What New York Magazine got wrong about intellectual disability

By Louise Kinross

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

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

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

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

WHOA Nellie!

Halt!

Where on earth did that come from?

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

Lack of empathy is not a marker for intellectual disability.

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

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

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

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

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

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

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

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

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

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

Photo above from New York Magazine. 

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In Lucy Jones' hands, disability and style are a perfect fit

By Louise Kinross

Lucy Jones, 24, is described as one of the world’s brightest entrepreneurs by Forbes Magazine. Forbes named her to its 2016 30 Under 30 list for her work designing clothes for people who use wheelchairs: "Her modular pieces incorporate features like added fabric on kneecaps and elbows, zippers that run the length of the arm, and snaps and magnets that make dressing easier," Forbes says.

Lucy, originally from Wales, now works in New York City for designer Eileen Fisher and Runway of Dreams, a not-for-profit that's pushing mainstream labels to produce adapted versions of clothes for kids with disabilities. You may remember our story on designer Mindy Scheier, the mom who founded Runway of Dreams when her son Oliver couldn’t pull jeans over his leg braces. BLOOM spoke to Lucy about her clothing collection Seated Design, which she developed as a graduate student at the Parsons School of Design in New York.

BLOOM: I read an interview where you talked about how clothes express identity. What does that mean for people with disabilities who often can’t wear mainstream clothes?

Lucy Jones: Everyone should have the right to express themselves. Say I’m wearing trousers that have some sort of detail on the pocket. If I sit down, the detail doesn’t work in the seated posture. That’s a shame that detail doesn’t apply to someone who uses a wheelchair. They should have the same rights of expression.

BLOOM: My son isn’t able to fit standard sizes, and it seems that people with disabilities often have to choose function over style. They have to choose clothes that accommodate their differences, but aren’t necessarily the clothes they want to wear.

Lucy Jones: If you’re a great designer you should know how function and design go hand in hand. That needs to be drummed into designer’s heads. Function can determine style, and each should inform each other.

The biggest thing when I come up with a new function is I say ‘Is this stylish? Is this desirable? Would I wear it? Would my friend wear it? If I’m seated, do I feel great and comfortable and attractive?' When designing, we should be asking questions about how it looks in all different positions, and how it functions if you only have the use of one hand or you’re an amputee. We shouldn’t be designing based on how something looks on a hanger.

BLOOM: I understand your cousin Jake, who has hemiplegia, is the inspiration for your work?

Lucy Jones: Yes, he gave me the idea. He rang me up about four years ago and I asked him how his day was. He said it was really bad and the little things in life really get him down—like doing up his jeans because of the fly front and zipper. He dresses with one hand. So for Jake it's a chore. 

I remember thinking ‘I’ve never talked to him about that.’ I’d always seen him manage and he has the best attitude. I hadn’t considered it. The solution seemed so simple to me and I was appalled that there wasn’t anything out there for him. I took the idea back to my professors. I told them ‘Now I feel I shouldn’t be designing unless I’m designing for the right reasons.’

BLOOM: What are some of the ways that off-the-shelf clothes don’t work well for people who use wheelchairs or who have other physical disabilities or weaknesses?

Lucy Jones: A did a lot of focus groups and learned about things I hadn’t thought of. For example, the weight of clothes if you have trouble with balance or if one side of your body [is paralyzed]. Coats are super heavy. It’s very hard in standard clothing to maneuver your body into arm holes and zippers, especially if you can’t see them.

With many clothes, wearing them in a seated position is uncomfortable and not a good fit. If you’re seated, your jeans will fall in the back, because your fat and muscle spread. Your thighs expand, your kneecaps are bent and fabric gathers in the back which is uncomfortable.

Buttons are real challenges. Collars are an issue. If you’re self-propelling in a wheelchair your neck and muscles are far stronger, so you’re going to have more muscle bulk. So standard collar sizes won’t suit a standard top anymore. You’re going to end up needing a larger collar with a size small. These are things that have to be looked at.

BLOOM: How did you find models to work from?

Lucy Jones: That was really easy. I sent a mass email on Craigslist and posted on Yahoo classifieds and contacted organizations. I couldn’t believe the response I had back from people saying 'I'd love to work with you.' I did focus groups. One of my main models is Ronnie. I love her energy.

She has multiple sclerosis and she’s really struggled with clothing. She grew up wearing a standard size, then she began using a manual wheelchair and then moved to an electric chair. It was so interesting to see all of the alterations she had done by seamstresses so that clothes would fall better and feel more comfortable as her body changed. Ronnie can't independently dress. I was dressing her and I noticed how difficult clothes are for a caregiver dressing someone.

BLOOM: What is different about your designs for people using wheelchairs?

Lucy Jones: The main difference is the entry point into garments. I know elbows are an issue if you don't dress independently. It's uncomfortable when caregivers pull limbs through armholes. I found ways to open up the back seaming to expand the space to provide for comfort. Then it would draw with a string back into a tie or bow that is much more appealing.

I completely altered the anatomy of the sleeve (see photos below). I add way more fabric and padding around the elbow. That way if you're resting, your arms can lay more comfortably. If you're self-propelling, you have the amount of pull in the elbow you need, so it doesn't put pressure on the fabric. I did the same to the kneecaps: I took away all of the gathering at the back of the knee crease.

The other functionality I added is zipping. I realized when I was pulling Ronnie's arm through a sleeve how difficult it is to get a sleeve over the elbow. It's like putting your foot through a sock. Ronnie wanted to wear shirts. Shirts are everywhere in everyday society. She's a business woman and she wanted to look formal. So I did the shirt so that the whole arm can be zipped up in the sleeve. You put the arm through the armhole and lift the sleeve around the arm and zip it up, like you were putting a banana back together.

BLOOM: There are some designers who make clothes for people with disabilities but I've heard they can be quite expensive.

Lucy Jones: We want clothes that can be affordable. Because this project was a school thesis, I was allowed to think big and not think about the cost. A lot of my functions would not be cheap to produce and manufacture. But other things, like the sleeves that open with zippers, are easy and really cheap.

