Thursday, January 31, 2013

Mending bones






















"You look adorable" said my dear colleague Joanna as I headed to the door.

"I don't feel adorable," I said.

I had one arm in my bright pink and blue striped coat and my head in its tassled hood so that my other arm, in a cast, could jut out in a sling.

Last Saturday I broke the long bone in my arm when I slipped on ice. We live on one of the steepest streets in Toronto. I heard the crack and felt an odd bulging sensation around my wrist. I got out my phone but realized that I couldn't move my right hand to use the alt key. I waited on the cold ice, thinking someone might appear. But they didn't, so I gingerly walked up the 29 steps to our house, holding my right hand in my left.

"I fell and broke my wrist."

It was 6 o'clock and for the first time we'd purchased movie tickets for a show that night at 7.

"Maybe you just pulled something out of place. Let's take a look."

"I can't take my mitt off,' I said, staring at the blood red Olympic mitts I'd borrowed from one of my daughters.

"Why not?"

"It hurts too much."

----------------

I'm a speed typist but today I was trying to type and format using my left hand. It was painstaking work and I was trying to submit an abstract for a conference on a deadline. The hours ticked on as the most basic tasks -- like highlighting, copying and pasting, even changing a font -- proved too much.

When I began getting security messages from a firewall that prevented me from moving within blogger, I was almost brought to tears by this request from our IT help desk. "Press control, alt, delete."

"I've only got one hand," I squawked as I laid the phone down and did a one-handed finger version of the game Twister.

The family was not used to the new me. "If you're waiting for me, it's because I can't tie my shoelaces."

When my Occupational Health and Safety coworker came by to get a serial number on my adapted mouse he was amused to see the penmanship of my non-dominant hand.

"I was going to e-mail it to you," I said, "but I was having trouble typing."

I dictated the numbers from my chicken scrawl but I noticed that he turned over the mouse to eyeball it himself.

Later in the afternoon, as my pain meds were wearing off, I was setting up our next BLOOM speaker night on Facebook.

Rich Donovan, a former New York Stock Exchange trader who now advises businesses on how to engage the disability market, asked about my arm. Rich has cerebral palsy and attended our school back in the day.

"It makes me think of kids with multiple disability and at what point they just give up," I wrote. Below is the conversation and I'm not fixing my typos (I did delete our scheduling remarks).
3:00pm
Rich Donovan

and they give up because few expect anything from them

3:14pm
Louise Kinross
im not sure i agree although expectations are a problem - if u cant find a reliable way for a child to communicate thats a massive demotivator -- i dont think there are any easy answers --

3:16pm
Rich Donovan
the first root in solving a complex problem lies in the set of possible answers...that set is too narrow today for PwD

3:21pm
Louise Kinross
you mean no easy answers is too narrow a set? i guess i still havent cracked the code and my son is about to turn 19 and it isnt from lack of effort -

3:22pm
Rich Donovan
no, i think society has to catch up to you...

3:24pm
Louise Kinross
of couse it took about 18 yrs for me to come to the realization that i dont control the outcome for my son and all the platitudes i was raised on about anything is possible if you try hard enough were garbage -- perhaps they should use that one on mortality

3:27pm
Rich Donovan
society still feels that the best solution is to take away all risk...that does nobody any good...once all options are on the table, it is a matter of finding the correct path for 97% of PwD

3:28pm
Louise Kinross
i wonder whether my son falls in the 3 per cent or the 97

3:29pm
Rich Donovan
 i bet 95% of parents ask that...

3:33pm
Louise Kinross
i dont think so -- not at this stage -- most parents with teenagers know -- sure, everyone asks when they're babies

3:34pm
Rich Donovan
as a parent myself, one only wants what's best for the kid...
the question is always defining 'best'.

3:36pm
Louise Kinross
i agree -- parents can get very confused with what makes them happy vs what makes the kid happy -- just because an experience is different doesnt make it less

3:37pm
Rich Donovan
ON THE NOSE!

3:38pm
Louise Kinross
but thats also how the rest of the world works and judges people -- and tells them theyre worth something or not

3:39pm
Rich Donovan
most folks would be miserable being me...action is what counts, perception is for screenwriters.

3:40pm
Louise Kinross
what if someone doesnt have the ability to act in order to overcome?
and i detest the word overcome

3:41pm
Rich Donovan
ok, i hope you are sitting down.

3:41pm
Louise Kinross
yea

3:41pm
Rich Donovan
how is that unique to disability?
One could say that comparing a ballerina to a cabbie...

3:43pm
Louise Kinross
because when u r born with regular or above average abilities you are "gifted" -- life truly is a breeze -- you learn everything through osmosis

3:43pm
Rich Donovan
myth

3:44pm
Louise Kinross
i grew up with the idea that intelligence was earned -- now i know that's wrong -- it was just a gift that could be used

3:44pm
Rich Donovan
i made choices that led me here
luck is earned, you still need to choose a path


3:45pm
Louise Kinross
but you had the natural intelligence + smart choices ++ ability to express who u are

3:46pm
Rich Donovan
i had a friend when i was a kid...

3:47pm
Louise Kinross
im sure you did make choices that made a difference -- but we also have to work with what wwe're given

3:47pm
Rich Donovan
XXX was/is non-verbal w/ 'severe' cp...
but he understood everything

3:48pm
Louise Kinross
but what if he didnt understand everything and never found a reliable way of communication

3:49pm
Rich Donovan
if society was results based, not process based, he would be in a different spot.
again...how is that specific to pwd?

3:50pm
Louise Kinross
are u saying society is results based but shouldn't be?

3:51pm
Rich Donovan
no, i'm saying it is process based, and should be results based.

3:51pm
Louise Kinross
it seems pretty results based to me

3:52pm
Rich Donovan
in that we need not care how one gets there, just get there

3:53pm
Louise Kinross
i think that is true for a lot of physical only disabilities whre you can find workarounds

3:55pm
Rich Donovan
my point is, potential needs to be unrelated to disability...whether one's potential is high or low, true inclusion allows for both

3:56pm
Louise Kinross
sometimes rehab isnt rehab and technology hasnt progressed to the point its easy for some people to use

3:57pm
Rich Donovan
we'll get there...when someone paints the right picture
today, the picturee is still spelled CURE

3:58pm
Louise Kinross
okay im interested in yur point -- but lets say that instead of being able to maximize your intelligence you have to become an olympic gymnast w your disability? how is that an eben playing field

3:58pm
Rich Donovan
its not

3:58pm
Louise Kinross
i agree -- cure is about as crazy as saying we're immortal

3:59pm
Rich Donovan
never will be...by definition
i'm not trying to even the field...i'm trying to tilt it in our favor

4:01pm
Louise Kinross
but that's where i think you need a different way of assessing value

4:01pm
Rich Donovan
'we' have been playing by 'their' rules...i have a better game and 1.1 billion people behind me
oooo...i like that one

4:03pm
Louise Kinross
my son will never graduate high scgool but has taught me more about whats impt in life -- but who wants to listen? we dont even have the words to describe this kind of human value
im writing about a children's rehab model where normal is the benchmark and theyre not even measruring some of the most important things -- they have no way of detecting or seeing them

4:05pm
Rich Donovan
sure we do...you know the value in your son, the rest of the world just needs to understand something they are not exposed to

4:07pm
Louise Kinross
i think there has to be a willingness and i dont see it - i see people trapped in and actibg on stereotypes they dont even know they have and would never admit

4:09pm
Rich Donovan
i wish change happened faster

I signed off knowing I still had to produce this abstract and now I was a wreck (in more ways than one).

An hour later there was a knock at the door. It was my good friend Crystal, a former Holland Bloorview client who sits on a number of committees and has brilliant ideas, some of which she's shared in BLOOM.

She was surprised to see me in my current predicament. "I guess this gives you a sense of some of what this is like" she said gesturing to the hospital halls around us.

I nodded my head, wondering how Crystal, my son and other children had ever survived their multiple surgeries and set backs and gruelling rehab. This was a cakewalk in comparison.

"I can't imagine what it would be like to have your dominant hand casted to strengthen the weak one," I said. "I think I would punch a hole in the wall with my cast."

Of course, as a parent making the decision for my child, I might not have ever had a cast on either hand.

"It's called constraint therapy," Crystal chuckled.

"For a reason," I said.

