergo procedures that included shortening the tongue, removing skin folds from the eyelids and pinning the ears.

And this is how the Little Baby Face plastic surgery story circles back to little Valentina's ad campaign above.

French research* published in April this year showed that adults evaluating photos of children with and without Down syndrome were more likely to rate children with Down syndrome less favourably if they had features 'highly distinctive' of the disorder. This would seem to suggest that children with Down syndrome whose features have been 'muted' through surgery will be better accepted socially.

Of course that's not a reason to do the surgery!

The same French researchers also had adults do implicit-association tests, which capture the strength with which certain groups of people are automatically, without conscious awareness, associated with positive or negative attributes.

They found that at this unconscious level, photos of children with Down syndrome were automatically associated with a negative trait, even by people who had openly rated the photos positively. "People may not have access to some of their thinking which is not conscious," said study researcher Claire Enea-Drapeau. Even when people are outwardly accepting of children with Down syndrome, negative "implicit associations may persist, proving that these associations can be retrieved from memory. These are the result of social attitudes and values carried by our cultural environment. As long as we don't know about them...we are trapped in automatic attitudes or associations. But when you are aware of it, then you can start to struggle."

Rather than excluding children with disabilities from media images -- or trying to make them more 'normal' through surgery -- and staying trapped in archaic stereotypes, I'd like to see kids with disabilities represented in popular culture so that we can begin 'the struggle' Enea-Drapeau speaks of. "If we know we are carrying implicit stereotypes, then we can choose to try to change them," Enea-Drapeau said.

Instead of expensive, painful surgical procedures I'd like to see investment in research on how to uncover and change hidden stereotypes.

*Enea-Drapeau C, Carlier M, Huguet P (2012) Tracking Subtle Stereotypes of Children with Trisomy 21: From Facial-Feature-Based to Implicit Stereotyping. PLoS ONE 7(4): e34369. doi:10.1371/journal.pone.0034369

Wednesday, August 1, 2012

L'Arche's lesson: Pay attention






















Bénédicte Millet is a small, spritely, silver-haired dynamo.

Though it was the end of a long, busy day at L'Arche in Trosly, France she sat with me, listened attentively to my questions, and gave careful thought to her responses. She looked me in the eye and made me feel that what I had to say mattered.

Bénédicte works with a team of staff who support volunteers who come from across Europe to work at L'Arche -- a community that brings together adults with intellectual disabilities and young adult volunteers.

During our interview an older resident came to meet with Bénédicte. I assumed they had a prior appointment. Instead of ending our conversation, Bénédicte introduced us and explained I was from Canada. She treated this gentleman with great respect. "Bravo, Canada!" the man exclaimed. He then sat patiently while we finished talking.

Bénédicte first heard about L'Arche over 20 years ago when she was working as a speech therapist. "I was in Palestine working with deaf children and I met Jean Vanier who was there with a group from L'Arche on a pilgrimage," she said. "I was interested in how they related to each other. I felt they had very deep relationships. I came here to see and I've been here for 21 years. It's changed my way of life."

Before L'Arche, Bénédicte says she had always lived in her head -- "organizing, reflecting. I had lots of ideas, but I feel I was far from a human life. I was far away from a lot of people."

The message to change her life came from a L'Arche resident.

"I was still running a lot," she recalled. "To clean, to go to the supermarket, working, working, working. And one day a handicapped man in the home took my hand and told me: 'Now, you come and you sit here and you stay here.' And I did.

"I understood how this was a deep message for me to change my life and to pay more attention. In fact, I realize that (people with disabilities) have taught me to be really present. I see how I am different now. How I can be much closer to people. How my life is more interesting and more lively."