I would never want to make a separate line or category of clothes, because I think everyone should go and shop where they want to shop. It should be mainstream. That's why I'm working with Runway of Dreams. They're going to be having a huge launch with a major brand in March to adapt existing clothing. So it's the exact same line, the exact same clothes, with the adaptations built in.

BLOOM: What sizes?

Lucy Jones: It's kidswear but the sizing runs up to adults.

BLOOM: What is your role with Runway of Dreams?

Lucy Jones: I'm working with Mindy to launch a new campaign for diverse individuals who use wheelchairs or crutches or who are amputees. It's so diverse and obviously the alterations need to reflect that. It's problem-solving. It's knowing you can make someone's day easier and make them feel included.

BLOOM: Do you also do other work?

Lucy Jones: I won a nation-wide competition and am working with Eileen Fisher on a one-year residency as a social innovator. I'm working with two other girls to design solutions for all of the damaged garments that customers have brought back that we don't want to put in a landfill. There are heaps and heaps of damaged garments.

BLOOM: Wow! Amazing. How does it make you feel to know that Forbes has named you as a top entrepreneur?

Lucy Jones: I think this is showing that there are steps toward inclusivity in design. The fact that people nominated me and the design judges thought it was a great idea for the fashion industry. It makes me proud to know we're moving in the right direction.

BLOOM: Sometimes I feel cynical about people in fashion wanting to see more inclusion, or even understanding why it's important. It seems that how we define beauty is becoming more and more narrow.

Lucy Jones: What I have seen, and what I do think is so positive, is this collaboration by Runway of Dreams with the major brand I was talking about. We had an event with kids with disabilities modelling the new clothes and having the best day ever. Most of the parents were in tears because they said this is crazy to have our kids wearing the same brands as the other kids.

Kids with disabilities are singled out in the class and the parents said that to have their kid wearing exactly the same thing was a huge breakthrough. Parents of young kids were choked by the whole thing. One dad said he couldn't express how much it meant to him and his family. The CEO was present and the style team said this was one of the best days they've had at work. It totally shook them to see how happy the parents and kids were.

BLOOM: I imagine that experience made them feel like they were respected and valued. It said something about how they were viewed.

Lucy Jones: Even though it was positive, it was almost like, why should they have to live with that? Why hasn't this already been done at a high level of design?

BLOOM: I know parents who spend an unbelievable amount having mainstream clothes tailored, but sometimes they still don't end up looking right.

Lucy Jones: We want adaptations already in the garment. This is design for humanity. This is just one collaboration. The idea is to tackle loads of brands and if we can have the same experiences with many brands, I think we're going to make waves. I get shivers thinking about it.

BLOOM: You said your project at Parsons explored the relationship between disability and beauty. But disability doesn't usually fit into conventional ideas about beauty.

Lucy Jones: I think there is a way to change perceptions. There's no simple answer to that, it's just great design. We've been informed as a society that when people look or walk differently it's a bad thing. It's not, it's just adjusting your eye.

There's a famous furniture designer that I love, Charles Eames. He made a leg splint that I thought was a wall piece. I thought it was an ornament because it was so beautiful. That's really smart. I want to see hearing aids with Beats. There's no reason why walking canes can't be 3-D printed. When you have a wheelchair it doesn't have to look bulky and thermoplastic. You can redesign it to be whatever the person wants, whatever makes them feel themselves. Great designers know how to do it.

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This sister is solid gold

By Louise Kinross

Kaya Cosgrove, 10, wears metallic pink Doc Martins, loves the vampire romance series Twilight, and wants to be a labour and delivery nurse. She’s also sister to two brothers with autism—Liam, who is 12, and Phoenix, who is 2. Kaya’s mom Susan is raising the children on her own, so Kaya is a big support to her family. BLOOM asked Kaya about her experiences as a sibling.

BLOOM: What’s it like to have two brothers with autism?

Kaya Cosgrove: As the middle child, sometimes it’s hard because my older brother gets to do stuff I don’t get to do, and my little brother gets a little bit more attention because he’s really cute and a baby.

BLOOM: When your older brother gets to do things you can’t, is that because he’s older, or because he has a disability?

Kaya Cosgrove: A little bit of both. Think of it as a brother and sister and one has all the diamonds in the world, and one has all the gold in the world. Think of how that would make the person with all of the gold feel.

BLOOM: Do you mean that diamonds are more precious than gold?

Kaya Cosgrove: Not more valued or precious. Just that they get a little bit more attention.

BLOOM: Interesting! How would you describe autism?

Kaya Cosgrove: It’s having an older brother or sister that acts different from your friends and can also be sometimes very angry. And sometimes can cry.

BLOOM: You probably also see another side to your older brother that your friends might not, because you know him so well.

Kaya Cosgrove: Yes. He can be very sweet and very, very, very funny.

BLOOM: I know you are part of the Young Carers Program. In what way are you a caregiver to your brothers?

Kaya Cosgrove: I help my little brother with keeping him busy and safe when my mom does stuff. And if my older brother Liam has lost something, I help him find it. When we’re in public I help keep an eye on them.

If we’re at home and I see Liam is getting upset—we call it a meltdown mode—I would go tell my mom. She’ll tell him to calm down and do his deep breathing.

When they both start getting mad at the same time, it’s hard to calm both of them down at the same time. We have to decide who’s having the bigger meltdown.

In public, Liam is terrified of strangers—if a stranger talks to him or touches him. Once at a movie a stranger started talking to him and I said: ‘Excuse me sir. Please don’t talk to my brother. He’s autistic and he doesn’t like strangers talking to him.’

BLOOM: How did you learn to speak up like that?

Kaya Cosgrove: Just from experience. I feel bad for my brother being terrified of strangers. And I feel bad for not helping him, so I just learned.

BLOOM: I’m sure that in addition to hard things, there are amazing things that you love about your brothers.