Monday, January 28, 2013

Five things I wish parents knew
















By Dr. Peter Rumney

I’ve been asked to write a brief article to parents who are living with and supporting children with disabilities. As a pediatrician who’s worked at Holland Bloorview in its many forms and structures for over 25 years, I’ve had the privilege of meeting and working with many families and many children with disabilities. I’ve also had my own personal experience within my family with children and relatives with disabilities. Here are five things I’d like to convey to parents in the hope of strengthening the relationship between us. Thank you, Peter

1. We’re parents and family members, too

Staff who work here are parents and family members, too. We’re trying to be as objective, supportive and clear as possible in working with you and with your child and with the issues and challenges your family is facing. We also feel for you with the struggles, the frustrations and the sorrows as well as the celebrations that come with having a family member with significant disability. We may not be able to fully understand the specifics of your and your child’s situation, but we have worked through many situations with similar challenges with other families, and we may even have lived through these very painful issues in our own family.

Personally as a pediatrician, supporting families through the rehab process can be the most frustrating and heart-wrenching experience as well as the most liberating and invigorating. We do get to share in the celebrations and the progress of your child. More importantly, we get to know, appreciate and love your child’s personality, resilience and joie de vivre.

2. We tell the truth

The second key point is that we tell the truth. We tell the truth to you and to your family members. Our biggest frustration is that in many cases we don’t have more information to share with you about your child and his or her future. We don’t always have the specifics about how far your child will go, how much recovery will be seen, and how the specific disease process or challenge is going to affect your child—and you—in the areas of your child’s function and development in all facets of life.

Through experience, we have learned that telling the truth is the easiest, most effective way of communicating. It is the most ethical way to communicate with you and your child. Providing information that is age-appropriate and accurate to your child when he or she asks is the most effective way to help them understand what’s happening, deal with what’s happening, and be able to progress, move on and work through the challenges over the long term.

Children are incredibly attuned to what is going on around them. They’re very astute. They know when we’re trying to hide things from them and their imagination of what we’re hiding, or not telling them, is always more dramatic, fearful and terrifying than the truth. Knowing that you as parents are sharing with them the reality of the situation helps your children understand that you are there for them in the hard times as well as the good times.

We have also learned, through much experience, that keeping information from a child doesn’t protect or support the child, which is what some parents hope. In many cases where parents withhold information, we see greater challenges and frustrations for the child and family members over time. To quote ancient wisdom: “Telling the truth does indeed help set you free.”

3. Please don’t use health workers as threats to your child

Throughout my pediatric training I’ve heard young parents tell their children: “If you don’t behave, I’m going to tell the doctor to give you a needle.” They were, in essence, threatening to punish their child. This sets the child up to see doctors, nurses and health-care providers as punitive and frightening characters who are painful to deal with.

We do sometimes have to do things that are painful and uncomfortable in order to help your child. We’re striving in every way possible to help children deal effectively with the pain that comes with therapy and other interventions. We do this with techniques that distract children or help to minimize their anxiety and fear. We try to minimize the pain and discomfort of the procedure through medication and application of cooling packs. Even the simple provision of sugar and water to infants has been proven to be incredibly helpful in minimizing pain and discomfort.

Please help us make the challenging and difficult parts of therapy as pain-free as possible, and we’ll help you in any way we can in guiding your children with respect to behaviour, communication and choices as they grow and mature.

4. Understand that rehab is not a simple exercise process

What we’re endeavouring to do is find the best techniques possible to help your child’s brain develop, recover, adapt, change and learn new skills, strategies and techniques. The brain is still a very confusing and complex system of cells and networks that we’re far from truly comprehending. We know that the things that help with brain development are the basic tools of health and wellness. These include good nutrition, good stimulation, good rest and the guidance of movement in a positive way that reinforces healthy patterns as much as possible.

However, the brain does not develop as easily as a muscle develops. Pushing more therapy, more repetitions, more time, does not necessarily improve either the quality or the speed of the development and recovery. It is this challenge that helps us decide how often therapy needs to be administered, how intensive it needs to be and for how long. We come to this decision by looking to the scientific literature, following the experts in the field, and evaluating the outcomes of therapy as objectively and reliably as possible.

What we do know is that we as humans learn by doing things and experiencing things. We learn best in the environment where we need to do everyday activities. This means that the place to do those activities is back in the community as much as possible: in your school, in your home, in the daycare, in the community centre, which is where these activities are the stuff of life. Our initial intervention in the clinic or hospital is the first step to launch your child back into that home environment. This is the ultimate goal. We want them to be there with you, their friends and their classmates. We want them to be living, learning, striving and maturing so that they can truly celebrate and thrive.

5. Balance is everything

Finally, the key thing—and the hardest—for all parents, therapists, health-care providers and people in the community, is how do we find the proper balance in our lives? What is that best balance for you, your family and your child? What is the best balance of therapy and relaxation? Spending time with other family members, children and friends in ways that allow you and your child to relax, decompress and enjoy is known as ‘recreation’—in essence, recreating ourselves so that we can go back and do the hard, painful, challenging things that sap our energy and test our hope and our strength.

I was taught by a very wise and experienced teacher that as humans we do all things in groups and we do things best as humans in groups. We grow best in families and in communities. We celebrate in groups, we mourn in groups, we learn in communities of people. We need to foster these ties and interdependencies with friends and family and the wider community. We need each other. Strong connections to our families, faith groups, friends and neighbours help us deal with the challenges that life gives us. These ties help us overcome the hurdles that are inevitable in each of our paths. So, take time to appreciate and build those relationships around you, so that they are there for you in the good times, as well as the bad.

I hope that these simple thoughts are helpful and reassure you that, as the Canadian sage Red Green has said: “We’re all in this together, and we’re pulling for you.”

Dr. Peter Rumney is physician director of Rehabilitation and Complex Continuing Care at Holland Bloorview and an expert in acquired brain injury in children.

Thursday, January 24, 2013

'Just like me—only different'













Michelle Smith, 20, is the focus of the documentary Three Days to See, which was inspired by a Helen Keller essay about what Keller would like to see if given sight for three days. “It uses blindness as a metaphor for how we all lose sight of what’s important,” says Jeff Migliozzi, Michelle's teacher at the Perkins School for the Blind. Michelle was born blind, has Asperger’s syndrome and left her home in rural Maine to be a student at the Perkins school in Boston at age 14. “The movie is about passion,” Michelle says. “It’s about liking what you like, trusting your own voice and not letting your disabilities dictate what you should be passionate about.” Three Days to See is trying to raise funds to ensure its footage moves into post-production at Kickstarter. I spoke with Michelle.

BLOOM: What has been most challenging for you growing up?

Michelle Smith: Not only am I legally blind but I also have Asperger’s syndrome. And while it’s great to be passionate about things, what’s not great is my brain is wired differently, so I don’t connect with others on the same level most people do. I don’t feel empathy and I don’t feel a lot of the natural emotions other people feel, so it does get difficult. It is a disability. I can’t ignore it and I’ve had a problem where people don’t know about it and when they find out they don’t know what to think of me. It caused me to be fired from a job. When I was at the Perkins School for the Blind everyone there understood Asperger’s, but then I graduated last year and I went into the working world and my vocational counsellor didn’t tell my boss I had Asperger’s. In some ways my blindness is an easier topic to tackle when it comes to working. I can’t see the labels, so I get a magnifier. But what do you do when you have Asperger’s? There isn’t a little gadget you can get to fix this.”

BLOOM: You mention in the film’s trailer that you have good ideas and opinions, but people don’t listen to you because of your disability. How do people react to you?

Michelle Smith: It depends on how long someone has known me. If they see me with my cane at the grocery store, they’ll think “She’s so brave” and that consumes all of their opinion of me. In their mind I’m no longer a person, I’m sort of this personification of blindness, like Helen Keller was. I’m no longer this chick, I am this brave blind woman—look at her go. And that’s not how I want to be perceived. I want to be seen as a human being, as a person. At first it felt good when people said I was brave for going to the store to get milk. But then I realized brave is another word for saying 'we didn’t think you could do this.'

Once people get to know me, they realize not only is she blind, but she has this other problem too, and they don’t know how to deal with me. It’s hard. They feel they have to walk on eggshells around me. I’d rather they ask me questions than pretend the Asperger’s doesn’t exist or treat me like the elephant in the room.

I have one really, really close friend who is also blind. We’re in a similar position where we’re both stuck in our house most of the time. I graduated last June and live in Maine with my mother. It’s snowing and I find it hard to manoeuvre with snow banks so I stay in my room a lot of the times. We’re both bored so we call each other up on Skype.

BLOOM: Tell me about Three Days to See.