Kaya Cosgrove: Yes. My older brother Liam can memorize stuff like movie dates and codes. It’s amazing. And my little brother Phoenix can count up to 189 and he’s only 2. And Phoenix can read the whole alphabet and read books too.

BLOOM: What are your favourite things to do with your brothers?

Kaya Cosgrove: With my older brother we like to play cards together. And with my little brother we like to play soccer. One of us will throw the ball and the other one will go and get it and sometimes he kicks it.

BLOOM: What advice would you give to parents who want to make sure that their children without disabilities are happy?

Kaya Cosgrove: Always make sure that the sibling is not jealous. So, for example, you could say: ‘Oh, are you okay about it if Liam gets a new computer?’ Liam’s iPad got smashed by a bully at school.

I get a little bit jealous when my older brother gets ToysRUs gift cards for the things he does with researchers. Maybe if he gets a gift card, we could split it up sometimes?

Make sure you have a very strong relationship with your child who doesn’t have a disability. If they want to do something just with you, try to set a specific date so your child has something to wait for that’s exciting. Try to find the time.

If you’re taking your special-needs kid somewhere, make sure that the kid with no special needs doesn’t want to go on a different day. Maybe they don’t want to go with their brother with special needs.

One time at the Exhibition my brother had a freakout and I didn’t have the courage to say: ‘I really wanted to come here, but only me and you Mommy.’ The child may want a trip to be just the two of you.

Sometimes the sibling really wants to come along to their brother’s therapy. I’ve gone to my little brother’s therapy and I was really excited. I like to see what they do. Because both of my brothers have autism I like to study things about medicine and I know a lot about medical things. I’ve always wanted to become a labour and delivery nurse.

BLOOM: What is the Young Carers Program?

Kaya Cosgrove: We meet with lots of kids who have the same experience. It’s for a child or youth who acts in a caregiving role at home. We talk about our feelings about our family and we sometimes do special events. We had a campfire where we got to show off our talents and my friend danced and I sung. We can share experiences and talk about ways to help your siblings. Sometimes we talk about ways to calm down when they’re getting more attention than you. We also did role-playing to learn how to stick up for your sibling if they’re being teased.

BLOOM: I guess the kids at the Young Carers Program understand in a way that some kids at your school wouldn’t.

Kaya Cosgrove: Having brothers with autism makes my life very different than my friends and many of my classmates. In my old school, this one girl would tease me about it, saying ‘My brother is all perfect.’

I read a book to my class about a girl who learns her brother has autism.

Every year I get the same question: ‘If he falls off a skateboard, would all the autism be cured?’ I have to tell them ‘There is no cure for autism now.’ Another kid asked what happens if you’re in public and your brother runs away?

BLOOM: It must be frustrating when you’re out and people see your brothers do something different but they don’t understand why.

Kaya Cosgrove: One of our therapists suggested we put a sign on my little brother’s stroller that says ‘Autistic child. Please don’t touch me and thank you for understanding.’

BLOOM: What is your relationship with your mom like?

Kaya Cosgrove: We have a very, very strong relationship. We always like to go on outings together and we always talk with each other. We watch TV together too.

A big part of our life is that my parents are divorced. My grandmother is a ‘gi-normous’ part of our family. We live down the street from her. She understands Phoenix and Liam really well. If they’re having a bad day she helps them, and she always helps me with my math homework. She has a very important role.

BLOOM: Is there anything else that might be useful to our parent readers?

Kaya Cosgrove: It can be hard for us to do things together as a family and I never thought I would get to go somewhere like Disneyworld.

BLOOM: Right, you got to go on a one-day trip to Disneyworld through Dreams Take Flight?

Kaya Cosgrove: Yes, I got chosen with three of my best friends from the Carers Program. We got a medal for being a young carer. We got to be on City's Breakfast TV with Jennifer Valentyne. That was my favourite part. And we got to take a fancy limousine to the airport. My favourite ride was Space Mountain.

BLOOM: So even though there are challenges about having a brother or sister with a disability, there are also good things. What would you suggest for another kid who maybe doesn’t understand that much about their brother’s or sister’s autism yet?

Kaya Cosgrove: Try to find them a book that describes a bit about autism or give some suggested autism sites like autismspeaks.org. I read a book to my class about a girl who learns her brother has autism.

I mostly learned about autism from my mom and my grandma too, and also from looking at my brother and seeing how he’s different from me.

Tell your child if they ever have feelings about their brother’s special needs that they can talk to you and you will never judge them. Tell them to never be afraid to talk to a parent, teacher, friend or counsellor. Anyone they feel safe with.

BLOOM: Is there anything you do, like writing a journal, or exercise, that helps you deal with stress?

Kaya Cosgrove: I’ve always wanted to write little notes when I get angry, then rip them up and put them in a box and the next time we go to a cottage, burn them. To get the stress out. I also have a fidget toy I play with a lot and stress balls help too.

Kaya Cosgrove is a member of Holland Bloorview's children's advisory. Her mom Susan is a family leader and member of the Research Family Engagement Committee. Kaya, below with Liam (left) and Phoenix (centre), is speaking about her caring role at an upcoming Dreams Take Flight gala. Check out the Young Carers Program.

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BBC Ouch: Brothers, sisters and disability

By Louise Kinross

BBC Ouch is a fabulous British blog and podcast dedicated to telling the stories of people with disabilities.

I'm listening to this almost hour-long discussion among people with disabilities and their siblings of a variety of ages. Also interviewed are a mom and her younger children, one of whom has cerebral palsy, autism and vision loss. Interesting chat about sibling issues in families raising kids with disabilities.

BBC Ouch has rich content and is a great site to follow. Check it out!

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This bereaved mom lives with no regrets

By Louise Kinross

When her son Jordan was 10 days old, doctors told Cheryl Runstedler he was going to die. Jordan was born at 24 weeks weighing one-and-a-half pounds with many disabilities and medical problems.