Michelle Smith: The themes revolve around Helen Keller’s essay Three Days to See. It’s about being passionate about what you like and not letting your disabilities dictate what you’re passionate about. Even though Helen Keller can’t see, she understands art. And even though she can’t see or hear a play, she understands it and is passionate about it. It’s the idea that anyone can appreciate art and theatre, and not having that level of exclusivity that is so common in our society today. In the movie, I go through many stages of interests. When it starts, I was interested in anime. Then halfway through I went through a big phase when I was playing minecraft. And now that the movie is almost done and being created, my obsession is Daria on MTV. It’s an older show from the 90s about a teenager who wore glasses and was disenfranchised from youth culture and sarcastic and funny and awesome. It was a cartoon and the opposite of most stuff on TV.

BLOOM: What kind of impact do you hope Three Days to See will have?

Michelle Smith: It’s about looking at people as people, and not seeing people as their disability or as a personification of their disability, or as a personification of a stereotype. In the film I say ‘This person is just like me—only different’ and the point is that everyone’s like you, in terms of their hopes, dreams, fears and anxieties, even if they don’t show it. The movie isn’t about being sighted or blind per se, it’s about treating people like people and trusting your own voice and thinking twice about having preconceived notions about someone. If I affect one person’s perception of the world and how they should view other people I’ll view this as all worthwhile.

One of the reasons I like Daria is there’s an episode where she decides ‘I won’t wear glasses anymore’ and she wears contacts but the next day she can’t put them in because her eyes hurt so much. So she doesn’t wear either and she’s stumbling around, because she’s vain, but eventually she realizes it doesn’t matter. She’s talking to her best friend Jane at the pizza parlour and she says: ‘When I take my glasses off and look in the mirror I can’t see a thing. And when I put them back on I can see things that other people can’t see. I can see better than other people, so who cares what people say about me and my glasses.’ And then her friend Jane says: ‘You aren’t talking about eyesight anymore, are you.’ And Daria says ‘No, I’m not.’ I’m like that. I can see things other people can’t.

BLOOM: I would imagine that being blind is an advantage when getting to know someone in the sense that you don’t judge people based on appearance.

Michelle Smith: I’m thankful that I don’t judge people on their looks. I think if I’d been born with full vision and no Asperger’s syndrome I would have grown up to be kind of shallow. When I talk to people I don’t care what they look like, what clothes they wear, what race they are. I just want to talk to them because they’re another person. I can learn something new about their experience and there’s so much for me to learn. I don’t understand people when they’re passive aggressive or don’t say what they mean. I can’t read between the lines. These aren’t always things I want to learn about the human experience, but they’re things I have to learn to survive.

BLOOM: What are your dreams for the future?

Michelle Smith: I write fan fiction and I think it would be cool to be a writer of original fiction. But I’m practical, so I think I’m going to go to college and pursue publishing and then I can resume my writing on the side.

BLOOM: What is fan fiction?

Michelle Smith: Let’s say you love a book series and you’ve read all the books and seen the movies and you want more. You go to a fan fiction website and there are thousands of stories—some as long as novels—about the characters and situations but not written by the author, written by fans. I write and read Daria fan fiction a lot.

Wednesday, January 23, 2013

An insider wakes Wall Street to the disability market

Rich Donovan is founder and CEO of Fifth Quadrant Analytics (FQA) in New York City, a company that helps businesses assess how well they’re engaging people with disabilities as employees and customers. With 1.1 billion people globally, the disability market is the largest minority market, Rich says, but one typically ignored. FQA has developed a Return on Disability Rating that measures how well a business is performing—in recruiting disability talent, building its disability customer base, and mining business innovation from the adaptation that disability prompts. In 2006 Rich founded LIME Connect to match the brightest people with disabilities at top universities with employers. Rich (above with son Maverick, 2 1/2) has cerebral palsy. Meet Rich March 27 at a BLOOM speaker night.

BLOOM: Before starting FQA, you were a very successful trader for Merrill Lynch. I spent my university summers working in brokerages here and it didn’t strike me as a place where people with differences would be welcomed. What was your experience?

Rich Donovan: The opposite. I found in that business that it doesn’t matter who you are or what you are, whether you’re purple, blue or polka dot, if you can provide results, you’ll be very successful. Initially you may have a higher hurdle to jump over, but once you’ve proven your value, your worth, there’s no better business for someone who is 'different.' I was on the trading floor and nobody cared what you looked like as long as you got the job done and got the results in the door. For me that was the perfect environment because I delivered, every year, consistently, day in and day out.

BLOOM: How has having a disability influenced your work?

Rich Donovan: If I wasn’t disabled, I’d probably be either a fighter pilot or some kind of guy working with machines because that’s always intrigued me. Because I have a disability, I have to do things a bit differently. It’s caused me to develop strategies for dealing with a world that’s not built for me. In the worlds of business and finance, that’s what everyone is looking for: that unique point of view in the world that nobody else has, that nobody else can develop. The great thing about disability is that it’s inside us. We have to [adapt] day in and day out to survive, and when you start to apply those skills to business and financial problems, and to things that people come in looking at in the same way in general, it gives me a huge advantage.

Working for me is easy. Try navigating the New York subway system. In a day that involves getting to and from the office, dealing with complex financial issues is the easiest part of my day. That turned my perspective completely upside down. For most traders the hardest thing is to remove emotion from the calculus. For me, trading wasn’t the most risky think I did every day. That changed the perspective of how I look at business problems.

BLOOM: LIME recruits high-achievers with disabilities from the best universities and matches them with employers. How could we broaden this to bring people with a variety of intellectual and physical disabilities, who don’t have degrees, into the workforce?

Rich Donovan: That’s a very complex question, how you bring this class of skills levels right up and down.

LIME recruits mostly on campuses but also experienced hires as well. The focus is from the corporate perspective, on what corporations need in terms of talent as opposed to the typical vocational rehab model where you take a square peg and find any whole it can fit into and it typically fails. There’s a mismatch. Companies that are just getting their feet wet want to do something to get someone in the door. When that person doesn’t match a job, they’re turned off and don’t want to touch it again.

The way LIME addresses this is very simple: It takes people with disabilities who already have the talent the company wants. About 90 per cent of the people LIME sees on campus have learning disabilities—things like dyslexia. Because I’m the founder, people assume that most of our recruits have physical disabilities. But they mostly have learning disabilities because that’s where the numbers are.

A big issue I have with how the United Nations and governments work with disability is that they’re overwhelmingly branded toward physical incentives, when less than 10 per cent of the people with disabilities use a wheelchair or have mobility problems, less than 3 per cent have vision issues, and less than 3 per cent have hearing issues. But that’s what dominates the discussion of disability.

The reality is that 71 per cent of disability is invisible. It’s a learning disability, it’s chronic pain, it’s something you wouldn’t know seeing someone walking down the street.

Because organizations that focus on physical disability have been around for the last 40 to 50 years, the brand of disability is the wheelchair, or the white cane. But that doesn’t reflect the numbers.

To fit a market into a business context, we make a conscious effort to ignore that—to stay condition-blind and focus only on what matters to consumers with disabilities and to potential employers. I frankly don’t care what medical diagnosis you have. I care more about how it affects your behaviour as a customer and as a potential employee of a company. That’s the difference in what we do.

BLOOM: You’ve said the disability market is the biggest minority market in the world, if you include people with disabilities and their close relatives. Why doesn’t it feel like we have any power?

Rich Donovan: If you look back from the 1950s to the 1990s, disability groups have painted a picture of disability that was so pathetic, and so 'God help you' and 'I need you to help me to keep these kids safe.' That creates a brand in society that these guys need help, they’re charity, there’s nothing of value there. But when you look at the actual statistics today, when society has dramatically changed, the numbers don’t bear that out.

People with disabilities globally, not counting friends and family, are 1.1 billion people, which is the size of China.

‘Yea, but they have no money,’ people say. Well, that’s part of it. We know that the average income is lower among people with disabilities. But it’s still 75 per cent of the typical person. That’s serious earning power. If you look at the bell curve and look at a normally distributed population you begin to realize that income level is brought down by the lower functioning boats. But if you look at the average consumer with a disability, they may make $5,000 to $7,000 less a year, but that’s still almost $30,000 a year.

The pushback I get from charities is that ‘these people are poor’ and they’re not. Yes, there is a segment of this population that is poor, and there’s a segment of every population that is poor. But it’s not unique to disability. The reason no one has heard of these folks as consumers and savers is because there’s a vested interest in charities keeping the view that they’re poor.

The perception is that all people with disabilities are poor. I would say statistically a higher percentage of people with disabilities are below the poverty level than the typical population, maybe 20 to 25 per cent. But that still leaves the vast majority of folks who are active consumers. And even people below the poverty level are active consumers.

As we evolve from the social mindset of ‘take care of me’ to ‘hey, these people are consumers with demand’ that’s when change will happen.

That’s why you haven’t heard of this before. Attitudes have changed and education has changed. Guys like me didn’t exist 30 years ago because we wouldn’t have got the education we needed. People say ‘You’re one in a million Rich,’ but I’m not. There are millions and millions of people like me.

BLOOM: You mentioned Walgreens—the largest drugstore chain in the U.S.—is a leader in employing people with disabilities. What have they done?

Rich Donovan: It started 10 years ago when the senior vice-president of their distribution business—who happened to have a child with Down syndrome and who’s a smart business guy—realized 'Gee, what’s going to happen to my kid when they leave school? I need to figure out how he or she will be a productive member of society.’ He started thinking about how he could integrate people with disabilities into his business. It started out as an altruistic approach to hiring people with disabilities. He began in one distribution centre in South Carolina. He hired about 10 to 12 people with disabilities to take product in from the vendors and ship it out to their stores. All kinds of machinery and processes are involved.

Over the next year they realized something unique. They started to see that their costs were going down. They couldn’t figure out why. Then they realized that people with disabilities did things a bit differently on the floor. They saw that they took complexity out of the process. Adapting the workspace for these people with needs and accommodations reduced complexity. So let’s say instead of typing something in repetitively, a process becomes colour-coded or symbol-based. These employees changed the way they were interacting with the environment and reduced costs by 20 per cent. Every step has a cost and every time they make a mistake there’s a cost.

The average cost of a distribution centre is $10 million a year to run. So Walgreens was putting $2 million in their pockets every year.

BLOOM: Are staff with disabilities paid at market rate there?

Rich Donovan: I hope they pay them more for saving them money. There’s no wage subsidy at Walgreens. Wage subsidies disgust me. I’m disgusted by the fact that the only people you can pay below minimum wage are people with disabilities. Walgreens has developed a model with its own training programs and job coaching and will take those learnings to other sites and centres.

BLOOM: I read that over 40 per cent of the 700 staff in Walgreens’ South Carolina distribution centre have intellectual or physical disabilities?

Rich Donovan: I think what they’ve done is spectacular. People in this field still think of it as a recruiting effort, but it’s actually far more powerful than that. It’s changing business process. People with disabilities have had to learn ways of adapting. If you expand that across the entire economy and the way every business does things, think about what that 20 per cent number looks like. How powerful it is.

BLOOM: I think what Walgreens has done is amazing. But I wonder if in some ways it doesn’t still pigeon-hole people with disabilities as only able to work in assembly-type jobs? When my son was at a segregated school, they had him putting flashlights together—I guess in anticipation of him doing piece-meal work in the future. What if my kid isn’t interested in that?

Rich Donovan: When it comes to disability, one of the things we’re poor at is seeing the trees and not the forest. Walgreens is the first out of the gate and it’s going to take years for other businesses to realize what they’ve done and start to get comfortable with the concept. People start with one thing and then they realize ‘I can apply these insights here and here. I can move them into these other environments.’ The smart people start to realize that there’s real value in these insights. There’s so much value, so much profit to be made here, that smart people who want to make money are going to jump all over this. All that will happen, but it’s a question of how long will it take? I think it will probably be three to five years.

BLOOM: What is the purpose of your company 5th Quadrant?

Rich Donovan: To put rigour and process and numbers around how you make money relative to disability. How does a company take this amorphous concept of a person with disability and put it to work for their shareholders? How do they build value from disability? That's how every other minority market has developed over the decades. Now, I don't want it to take 70 years, like it did for women. I don't want it to take 30 years, like it did for racial minorities. We've learned lessons there that can be applied here.

We’re basically giving every company that we analyze a score—from zero to five—five being good, zero being not so good. We assign each company a rating.

BLOOM: How can companies improve on their rating?

Rich Donovan: For each company the approach will be different because each company creates value for its shareholders in different ways. For some, talent tops the list. How do you get people with disabilities in the door and get the most out of them and keep them there? For firms where process and innovation is key, we'll look deeply at productivity. You take the Walgreens model, where you take innovation from disability and apply it across your business model. For me, how firms look at their customer is absolutely critical. Astonishingly, this is probably the least commonly addressed factor today. Among the questions we ask—how do you leverage disability to maximize revenue from your customer base?

And that includes not just people with disabilities but their friends and family, who are probably more numerous and more wealthy than the people with disability. As a parent, you know how you react when you see a company reaching out to disability. It bonds you to that brand. We’ve studied this, we’ve studied what this bond looks like. No one has really looked yet at what do people with disabilities actually want as a customer? What do they desire? There are examples here and there. This in my mind is the biggest opportunity for business: to start activating on the customers.

Tuesday, January 22, 2013

Why is eating healthy so hard?















It sounded failure proof: "This made a great-tasting sauce with no extra work," read the descriptor for Slow Cooker Italian Chicken Breasts.

My kids like chicken, they like Italian, and doesn't the slow cooker turn everything into a tender, flavourful concoction?

As part of my loving-kindness project, I purchased two more cookbooks to help us eat healthier. One is The Complete Idiot's Guide to The Mediterranean Diet and the other, the one with the Italian chicken, is 500 Low Glycemic Recipes.

All I had to do was dump sliced onion, chicken breasts, tomato paste, some white wine and a bunch of seasonings in a slow cooker and switch it on low for eight hours.

All went well till I came to the tomato paste. The recipe wanted 12 ounces (340 grams) but my cans were measured in millilitres.

"Do you know what mls are in grams?" I shouted downstairs to D'Arcy, who was on the computer. I had two 156 ml cans sitting in front of me.

Silence.

"D'Arcy?"

"A millilitre is a unit of volume and the gram is a unit of mass. They're different measures."

"I have 156 mls and I need the equivalent in grams."

I went on to the other ingredients, then noticed the tomato paste was also listed in ounces 12.

"What about ounces? What's 156 mls in ounces?"

"5.27 ounces."

"Thanks." I'll put both cans in, I thought.

I'd never made a recipe that called for two cans of tomato paste. Wasn't that supposed to be something you used sparingly?

I stirred everything up and poured it over the chicken breasts. It didn't look very tasty. It looked like thick, undiluted tomato paste.

"Are you sure about the mls to ounces?"

"That's what it says."

A couple of kids came in and looked at the thick red mush in the slow cooker.

"EEEWWW."

"What's that?"

"I'm not telling you, because I know what you'll say and I don't want to hear any criticism."

"Don't worry Mom. It's not like I'm going to eat it! I just wanted to know."

"Well I'm not telling you!"

I was hopeful that as the hours ticked by the slow cooker would do it's magic.

It was too late to eat the meal that night, so I heated it up the next day. Even after eight hours it didn't look very good. The chicken breasts had disintegrated into stringy pieces and the sauce had an overpowering tomato smell.

D'Arcy and I sat down to eat. He'd had a terrible migraine.

I mixed the chicken with rice, trying to tone down the tomato taste, but I wasn't successful. It still tasted like hot tomato paste with overdone chicken.

Ben began to bump down the stairs. "What's for dinner?" he signed.

"Chicken and rice" D'Arcy said, which I knew in Ben's mind would conjure up either a yummy Indian butter chicken dish, or my barbecue sticky chicken.

"Don't tell him that, he'll think it's something else."

I jumped up. I couldn't bring myself to serving Ben the Italian chicken. "Didn't you want some spaghetti?" I said, heading for the leftovers in the fridge.

When I sat down again D'Arcy's face was scrunched up.

"Is your headache really THAT bad?"

"It's not my head," he said.

"What happened? Was it too much tomato paste? What went wrong? I didn't omit anything."

As I was clearing up I put a portion of the "Italian chicken" in a lunch container and threw the rest in the compost. I knew it wouldn't get better with time.

Today I brought it to work. This could be a dramatic means of weight loss, I thought, recognizing I had absolutely no desire to eat.

I later took the container with me downstairs when I went to pick up some printing in the Family Resource Centre. I had to heat it up in the microwave, but I managed to get back to the elevator before I realized I wasn't holding the container anymore.

I had strategically left it at the printer.

I did eventually eat my Italian chicken. A colleague even remarked that it smelled good. "No, it doesn't. Trust me. It's horrible."

Now my kids want dinner and all I have is salmon and cod. And I don't dare try to snap something up with either of those.