Instead, “I had him for five years,” Cheryl says, and until his death last September, she and her husband Joe filled his life with fun. “I have over 100 videos of him and thousands of photos. In March before he passed away he was granted a Sunshine Foundation wish and we went to Disney with him. And the week before he passed we took him to the CNE and he went on the Ferris wheel. We were all about him loving his life and having fun.”

BLOOM spoke to Cheryl about how she approached life knowing that Jordan would likely die young.

BLOOM: Tell us a bit about Jordan.

Cheryl Runstedler: He was in hospital for five and a half months and had multiple surgeries. He had a brain injury at day three. At three months he was diagnosed with profound hearing loss and he had cortical visual impairment, which affects the processing part of vision. At seven months he was diagnosed with cerebral palsy. He came home on oxygen and had a lot of metabolic issues that required medication and monitoring. I used to say that [cerebral palsy] was the easy part. We knew we were going to have a special-needs child and we just wanted him to live.

BLOOM: What was most challenging?

Cheryl Runstedler: It was dealing with other people, the doctors especially initially. Trying to get them to understand him and not underestimate him and not just assume he’s not worth it. The medical profession looks at everything needing to be perfect. I used to tell doctors everyone has a disability, some are just more visible. I didn’t want Jordan to feel like he was broken or that we were disappointed. We felt blessed to have him.

Early on I got rid of any negativity around me—any doctors, nurses or therapists who were negative. I surrounded myself with a core of doctors—the complex-care doctors at SickKids and a neurologist—who knew and saw him as a little boy. Then when he became an inpatient, I could call on those doctors.

BLOOM: What kind of things did Jordan enjoy?

Cheryl Runstedler: He loved to play. My husband would do wrestling moves with him on the bed and he loved that. He liked the sandbox and swings at the park. We took him everywhere. We went to the grocery store and they played loud music and I’d dance with Jordan in the aisles.

Once he had his cochlear implant and could hear, he was quite fussy about watching cartoons. He played with our neighbours—they have a two- and three-year-old and we’d bring him over to their house. We did lots of neighbourhood and city stuff. He was very smart and very particular and stubborn and also mischievous. He had a huge pouty face and a googly little grin.

BLOOM:  Was he accepted in the community?

Cheryl Runstedler: We got a very thick skin in the beginning. When he got hearing aids I made a point of getting molds that were the most colourful things you’d ever seen. I thought if people are going to stare, I want them to stare at fun stuff.

BLOOM:  How did you approach therapy?

Cheryl Runstedler:  I told therapists that if I can’t incorporate this into our day-to-day life, and in fun and play, I’m not going to do it. They’d look at me with shock. I got rid of a couple of them. One said Jordan was lazy. I said ‘No, he’s not lazy, he has severe low muscle tone.’ 

I wasn’t trying to fix him. He had a brain injury and I wanted him to enjoy his life. That was more important to me than therapy. 

When Jordan was a baby I went to hear one of your BLOOM speakers. And there was a young woman there, Crystal, who said that when she was young, she didn’t know swimming was for fun. She thought it was just therapy. It broke my heart, because I didn’t want Jordan to ever feel that way. That was one of my turning points. When you’ve almost lost your child, it changes your focus.

BLOOM: I heard that you had lots of fun with Halloween.

Cheryl Runstedler: We dressed him up in the NICU as a Chippendale dancer. He was naked with a diaper and a bow-tie. He missed two Halloweens because he was at SickKids, but the year before he died he was a pirate. I painted a beard on his face and he wore dreadlocks and nail polish. This year I wanted to make him a bobble head, because he has no head control. We made fun with the situation, because that’s the kind of people we are.

BLOOM: What advice would you give other parents?

Cheryl Runstedler: For me, I just loved my kid and I didn’t care what people thought of him. I didn’t care about the stares. I didn’t get offended because I took everything with a grain of salt. Life is not perfect. I grew up on a farm. I had a simple upbringing and my parents instilled in me that each day is a blessing. We don’t know how long we have. 

Before I had Jordan, I’d had a number of miscarriages. It took four-and-a-half years to get him. I was on upside-down bed rest when I was pregnant, and it was a huge struggle to have him make it. Nobody chooses this life but it was the life we were given, so we had to make the most of it.  

Life was good and every night my husband and I would turn to each other and say: 'We’re so blessed to have him.' Even now, as I’m going through the [worst] part of raising a child—having a child pass—I tell myself 'We could have only had him for 10 days, and I had him for five years.' I have so many life memories of things we did together and these are the things I cherish now.

Jordan with a "mini-me" made by Feel Better Friends  

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Parents of disabled kids can least afford hospital parking fees

By Louise Kinross

Wow! In Scotland patients and families don't pay for hospital parking. According to this fascinating article in the Ottawa Citizen, officials there said it went against the concept of universal access to health care.

In Ontario, Health Minister Eric Hoskins has frozen rates for hospitals that charge more than $10 a day, and called for multi-day passes that discount rates by 50 per cent. 

How do the Scottish hospitals replace the revenues hospitals in Ontario rely on from parking? The Ottawa Citizen article doesn't provide the answer. 

It does say that The Ottawa Hospital raised over $18 million in parking fees, with a net revenue of over $12 million, in 2014-15. This money is used to buy medical equipment and improve patient-care environments, a hospital spokesperson said. According to this article, parking generates about $100 million for Ontario hospitals each year. It's hard to imagine where that kind of money could be found.

Asking parents about their experiences with hospital parking on the BLOOM and Three To Be Facebook pages yielded numerous responses: 

One mom spent $1,100 in parking fees when her daughter was in the neonatal intensive care unit (NICU) for five weeks. 

"I'm afraid to add it up," writes another mom. "My son was in hospital for five months, I went everyday and paid $20 a day. We were in survival mode so we didn't really think about it." 

That would be over $3,000.

Another mom notes that a social worker told her about extended-stay rates that are cheaper, but other families may not be aware of this option.

Another mom says she was spending "upwards of $25 a day" when her daughter was in the NICU seven years ago.