"Mom. I hate fish!"

Thursday, January 17, 2013

Words that heal



Words that heal

“If you could be anyone using that ‘I am,’ who or what would you be?” asked John Fox, a poet and poetry therapist.

John was at the bedside of an 11-year-old boy at Blythedale Children’s Hospital in Valhalla, New York. The boy was lying down, with a breathing tube attached to a surgical opening in his neck that gave him an airway. He couldn't talk. When John and the hospital’s certified child life specialist first approached the boy, they asked him to raise his hand if he’d like to try some writing.

He did, so John read him a poem about metaphors that began:

When I was a baby my heart / was a tiny fish swimming / in a gargantuan sea of things to come.

When I was a toddler my heart / was a trout in a large lake of / thoughts and feeling.

Now my heart is becoming / a salmon ready to go to the sea / of the troubles I will have to face…

(from Heart of Water by Orion Misciagna)

John then passed the boy a yellow pad of paper, which he balanced against his leg, and a pen. In silence, the boy wrote:

If I was a book
I feel happy, caring
a story for people to read like an adventure

As people turn my
pages I feel glad
that they enjoy my
story as they rush
one page to another
I feel the wind
and the reader as emotion

And to the last page
the reader take his
last turn to my story
through the whole adventure
and emotion the reader
shuts the book and
I feel glad that someone
enjoys my story, my adventure.

“That just blew me away,” says John, who has worked with inpatients at Blythedale four times, for several days at a time. John, whose childhood included many hospitalizations and a surgery to amputate one leg below the knee, found writing therapeutic. He later trained to use poetry as a healing intervention with children and adults facing a range of health issues. In 2005 he founded The Institute for Poetic Medicine in Mountain View, Calif, a non-profit that funds projects and offers training and resources.

“One of the main things we want to do is honour a child’s voice and really let them know that their voice matters and is important, particularly in a setting like a hospital, where they could feel disempowered,” John says.

John works with children aged seven to 18—one-on-one or in groups of about seven.

He tailors his work to the needs of individual children and follows their lead, trying to inject a sense of playfulness and fun into the stressful hospital environment. John might ask a group “What are some of your favourite words?” then write them down on a board and work with the kids to make a group poem using these words.

“My tendency is not to go at things head on but through the creative process to allow things to unfold. Once that safety and trust is built, we get to the grittier issues the children are facing.”

A theme that often emerges is “I’m more than what you see,” he says. “The process is like a window opening up onto somebody” to reveal a rich, whole person that may be obscured by regimented days of treatment and therapy that focuses on what a child struggles to do.

“I remember one profound moment when a teenager with a degenerative illness who was on a gurney used an adapted keyboard to comment on a poem we were reading. Another young man said: ’I didn’t know you were so smart.’ He woke up to her being a real person with ideas he didn’t expect. These two teenagers were learning to listen to and respect each other.”

Even young children write in a revealing way. In a poem 7-year-old Madison writes:

Some hospitals tell me I can’t do something
After they tell me I can!
Then I feel BLUE.

A teenager with a painful condition that limits her movement wrote this poem after doing upper-body and arm dance-movements with a dance therapist mirroring her.

When we dance it feels like it’s a dream
I feel like I’m floating on a cloud
I forget about the pain.

“The cloud and dream are transcendent and a clinical person might say they’re good distractions,” John says. “But from a creative point of view they’re powerful images that can hold that experience of being free.”

Lisa Levinson, child-life coordinator at Blythedale, and her colleagues draw on these images to support patients through the rehab process. “We’re often able to support connections between our patients and images in ways that can bolster them mentally through treatment," Lisa says. "The brain focuses best on one thing at a time, so if we can help a pediatric patient connect with an image, this distractive element can affect their perception of pain, acting as an effective pain-management tool.”

John says a critical part of his work is follow-up over time by certified child-life specialists who work with youth on themes generated in their poetry. “It’s a gift to be able to work with child-life specialists because they know the kids so well and their trust in me helps the kids to have trust. I need to build a relationship centred on the child and let the child be empowered to guide it.”

John tries to make poetry accessible to all children, including those who can’t speak. “Often they have a way of indicating letters or a picture board or a voice device. But we try not to struggle too much. ‘What poem would you like to hear?’ Maybe there’s a poem we can read and that the young person can enjoy hearing. The idea is that each of us is creative and important and to respect and appreciate that.”

John says many adults would be surprised “by the powerful things that children have to say.”

In addition to working with children, John says poetry is a powerful medium for health-care students. He recalls reading medical residents a poem written by a doctor, about to retire, to his psychiatrist, after he had recovered from a bout of depression. Part of the poem goes:

…I credit half our success
To pear trees blossoming white
Beyond your left shoulder,

To the wisteria—
its pink flowers hanging
lush and fragrant
over the portico,
To the warmth of your hand.

(From Therapy, John Wright)

“One student raised her hand and said ‘What does that last line mean? That seems a bit extreme,’ with a real sense of consternation and confusion in her voice,” John says.

He explained that it referred to the psychiatrist touching the patient’s hand in a gesture of kindness and reassurance. “They’re not taught that those things matter,” he says.

“I try to get medical students to see a human being as a whole person, not just as Alex with cerebral palsy. To see that there can be a lot of surprises within someone, and to help them get out of the rut of seeing that person merely from a medical definition.”

John also works with parents of children with disabilities who are hospitalized. “So much of their concern and energy and focus is going to their child but they also are really in need of self-care and their voice is just as important. Sometimes I try to have them write about an experience where they take time out and recharge—maybe taking a walk in nature. I have to encourage them, letting them know that writing about what they really like won’t hurt their child.”

Some common themes that emerge in parent writing include “heartbreaking concern for their child, weariness, and a real deep faith in their child or in their love for their child,” John says.

Resources:

Poetic Medicine, 2002, John Fox

You Hear Me? Poems and Writing by Teenage Boys, 2001, Edited by Betsy Franco

Things I Have to Tell You: Poems and Writing by Teenage Girls, 2001, Edited by Betsy Franco

Chill and Spill, A Place to Put it Down and Work it Out, 2005, Steffanie Lorig, Jeanean Jacobs

My Words Consume Me: An Anthology of Youth Speaks Poets, 2003

Rip the Page: Adventures in Creative Writing, 2010, Karen Benke

(all of these books are available on Amazon)

Read Lisa Levinson discuss the impact of poetic medicine from a child-life perspective: Bringing poetry as healer to Blythedale (scroll down to story)

John and children from a children’s hospital in Florida were included in this PBS documentary called Healing Words: Poetry and Medicine

Wednesday, January 16, 2013

A different kind of doctor

I'm excited to attend the book launch of The Memory Clinic tomorrow night.

This is the book I referenced in my post yesterday about loving kindness. It's by Dr. Tiffany Chow, a neuroscientist at the Baycrest Rotman Research Institute in Toronto who works closely with people with dementia and their families in The Ross Memory Clinic.

It struck me reading her stories that Dr. Chow is able to be truly present with her patients and their families through their darkest, most vulnerable moments.

She writes about how this ability to sit with people, when there is no remedy to offer, challenges physicians:

"Sometimes we can't just listen, out of aversion to tragedy. Aversion makes us want to turn away from the painful story. Some people who cannot listen with compassion are often reminded, "It's not all about you!!" This is an important point for physicians to remind ourselves, because the way the medical system is structured does revolve around us, especially in Canada where there is a doctor shortage. It does look like it's all about us. The patient waits for an appointment to see us. We went through a lot of training to be repositories for knowledge, and patients come to us with questions. It's easy to romanticize the scenario into families climbing the mountain to reach us and hear our wisdom at the summit. It runs counter to most physicians' worldviews to admit that they don't have a cure or better news."

Earlier she writes: "Sometimes a patient's family doesn't want me to problem solve; that is a distraction from compassionately acknowledging their situation...Stillness can bring kindness and peace to those nearby."

Based on a visit to Alaska where Dr. Chow explored Haida Indian culture, she shares an alternative vision of how doctors can work through their own issues to get to this place:

"In one gorgeous explanation of how a Haida shaman would diagnose a villager's problems, the shaman would paddle her canoe out to the kelp forest, in preparation for a swim to the sea bottom. Once at the bottom, she would request a visit with the Sea-Witch, whose hair, like the longest strands of kelp extending to the ocean's surface, was invariably tangled. The shaman would soothe the Sea-Witch by combing and untangling this impossible hair, and the Sea-Witch, lulled into cooperation, would divulge the reason and cure for the ailment up on land. The lesson was that helping others would require thoughtful observation, journeys of discovery, and an ability to brave unpleasant or downright frightful situations. In a medical context, this can translate to working through the aversive reaction in order to make oneself fully present and available to someone in need."

I think these concepts are equally valuable for rehab professionals working with children with disabilities and their families. Louise

Tuesday, January 15, 2013

My loving-kindness project



We bought these candles for our farm. Everything we bought for the farm had a story. We had an elegant, cream wrought-iron and marble lamp that had previously graced a funeral parlour; a 19th century, hand-made kid's bed with ropes to support a mattress instead of a box springwe bought it on Craigslist and the owner's father had slept on it as a child; an inverted tulip lamp from the set of the movie Kit Kitteredge: An American Girl (a local antique store was run by a prop designer); and a knotted harvest table with built-in drawers from an auction where I ate the most exquisite piece of homemade carrot cake. None of these things was expensive. But they each involved an outing, an adventure, and a story.

We sold the farmfurnishedin 2010 when Ben was struggling through months of rehab. Only D'Arcy got to say farewell, bringing back one van-load of items that included the lamps and candles, some pictures and mirrors, dishware and cutlery.

Last week we picked them up from storage and suddenly there are farm memories in our midst.

Ever played Scrabble by candelight? You must try it. It's wicked.

Anything is made special with candles: meals, even homework or curling up with a book.

At the farm we had more time to enjoy the beauty of simple things like lit candles and giant pine cones and country flowers we used to adorn the table.

Now I'm lighting these candles every night as part of something I'm calling my Loving-kindness project.

A couple of weeks ago my eyes fell on this book in a display of new hardcovers: The Memory Clinic: Stories of Hope and Healing for Alzheimer's Patients and Their Families. It was the words 'hope' and 'healing' that intrigued me. I flipped to the back and read: "Although dementia is caused by some relentless brain disorders, there is meaning—sometimes even joy—to be found through the experience of it..."

Whoa.

That's a radical description for one of the most dreaded illnesses of our time. And from a neuroscientist? Dr. Tiffany Chow, a behavioural neurologist and senior scientist who runs the Ross Memory Clinic at Baycrest here in Toronto, wrote the book.

And yet her comment resonated with me, a parent of a child with disabilities.

We find great meaning and joy in raising our childrenyet outsiders devalue them and consider our family situation tragic.

I bought the book.

The Memory Clinic is a practical guide for families of patients and caregiversfrom how to stall the onset or progression of dementia through diet, exercise and brain plasticity, to how to support spouses or adult children caring for family members who are losing abilities or have unusual behaviour.

What I didn't expect to find was a description of how the Buddhist practice of loving kindness is key to caring for people with dementia—whether you're a family member or professional.

"Loving kindness is the practice of helping others to feel safe, loved, healthy, and at ease," Dr. Chow writes.

For patients with moderate to severe dementia, Dr. Chow recommends caregivers work with their loved one on this simple list of daily goals:

To feel safe
To feel pain-free
To participate in a meaningful activity
To feel loved

She notes that these goals are an application of the Four Intentions of Buddhism, which she addresses before discussing more traditional drug or behavioural treatments.

In a description that reminded me of how parents like me can get tied up in 24/7 'fix-it' therapy with our kids, Dr. Chow writes: "I will frequently prescribe time for the caregiver to let go of the nagging, quizzing, coaching role, in order to achieve a sense of calm stillness with a loved one. I can't imagine how awful it would be to see dismay over my every failure on the face of a companion."

I've often wondered in retrospect how it felt to be my son Ben, urged and cajoled to speak by me, therapists, school teachers and assistants, friends and family, when he simply didn't have the mechanical ability. For years!

How would it feel to always be put in a position where you can't be successful? To have the focus put on what you aren't, instead of what you are—when what you are is a rich world waiting to be seen and accepted?

Last night I sat beside Ben on the couch. He was watching Jessie in Toy Story recount her sorrowful story of being abandoned by a child who grows up.

"Is this the sad part?" I asked? He nodded. Then he leaned in close so I could feel his body. I just sat there, enjoying the warmth. At the end of the day, is there anything more important in life?

Another gem offered by Dr. Chow: "To experience joy and love does not require perfect cognitive function." (Or any other ability or physical characteristic, I would add!)

Much of The Memory Clinic is about helping caregivers look after themselves. "Extending loving kindness toward oneself is one of the most vital survival tips I can pass on...," Dr. Chow says. "It trumps teaching... how to pronounce the generic names of medications."

She notes how caregivers are exceedingly hard on themselves (bingo—doesn't this ring true for parents of kids with disabilities?)

She stresses that respite and self-care (including exercise, healthy eating, strong social ties and interests) are essential in allowing caregivers to ride the ever-changing journey they're on.

I've been feeding my worry recently with overeating of homemade cakes with butter icing, chocolate-covered almonds and the like. A few weeks ago while riding the hospital elevator a woman asked me: "Are you pregnant?" This sent up a red flag.

Dr. Chow recommends a Mediterranean diet as a way of reducing the risk of Alzheimer's, so I went and bought a cookbook of Greek recipes—many of which are for fish.

Last night I made a roasted fish dish with cherry tomatoes, red onions and white wine.

I thought it was very tasty.

"Please don't include me as a candidate for further explorations in this area," said D'Arcy, after taking a couple of bites.

The front door slammed.

"Mom, I HATE fish! Why did you make fish?"

"Just try a tiny piece. It's different, you might like it. And it's good for you."

Stomp, stomp, stomp. Backpack hitting the floor. Pot banging on the stove. Frozen cheese tortellinis—ping ping ping—being dropped in the pot.

Ben, however, was quite enthusiastic and finished his plate by signing "good" with great relish.

In addition to the new cuisine, I've gone to the club two days in a row now and resisted my daughter's baking. Bought a pack of cards for more letter writing. And have my eye on a play.

Last night I surprised myself by saying: "Today was a really good day."

And as I bobbed around the kitchen this morning, laughing at things on CBC Metro Morning that seemed oddly funny (but only to me!), D'Arcy turned and said: "I know you're trying to be happy. But it's a little annoying."

I think parents of children with disabilities have a lot to learn from families caring for people with dementia and vice versa. As Donna Thomson, author of The Four Walls of My Freedom often says, we need to speak as one powerful caregiving voice.

Loving-kindness project Day 3. Here I come!

Monday, January 14, 2013

What I learned from Melanie and Tommy



By Sarah Weinstock

I was really looking forward to seeing the BLOOM talk called Let's talk brothers and sisters that happened back in November. I knew that the family giving the talk had a daughter with special needs and a younger, typically developing son. Since I have the same dynamics in my family (two daughters, the older one with a genetic condition causing global developmental delay), I knew I wanted to hear their story.

The parents, Nathalie and John, helped their kids give a short presentation that explained their close relationship as siblings, their beloved pet rats, and how their lives are affected by Melanie’s syndrome and other people’s reactions to her. Then, they talked about how they dealt with Melanie’s syndrome as it relates to Tommy. They covered how they helped him to understand her challenges, how they comfort him when he’s upset about people’s reactions to her, and how they have worked to let him express his feelings about her and their sibling relationship (see the book they wrote here and their website here).

I reacted very strongly to this talk and I’ve been thinking about why ever since. I think it was mainly due to how open this family was. Obviously, a certain level of openness is expected if you’re standing in front of a group giving a presentation, but it was more than that. I really felt that this family is comfortable with how they are navigating life with a child with special needs and her younger brother. And they were willing to let all of us see that life with all its bumps and thrills.

When they moved on to answering our questions, they continued to let the audience in. And not just to the happy images of the two kids playing with their rat friends and the media attention that Tommy has received with his desire to tell people about his sister. They were just as comfortable telling us about the difficulties of raising a child with special needs: the heartbreak of hearing another child tease yours because she’s still in diapers and doesn’t know her ABCs or the attempts to comfort her brother who doesn’t understand the taunts he hears at school.

Nathalie made one particular comment that gave me such a clear view into the way this family has chosen to open up to those around them. She said that if Tommy ever came home upset that a child had made fun of Melanie, her first reaction is to tell him to invite the child over. That blew my mind! I think it’s so generous to understand that kids (and adults) often react negatively to a new and different situation out of fear or uncertainty rather than out of malice or cruelty.

Instead of retreating from the negative feelings of others, Nathalie’s instinct is to lean in, and believe that being open and welcoming will help her own children as well as those who might not know how to behave around those who are different. And that approach has succeeded, as kids have reacted positively to Melanie when they see her at home with her family and get to spend some time with her and Tommy together.