Families already face exorbitant extra costs to support a child with a disability. For example, in this recent Today's Parent article, an Ontario parent spends between $10,000 and $20,000 a year on her son's expensive equipment and specialized camps. 

Many families raising kids with disabilities require one parent to leave the workforce and stay home to "manage" their child's care, substantially reducing their income.

The Ottawa Citizen article notes that parking, eating at the hospital and other expenses can consume up to one-third of a family's after-tax income when a child has prolonged stays due to cancer.

That adds up to a whole lot of financial stress and worry on top of whatever medical problem your child is facing and the juggling of trying to care for siblings who are left at home.

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'My visits are seldom welcome:' Life as a geneticist

A few years ago we ran a post called 'Everytime I see her I feel guilt.' It was about an article in the American Journal of Medical Genetics by Dr. Malgorzata (Margaret) Nowaczyk, a pediatrician and clinical geneticist at McMaster University in Hamilton, Ont. In the article, Margaret said: "Doctors write stories to give voice to the human element of the illness story that modern medicine has taught them to ignore. Doctors' stories can be as powerful as patients' stories, but doctors rarely allow themselves to tell them." BLOOM asked Margaret to share 10 things she knows about being a clinical geneticist.

By Dr. Malgorzata Nowaczyk

1. I never tell patients what to do, even when they ask, but I always support the decision they make, no matter how different it is from my beliefs and experiences. Prenatal diagnosis is the most difficult for me because here you really do deal with life-and-death decisions. Some decisions mean that a life will not happen.

2. In genetics there’s never one patient. When a diagnosis is made, it frequently affects the patient’s whole biological family in ways unforeseen. Patients require a lot of education. Sometimes they don’t want to share their genetic results with family members, and this puts the physician in a terrible bind. If I shared information with the family members at risk, I would violate patient privacy. I have had situations where a child was born with severe disabilities because a patient chose to withhold information.

3. The field of genetics changes all the time, especially in the last decade.  As a result, most of what we learned in medical school or residency is obsolete—if not just wrong. I am constantly learning—reading or writing articles for medical journals, attending and presenting at conferences and discussing new developments with colleagues and experts. While this is challenging, it’s also intellectually stimulating.

4. People don’t cherish their relationship with geneticists the way they do with other doctors—probably because we aren’t in the business of fixing things. My visits are seldom welcome. I’m often giving news of a serious diagnosis. In 20 years I have received three thank-you cards. Around Christmas time, when my pediatric colleagues carry home baskets full of gifts and cards, I go home empty-handed. That’s why the thanks I do get is so precious.

5. No single geneticist is an expert on all conditions. Almost every day I consult with other geneticists in a network around the globe.  We tend to be very collaborative.

6. Photos help us document clinical features, remember patients and track the progression of a disease. Before images became available on the Internet, it was textbook photos that taught me to recognize a multitude of syndromes. I’m grateful to those patients in the textbooks, although I recognize that often consent was not obtained properly. I understand that having photos taken is sensitive for families. I present them as an option, discuss the pros and cons, and always honour a refusal.  

7. I have seen people at the worst times of their lives and bore witness to the astounding strength of the human spirit. I have also witnessed times when suffering outweighs a patient’s or family’s ability to cope. In these cases, we try our best and then we ask for help from our wonderful and experienced social workers.

8. Clinical genetics is highly specialized. We are not researchers who work in the lab, and we are not genetic counselors. We are doctors. It takes 15 years to become a clinical geneticist: four years of undergraduate work, four years of medical school, five years of residency and another two to three years of fellowship or research. I would say it takes another 10 to 15 years of work in the field to feel truly qualified.

9. Over the years I have paid a high personal and emotional price for work in this field. I started off as a medical student fascinated by the genetic and metabolic puzzles that conditions offered for solving, but with experience I ended up caring a lot more about patients’ stories and journeys than the diseases they have. That has taken a toll. Most of the time I can’t cure the disease, but I feel that I can do something for the patient and his or her family: offer support, understanding of the disease process and acceptance.

10. If I was to start my professional life over again, I would choose genetics, again. In a heartbeat.

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'Have no fear' doesn't apply in advertising

By Louise Kinross

"You've got to see this video," a friend of mine messaged me. "It's for that new song Renegades. I had no idea what it was about and it's so cool."

I pulled the video by X-Ambassadors up (they play the Air Canada Centre this Saturday). 

It leads in with a blind athlete talking about growing up with a disability and how she learns through touch. Then there's footage of a couple of guys navigating their environment outside with white canes, and a handful of guys with canes hiking on the side of a mountain. 

"It's not a matter of enjoying it more or less," one tells us as we watch athletes with amputations wrestling, boxing, working out. There's a guy with amputations of all limbs who crawls along a trail. Other folks just look like your average Joe in a gym. "It's about enjoying it differently. It's enjoying it through a different vision, through another lens."

Whoa. This is not your typical music video. It doesn't include the conventionally beautiful dancers, models or actors you might expect to see.

Later in the video the band emerges from a vehicle and is lead by keyboard player Casey Harris, wearing his signature dark glasses. He's blind and uses a cane.

On The Today Show lead singer Sam Harris, Casey's brother, described Renegades as being "about people who defy the odds, who are unafraid of being different, and it's a celebration of that."

I'd read that Fiat Chrysler used the song in its marketing campaign for the new Jeep Renegade.

I hopped over to the Jeep commercial, eager to see how they were marketing the idea of people who embrace the different or difficult: the renegades, mutineers, underdogs, pioneers, rebels, new kids and outlaws referred to in the song.

I'm not sure which video was produced first, but the commercial one is filled with actors who fit Hollywood notions of beauty and ability. 

I couldn't help feeling it was a tremendous missed opportunity. This article about the commercial in AdWeek doesn't even mention the bold inclusion message of the band's video. 

"Go forth and have no fear" is a line in the Renegades song.

How can we encourage companies to push the envelope when it comes to making people with differences visible in product launches? What about ad agencies?

Here's a still image from the commercial, of what appears to be a professional dancer. Now go back and watch the band's video. Which is the true rebel?