To see their mother respond that way is so rewarding for Melanie and Tommy. They’re learning to let people in, to teach and offer people new experiences rather than resent those who don’t understand a different kind of family.

It's tempting to look at what this family has done as a blueprint. I thought to myself, “If I write a book with my younger daughter about her older sister, then we can tell other people about it and help them learn that children with special needs are such special siblings, etc.” But, in fact, what Nathalie and John did was listen to what Tommy wanted and help him express his feelings about Melanie in a way that made him feel comfortable and powerful. I look at my younger daughter, who's only just three and doesn't even know that anything is different about her older sister, and I wonder how she'll react when she hears others comment on her big sister's difference. She'll have her own way of expressing how she feels about living her reality and, whatever it is, we'll be there to help.

I hope to be as open as Nathalie and John have been with their kids and those around them. I think about it almost daily, how I'd like to model that kind of generosity and belief that people tend to surprise you when you give them the chance.

We face an uncertain future – about my older daughter’s life, how she’ll exist in the world, how others will react to her, and how all of it will impact her sister. But I can always choose to focus on some certainties: the love and support we’ll give our daughters no matter what, and our option to remain open and trusting. I’m grateful to Melanie, Tommy, Nathalie and John for reminding me of that.

Sarah Weinstock (above with Rae, left, and Willa, right) is a family leader at Holland Bloorview.

Friday, January 11, 2013

In Mary-Ann's 'ark,' diversity is welcome



By Megan Jones

Mary-Ann Nova (front right) steps into her miniature jungle cat’s cage the same way as always: holding a dog dish filled with a fat-laced slab of chicken. Her 40-pound caracal Sassi—a lynx-like cat that fells small prey with a swift five-metre leap and a bite to the neck—is perched, hissing, on a platform above.

Pressed against the cage, about 25 children stare, their fingers intertwined with the structure’s chain-link fence, trying to get as close as possible. To one side, miniature pigs squeal and crash into their pen’s walls. To the other, a young woman clutches a three-foot bearded dragon to her chest like an over-sized, amphibious infant. Still, all eyes remain fastened to Mary-Ann and Sassi.

Mary-Ann ignores the hissing. She lays the dish down, steps back and absentmindedly twists her tangerine-orange hair into a bun. Sassi descends and circles the food before eating. After she tears the last piece of meat, Mary-Ann makes contact and Sassi melts into a seated position while her owner strokes her back.

“Some people are just like Sassi,” the 57-year-old explains to her audience. “They’re very anxious at first, so you need to learn how to approach them carefully, at their own pace.”

Not one word is ignored. Mary-Ann’s voice doesn’t just calm, it mesmerizes. Some children in her audience have disabilities and are accompanied by volunteer mentors. Others are typically developing. But they’re all absorbing the same inclusionary lesson in Mary-Ann’s backyard through a program called Nova’s Ark. Mary-Ann’s been a bit of a misfit her whole life, but here, she’s found her calling.

Nova’s Ark is a day camp designed for children and adults with special needs. On any given day in the summer, there are about 15 to 20 children and young adults visiting Mary-Ann’s property.

The camp caters to children with a range of disabilities. Over the past 10 years, Mary-Ann has collected more than 60 different animals from rabbits and turtles to hawks and kangaroos. She builds her programming around the animals, using the critters to bring campers together. “Some children may have trouble socializing or relating, but when they see these animals, it starts a conversation,” she explains. "The animals are something everyone can relate to.”

It isn’t what Mary-Ann intended to create. In 1998, she left her Whitby, Ont. subdivision and moved about 10 km north with her husband, Geoff, and son, Kyle. They settled on a 10-acre property in Brooklin, Ont.

Mary-Ann, then principal at Sir Samuel Steele Public School and former special-needs consultant for the Durham District School Board, bought two horses and some house pets. She wanted to use them to provide alternative summer programs for a few children with severe developmental and physical disabilities who were friends of the family.

Mary-Ann was discouraged by the existing school education available to kids with special needs. She felt students were unfairly subjected to one-size-fits-all standards of success. If kids didn’t fit the model, Mary-Ann says, they were given up on.

She was familiar with the feeling: Mary-Ann has a learning disability that makes it difficult for her to understand written information. Growing up in Selkirk, Manitoba—about 20 km north-east of Winnipeg—she struggled academically. In elementary school she was called unintelligent by teachers. As a teenager, Mary-Ann says she was told she’d amount to nothing “except maybe get married and have some kids.”

Mary-Ann was a farm girl, and found barnyard animals like pigs and horses comforting. As an adult, she started believing they could be used to teach empathy. She saw animals as catalysts for bonding between humans.

Mary-Ann started small: about five kids each summer and on weekends. She gathered volunteers—mostly teenagers from unstable family backgrounds or those who were struggling academically. She wanted to give them chances to thrive. At the same time, she collected increasingly exotic animals, working up from guinea pigs and goats to a python and zebras. Many came cheap: they’d been abandoned at birth or abused by breeders.

In 2004, Nova’s Ark became a registered charity. Soon, Mary-Ann had amassed an army of over 60 part-time volunteers. In 2011, she left the school board—abandoning a six-figure salary and nearly her full pension—to build Nova’s Ark full-time.

Mary-Ann admits that growing the program was challenging. She and her family share everything with Nova’s Ark—their time, labour, even their living space. “There’s always something in the house,” she says. “We’ve had a play pen in our bedroom with a baby wallaby. We’ve had a capybara that spent evenings on the couch watching television with us. In the winter we open up the deck-room door and the lemurs come in and sit in front of the fireplace or on our shoulders.”

Geoff, who’s “not an animal guy,” sometimes gets frustrated, particularly when she makes decisions without consulting him. Once, the former General Motors executive went away on business and returned to a five-foot tall baby camel on his couch. Another time, Mary-Ann sold the dining-room set while he was gone, and began converting the space into a parrot room. Still, she says, “When he sees our children with special needs or hears from the parents and sees how happy they are, he understands.” They have been married 35 years.

The Novas also faced financial stress. In the three years before Mary-Ann quit her job as school principal, they contributed about $100,000 of their own funds annually to the program. When Mary-Ann no longer collected a salary, they used their savings. Nova’s Ark can’t secure government funding because the program doesn’t fit squarely into existing application categories. But corporate and private sponsors—like Home Depot, FreshCo and Autism Ontario—have come through. This April, after 15 years, the Nova family was able to stop contributing, relying solely on sponsors for funding.

Mary-Ann only accepts campers with disabilities into the program, a choice she plans to stick to.“The campers who come to see me are always being told to wait, always being pushed to the back of the line,” she explains. “There are lots of opportunities for [other] children. I wanted to create a space for children who need this most.”

Sometimes Mary-Ann lets other day camps—mostly made up of typically developing kids—visit her property for the day (for example, aToronto day camp is in attendance during Mary-Ann’s lesson about Sassi). When other camps come, the visiting children are encouraged to interact with Mary-Ann’s campers. This way, she says, both groups learn from each other.

Once Mary-Ann finishes feeding Sassi, her audience disperses. She moves to her porch and watches children choose their activities. This part of the day is deliberately unstructured: Mary-Ann believes that kids with disabilities shouldn’t be bound to rigid learning schedules. Instead, she gives campers charts with activity options—trampoline time, spa activities, crafts, discovering animals—and allows them to decide their own schedules at their own pace with the help of volunteer mentors.

It could be chaotic, but under Mary-Ann’s ringmaster-like watch, it’s calm. “Over there are Connor and Sierra,” she says, pointing to a boy with autism and a girl with cerebral palsy. “Some people may say that I’m very crazy and that I’m very eccentric, and they can say that, but just look at this.” Connor and Sierra, along with their mentors, lead two donkeys across the lawn. “And look,” she says, “here comes our bearded dragon.” This time it’s led on a leash. Close by, some children swing from a tire attached to a tree. Others use oversized wands to make large, clumsy bubbles.

Three days to see

Thursday, January 10, 2013

Take a look at yourself, and then make the change

A commenter on Paul Austin's response yesterday said that it was clear I had misinterpreted the frustration expressed by some parents.

I don't believe I did.

I did feel the same discomfort when I first read Paul's piece. As the parent of a child with intellectual disabillity, I have a strong radar for depictions that suggest a person like my son is less than human. When I felt those pangs of discomfort –  the first being where Paul pinches Madison to try to get her attention and likens her eyes to those of an animal caught in a trap –  I wanted this story to be tied up neatly at the end with an epiphany. I wanted this doctor to come to a place where he clearly sees that as humans we are all fragile, and we are equal in our fragility. I wanted him to understand that expressing pain isn't an indicator of being less than human. If anything, it is what makes us human. It is what makes us capable of empathy.