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On a conversation

By Louise Kinross

I was in an unusual situation last night while chatting with a small group of people I didn’t know.

One said she was doing an internship in a day program for adults with mental disabilities. This happened to be a program I had visited and had qualms about.

“What do you think of the program?” I said.

“It’s good. They do painting, and crafts, and games, and talk about the weather.”

The last one, about the weather, didn’t sit well with me, but I had no investment in this conversation and I just wanted to see how she would describe the program.

“But do you think it’s a good program for the participants?” I asked. What I meant was “is this a stimulating, life-enhancing program where the participants are learning skills and knowledge, developing interests and friends and being included in the community?”

“Well, the people who go there all have developmental delay,” she said.

Ugh.

I wasn’t sure how that had anything to do with the quality of the program. But more important, it told me nothing about the people as individuals. I thought about how the average person who didn’t love anyone with a developmental disability might interpret her response: “Oh. They’re different. Something’s wrong with them. Not much can be expected of them. They’re lucky to get anything.”

I wanted to scream about the individuality of each person, which couldn’t be conveyed in the term developmental delay.

The person then told me that the staff only helped the participants when they needed it, which I gathered she felt was an indicator that the program was good. Some were more independent than the others, she said.

“But it’s too bad that they’re separated as a group,” I said.

“It gives them something to do,” she said.

I hate that saying. We all need something to do.

“They go on field trips,” she added. But as a group, I thought.

It was a very odd conversation where I felt like I got a bird’s eye view into how a group of people are reduced to their disability.

There was nothing nasty about the person and I imagine she does her job well.

It just reminded me of how knowing a person as a person differs from knowing them as a label. And how hard it can be to get others to see past the label.

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A son's disability gives this dad a deadline for adventure

By Louise Kinross

Yesterday I heard a fabulous podcast on The New Family, a Canadian blog by Brandie Weikle that shares unique stories about all the different ways a family can come together and live. 

The New Family has dug up some incredible stories that include raising children with disabilities. 

Yesterday's podcast Seizing The Day With Your Family was about one dad's pursuit of world travel when he learned his son's degenerative condition meant he would lose skills over time.

That dad is David Knapp-Fisher of Victoria, B.C. 

When David learned his son Tristan had Duchenne muscular dystrophy, he vowed to take him around the world before Tristan lost the ability to walk, which doctors predicted would happen in five years.

Coming up with the money was no small feat, and included moving with his wife and son into a 400-square foot bachelor apartment to save on rent and eating lots of Kraft dinner.

When Tristan was eight the family had saved enough to go on a month-long whirlwind to Europe, visiting seven countries. One of the most beautiful anecdotes David tells is getting to the Notre Dame Cathedral in Paris and realizing there was no elevator! He carried Tristan, on his shoulders, up 387 steps so he could see the gargoyles at the top. 

Two weeks after returning home, Tristan had a fall and never walked again. 

David says he's made "amazing life experiences" his family's top priority over material things. 

This interview certainly gave me a lot to think about, and act upon.

Learn more about David's story in this Ted Talk. 

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Mapping out the future, with a little help from my friends

By Tina Szymczak

“I’ll never be good enough,” my son Corbin, 12, muttered, over and over again, as he tried to fit his five-foot frame into my lap.

We were about to head out to drop him off at his treatment centre, when he simply fell apart. His despair was overwhelming and heart wrenching. I felt helpless.

Our family was concerned that the treatment centre was using punishment, rather than positive supports, to manage his behaviour, and that this was eroding his self-esteem and escalating his anxiety.

Later that day I shared this story with some good friends at the Windsor Essex Family Network and one suggested it was time to consider doing a “MAP” with Corbin.

MAP stands for Making Action Plans and involves bringing together family and friends at a meeting to help a person plan out their hopes and dreams. It was created by Marsha Forest and others more than 30 years ago.

Inclusion Press describes the process as: “a series of empty container questions that ask a person/organization to tell us some of the milestones on their journey, so we can get to know them, dream with them, and begin to build a plan to move in the direction of their dreams… MAP is about listening to a person's dreams, acknowledging their nightmares, then building a rich portrait of their gifts and talents so we are able to focus on simple daily actions that move them in constructive directions. MAP is a wonderful way to 'get to know' someone, in schools, in communities, in life. It is powerful and requires skilled facilitation by two facilitators.”

So often, as parents, we are told we need to make our kids more independent. It's in their report cards, progress reports and treatment plans. However, what we don't talk about is the concept of interdependence. In All My Life's A Circle, Marsha Forest describes interdependence as "the ability to connect with individuals within one’s own community and develop a network of supports to assist in accomplishing." This is what our son needed—to connect with others in his community.

To be honest, friends had suggested we do this kind of planning numerous times before, but I’d always put it off. I was worried that the people my son chose to invite to the MAP meeting would say no, and he would be crushed. After doing some research, I was able to move past this fear.

I spoke to Corbin about the idea and explained that we would have a meeting and, unlike other meetings, he would have a say in it all. This would be a gathering of his friends and family—all of whom he would choose to invite. He would also choose the snacks and where it was held. He liked the idea that he would be in control.

When we began making his invitation list I was surprised by how seriously he took the task.

The first person to come to Corbin's mind was Joe. My husband and I met Joe and his wife Jenn back in 2001 when we were all hoping to adopt.

Corbin described Joe as someone who is “calm and likes things that I do. I feel good when I'm around him.”

We created the list over several days as Corbin and I thought about people. In the end, he invited about 17. Some were friends from his neighbourhood school. All but two (who were from out of town) were able to make it.

On Sunday, October 31, 2010 we sat in a semi-circle facing large sheets of paper spread across the wall. Two facilitators, who had volunteered their time, encouraged us to talk about words that describe Corbin, to listen deeply to his hopes and dreams, and to help him make plans for the future. This was recorded in colour marker on the sheets of paper, which seemed to make it come to life.

It was extremely powerful to have Corbin put into words things we weren't sure he was aware of: for example, he said that to be successful he needed to be surrounded by people who believe in him and that he needed a quiet place to go to when he was upset so that he could do deep breathing. It was heartbreaking to hear him say that his nightmare was to be locked in a room alone—which, unfortunately, had happened at a treatment centre.

By the end of the meeting people had been assigned “jobs" to help Corbin achieve some of his goals. Lorelei agreed to find a Canada Food Guide chart to assist with Corbin’s desire to eat healthier. Bobby offered to look into gym programs for someone Corbin's age. And everyone agreed to ask around to try to find a guitar teacher who would be good with a spirited pupil.

That meeting changed things for Corbin. He was in a room filled with people who love and accept him for who he is, and want nothing more than to help him succeed in life.

This buoyed Corbin, and us, as his parents. We no longer felt like everything was our job to do. People had readily, eagerly jumped at the chance to have a job, no matter how big or small.

In the ensuing months, we worked to move Corbin to a treatment centre where the focus was on positive behavioural supports and a better understanding of the traumas he had experienced.

Corbin is now 17. We keep in touch with all of the people that came to his original MAP. We have regular meetings once every three months with part of the group to create new short-term goals and come up with new strategies or plans as he grows. A meeting is being scheduled to start planning for his adulthood.        

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A face is only part of the story

Producer and photographer Tanya Workman, right, with Charlene Guenette. Tanya interviewed and took photos of Charlene for The Difference Project.

By Louise Kinross

Tanya Workman produced a fascinating audio documentary called What happened to your face? that aired on CBC Radio’s The Doc Project on Dec. 8.

Tanya is a Toronto journalist and photographer who has a craniofacial condition called Moebius syndrome. It typically causes some facial paralysis, including “smile” muscles that don’t work and eyes that don’t move side to side. Over 10 years ago Tanya produced a photo series of children and adults with a variety of craniofacial differences called Face Value (I got to be one of them as I had recently lost my hair to the autoimmune condition alopecia! See below). 

This is how CBC described Tanya’s recent radio documentary: “On this episode of The Doc Project we hear what it's like when your story isn't told. Tanya Workman has a facial difference, something we would once label as a deformity or disfigurement. So does David Roche. But while language has evolved, have cultural attitudes and understanding? This doc is about perceptions of difference and the stories we tell about those differences.”

BLOOM: Why did you choose to do this documentary?

Tanya Workman: This piece has been living inside of me for a while. I realized that when I get stared at on the streetcar, there’s more behind it than a little girl seeing and wondering about a face that’s different: her reaction to me has an impact on the stories I tell myself about myself.

All of us carry narratives about who we are that have been shaped by the experiences and relationships we’ve had in our lives. ...That question of ‘what happened to your face?’ reminds me that others may look at me differently, and recalls other moments of being singled out. One example I share was when a classmate called me ‘Dr. Demento’ in elementary school and I felt like I'd been put in a box. When I'm asked 'What happened to your face?' it makes me self-conscious about a physical part of myself that is just one part of me.

Over time I’ve often wondered, how do I counter that? Is there a way to bring something bigger into the world to talk about how we see and tell stories about difference? 

So the idea was for my own experience to be the way into the documentary, and then to talk to people who studied this stuff and people like David, who told stories about it, and other people who had a facial or other physical difference that informed their work as artists. I wanted to explore the relationship between the face, story and the self.

BLOOM: It seems that through the documentary you’re torn between wanting to tell your story as it relates to facial difference and not wanting to tell it, or wanting to move on from it. 

Tanya Workman: Even though my facial difference is a part of who I am, I still struggle with that fact. I might not think about my facial difference for weeks or months and then someone stares at me and I wonder: ‘Okay, is there something I can say that can add to some understanding about what a difference is?’

I know photographers and writers who mine their own experience, or do work that’s personal in nature. But for me actually talking about something that is very obvious is sometimes still difficult.

I’ve found myself torn between being the journalist who tells others’ stories and being an artist who looks inside herself and creates something from her own experiences. And doing so publicly brought up conflicting emotions. 

So, yes, I want to talk about it, but I don’t want to talk about it. My story is more than the medical story or the story of being stared at, and perhaps that’s the point.

BLOOM: That makes sense. I read Robert Hoge’s memoir called Ugly, about being born with a tumour that gave him a significant facial difference. He said our face is our passport. What does our face mean in our culture?

Tanya Workman: The face is about expression and eye contact and how we communicate with people, and it is identity, too. 

David Roche in his book The Church of 80% Sincerity, talks about the face being the locus of the human persona. People see it as very symbolic. It reveals our character and personality. The face is most often seen as a barometer of beauty. 

I, too, am guilty of allowing my gaze to linger on people who have striking features. The face is that first thing we see. We all look at other people and make judgments about them, whether we intend to or not.

The Moebius syndrome face is described as being like a mask. I do have facial expression, just not as much. If the face is that place that reveals our emotions, but it lacks expression, it confuses people. I remember times when I’d just be sitting somewhere and someone would go by me and say ‘Smile, don’t look so grumpy.’ But this was just how I looked.

BLOOM: That used to happen when my son was young, too, because he has less animation in his face. So I’d be pulling him in the wagon and someone would walk by and say: 'Oh, is he angry?' That used to really bug me, because no, his face was just in a natural resting state. I used to hate when someone read a negative intention or emotion into it.

Tanya Workman: Yes, people can make assumptions about you.

BLOOM: In Robert’s memoir, he writes about if he had a choice of not having his facial difference, or not having to wear prosthetic legs, he would choose not having the facial difference, even though it’s the disability of his legs that affects him most in a daily functional way.

Tanya Workman: That’s interesting. When my CBC mentor Steve Wadhams interviewed me he asked a similar question: ‘If you had a magic pill that would take away your facial difference, would you take it?’ At the time, I answered it, but when I listened back to the tape we discussed why I thought it was an unfair question and not to the point.

What about if you could have not lost your hair? Would you prefer that?

On the surface, I might say yes, but practically I know my facial difference has made me who I am.

This is why stories, and how we see people, are so important.

BLOOM: What has been the most challenging part of having a facial difference?

Tanya Workman: That’s a hard one. It’s changed over time. When you’re a teenage girl, like all teenage girls, you’re worried about appearance and fitting in. If you’re a girl who looks a little different, you take things more personally or you think ‘they don’t like me because of this.’ When I was younger, it was just about acceptance by peers. And then as I got older, I think the hardest thing is remembering that I have a facial difference. As I said in the documentary, I grew up, I went to journalism school, I started a career and bought a house. You become who you are. But then when someone stares at me, I’m reminded that my face may leave a different first impression of who I am.

BLOOM: Initially you weren’t going to be part of the documentary in terms of sharing your story. Why did you change your mind?

Tanya Workman: The Doc Project and my mentor Steve were interested in me being a part of it. Steve asked me to go away and think about any key moments in my life—mental pictures of my experiences as a woman with a facial difference. Then I was interviewing an artist with a facial difference and that person said: ‘It sounds like you are interested in hearing my story for the purposes of telling your own story.’

I didn’t want to admit it, but when I listened back to the tape, I realized it was true. I’m very interested in how people’s embodied differences provide material for the stories they create, and that’s what initially drove me to start working on the documentary. 

Part of that comes from feeling an urge to express myself in some similar way—to do what my face can’t. My mentor had the idea that one way we could structure the piece would be to pair David’s story with my own, to do a duet. So David talks about this, and then I’ll talk about this. And together, our experiences tell a larger story.

BLOOM: In the documentary, when the little girl on the streetcar asks her mom ‘What happened to her face?’ you answer in a really compassionate, measured, positive way, to try to explain it to her. But aren’t there times when you don’t feel like educating people? When my son was younger, I went to AboutFace and we learned about how we should come up with a simple explanation and also some funny comebacks when we were in difficult social situations. I think I used to do that really well, but I’ve found, over time, that I’m more put out by the need to educate people. Obviously if someone is genuinely interested, that’s one thing. But I find so much ignorance now, when I’m out. Some people can be so rude. And sometimes I don’t feel like being the mature person who takes the high road and educates. I just don’t want to have to deal with it.

Tanya Workman: One of the people I interviewed for the doc was Eliza Chandler, a fellow in the School of Disability Studies at Ryerson. She spoke about how often difference and disability can be seen by others as a problem in need of a solution. Difference is viewed as sitting in the body, without acknowledging that it is created socially and culturally.

While our stories—and explanations—may be elicited by others, we experience them in different ways, depending on where we are and who we’re with, Eliza says. For example, she might experience her disability one way when she’s teaching a class and another when she goes to the emergency room for help. The problem of sharing only one part of a disability experience is that it collapses a whole range of experiences, emotions and relationships down to a stereotype, Eliza says. The more complicated, nuanced and diverse stories we have, the better. 

I think that’s at the heart of why I struggle with the question: ‘What happened to you?’

Two years ago I walked part of the Camino de Santiago pilgrimage route in Spain—about 225 km with a group, and another 90 or so on my own. At the end I met a woman from Slovakia. I really liked her and we got on, but over dinner she said: ‘It’s probably good that you went with a group for the first part of the trip.’ I said: ‘Oh. Why?’

She was implying that my facial difference might have made it difficult for me to connect with and be social with other pilgrims. We talked about this briefly, and I asked if she had trouble meeting my gaze—which I know people sometimes do—but I didn’t want to linger on it too much. The story of that trip was that I’d walked the Camino, not that I was worrying about what others thought of my face. It’s in those little moments you realize people are making assumptions about you.

BLOOM: In the documentary you talk about the series of photos you took of people with facial differences. And you say you were trying to capture the person, which is not their difference. How do you take a photo of a person as opposed to a photo of their difference?

Tanya Workman: When I think of a photo of a facial difference, I think of medical images, or images that focus on specific facial features or body parts. I think of sitting on a chair in a hospital photo studio and facing left, right and forward to get all the views. A clinical photo is like a police mug shot.

Taking a picture that captures a person as a whole is more about putting in the time to allow that person to feel comfortable enough that they can be at ease—with you and in front of you—to take off their mask. And yet, what I see and what you see and what the person being photographed sees may be different. It’s kind of like making a radio doc—everyone is going to hear something different. But you try your best.

BLOOM: Because you are a photographer, writer and producer, how did you decide what medium to use for your documentary?

Tanya Workman: Several years after I started the photo series Face Value, I became involved in a storytelling project created by Dr. Carla Rice from the University of Guelph—first as a participant, then as a facilitator. Called Project ReVision, it was a series of workshops where women with differences and disabilities were given the time and space over several days to make two- to three-minute videos about their experiences using their own words and images. 

What stayed with me long after my relationship with the project ended was the potential and power that a story, told through the person’s own voice, can have to connect people. That led to me to rethink my original photo series, and want to embark on a new project that was more participatory, more about self-representation, and that included audio and personal stories. But I got only so far before I had to take a break from it.

When I heard about The Doc Project, which is both a radio show and a mentorship program, I’d just finished reading a draft of a memoir by a man from Thunder Bay with a facial difference. It was the second manuscript by a person in the facial differences community I’d been asked to provide feedback on in six months (I’d also read a screenplay featuring a character with a facial difference and seen a short film about a teenaged friend with a facial difference that was made by another friend with a facial difference). It seemed to me that there was this drive in the community to share our experiences, but the reasons for doing so were layered.

BLOOM: What advice would you give to parents of a younger child who has a facial difference?

Tanya Workman: Just love your kids. Love them for who they are and as these things come up, figure out how to deal with them and what works for you. Every family is different and has its own way of doing things. I’m sure the doctors and therapists may say one thing, and people with facial differences may say another. But you have to pick what’s right for you. Most importantly, see people as more than their appearance.

The photo below of Louise Kinross was taken by Tanya Workman as part of her Face Value project over a decade ago.

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