However, the more I read the piece, the more I read irony and bravado into Paul's thoughts. He's trying desperately hard to build a case for why his daughter is better off than Madison, mentally cataloguing each comparison. Yet the more he insists his daughter is both different from Madison and invulnerable, the less convinced he seems. That line from Shakespeare's Hamlet came to mind: "The lady doth protest too much, methinks."

And then I thought about how stereotypes are transmitted through a culture, so that no person (except perhaps a baby or young child) is immune.

I thought about how I'm part of a culture where stigma against people with disabilities is deeply rooted – in all adults – not just people outside the disability community.

I thought about the French study last year that showed that stereotypes exist at the unconscious level – so that one can be surprised at thoughts or feelings one has that don’t line up with one's stated views. "Where did that come from?"

In the study linked to above, researchers found positive explicit evaluations of children with Down syndrome can co-exist with negative associations at an unconscious level, revealing hidden stereotypes.

In other words, people who say and believe they are accepting of children with disabilities – even, according to the study, caregivers who work with people with intellectual disabilities – can carry the same dark stereotypes you would expect in the ignorant, but in an automatic way they're not necessarily aware of.

I thought about how these stereotypes are within all of us. It's not a matter of parents who are "enlightened" vs. those who aren't, or parents vs. the outside community. These stereotypes are socialized into our collective consciousness. That's why we can so easily trot out the negative attributes commonly associated with people with intellectual disability. It's no secret because we were raised with these ideas.

What is disturbing is that people who don't acknowledge their own connection to these stereotypes may not even be aware that they operate at an unconscious level. When I asked the lead researcher of the study above if we can be trapped in automatic stereotypes handed down to us by our predecessors, she said: "As long as we don't know about them, yes."

Only, she said,  if we have self-awareness, can we "choose to change stereotypes, to struggle" to free ourselves from them.

I can recall times during my son's life when I've had thoughts that are fed by our culture's discriminatory values against disability, and against particular types of disability.

I remember when my son was diagnosed at three days that I took comfort in the fact that his rare genetic condition wouldn’t immediately mark him with the features associated with Down syndrome.

Before his intellectual disability was diagnosed, I went to great pains to tell people that “mentally he’s fine” – knowing that in our culture, people with limited intellect are not valued as much as those with high IQs.

I feared what life would be like if my son was indeed intellectually disabled. My conception of what that meant – based on my ignorance – didn’t match up with my beloved, charming, curious little boy.

When I received his diagnosis at age 11, I wept inconsolably, knowing the stigma my son would face.

I thought about times in which, like Paul, I've compared my son with other children, with my son coming out on top. But I now see this as a last-ditch coping mechanism and not a position of strength.

It’s similar to when I hear about a horrendous incident on the radio. I might say to myself: "Well, at least I’m not dealing with that." Is that a charitable thought to have? No. But during a stressful period it may give me perspective.

I know that at vulnerable times when I have found myself tied up in mental knots about my son's disabilities – one in which I might fall prey to trying to convince myself that my son is better off than another child – that this does not reflect my sense of superiority but the exact and utter OPPOSITE.

It reflects my deepest insecurity, vulnerability and anguish. I've been reduced to trying to prove to myself that my son is valuable – something that in a saner moment I would know to be immutable.

I know how tempting it can be when writing to censor out thoughts or feelings, to present the "next-generation" Louise –  the one who doesn't carry any of our cultural baggage about disability. Why not just wipe the slate clean?

But when I see the dialogue sparked by Paul's piece and the follow-up posts, I believe it's a good thing. I don't believe we're better off pretending that as parents we've never had stereotypical thoughts flit through our heads, even gain some traction. If anything, I think we need to talk and talk and talk about this. And not just amongst people in the disability community. But broadly. We don't change stereotypes by mandating what people think or feel, and castigating those who don't measure up.

(Of course, we can legislate and enforce how people act!)

It makes me think about how I used to be on the alert to catch anyone not using people-first language – convinced it meant they were demeaning people with disabilities (whether they had even heard of the people-first concept or not).

And then over time I realized that someone could use people-first language and still be incredibly patronizing. On the other hand, someone could "put their foot in it" with language but be genuine.

Recently, adults with disabilities are speaking up to say that they should be able to choose how they'd like to be referred to: "I'm not a person with a disability, I am a disabled person" writes one young woman. And a colleague of mine who has a disability asks: "Why do people without disabilities decide what I'm called?"

Pediatric rehab researchers have begun using the term "disabled children" to refer to children who are disabled by their environment and public attitudes.

But without open discussion, we might not recognize this new meaning. "They just don't get it," we might sigh, shaking our heads.

I'm for bringing things out into the light of day. We all need to hold the mirror up and take a close look at our attitudes.

And I say that knowing how disappointing it is that we're not somehow above our culture, its values and stereotypes – but rather, a product of them.

If you're as old as I am, then you know that the headline is a line from Michael Jackson's Man in the Mirror.

Wednesday, January 9, 2013

In praise of honesty






















By George Estreich

Last year, I wrote a piece for BLOOM called Why pictures matter. It’s a short essay about an insensitive ER doctor, and its occasion is a picture I came across on the Internet. It showed a teenage boy who’d had a bad fall, and who was bruised and disoriented. The ER doc had snapped the pic and posted it on his blog, not only violating the boy’s privacy but also—in my view—dehumanizing him, by putting him on display.

I thought of this after reading Paul Austin’s recent piece, also published here. In that piece, Paul, a physician, describes attending to a young woman with Down syndrome in the ER. Because he compares the woman unfavourably to his own daughter (who has Down syndrome), and because he seems to suggest that the woman’s humanity is absent or lost, you’d think I’d agree with the comments criticizing him. But I can’t do it, because I think that the writing is powerful and valuable. To me, it’s raised a really useful conversation about why we write about our kids, and what for, and what sorts of feelings we’re willing to welcome, and most of all, how we make sense of what we read.

Full disclosure: I know Paul (met him at a conference in Iowa). I’ve read an early version of the manuscript he’s working on now, and it’s fair to say we have very different senses of what it means to have a daughter with Down syndrome. For one thing, Paul’s a lot further along than I am—his daughter’s an adult, and mine’s 11—and for another, Paul is one of those few guys whose publicly stated inner turmoil makes mine look kind of mild. There were things that troubled me in Paul’s manuscript, and I said so to him. (I’m pretty sure that, in doing so, I ruined his week in a big way.)

But I made those criticisms in friendship, and as one writer to another, and as a fundamentally constructive act: that is, in hopes that the criticisms would lead to something better (in this case, a revised book). None of those criticisms, though, were horrorstruck condemnations of his character. It’s been troubling to read the comments section, particularly the bits that attack Paul personally, and though Paul has responded in his own post, I feel I have to speak up. Paul's a deeply decent man. He’s one of us. He proudly showed me texts from his daughter while we were chatting together, and that was truly moving to me: all of us with younger kids have the future in the back of our minds, and often in the front, so to see texts sent in real time from a real adult with Down syndrome gave me hope for the future. (Worries for the future, of course, are the subject of Paul’s piece.) In any case, the idea that Paul is a stereotypical Heartless Doc is categorically false.

That’s not to say there’s nothing to talk about. For me, the excerpt published in BLOOM walks right up to the line, and probably stomps on it a little bit too. I was uncomfortable, reading it. But I’m okay with that: the best writing ought to make us a little uncomfortable, and literature is about the mysteries that are not only unresolved, but perhaps fundamentally unresolvable.

In any piece of writing, context is crucial; and the overriding context of this piece is a man seeking to illuminate his own contradictions, as amplified by crisis. It’s memoir, and should be judged as such. If Paul were a clinical geneticist arguing that all people with Down syndrome are less human and therefore should be screened for, I’d be the first to reject his argument. But he’s not: he’s a writer of nonfiction, and as such he’s not advancing a proposition, but trying to capture the complex texture of experience. If as writers we truly value honesty wherever it leads, if we value—as I think we should—the uncertain and unresolved, then Paul's piece succeeds. And if we truly believe that our children are diverse, and that the families involved with disability are diverse too, then we need to accept the entire diversity of meanings that come from the experience.

What's most troubling about the excerpt, of course, is Paul's frank expression of distaste, and his relief that his own daughter is better off than his patient. I agree that this is troubling. But it should be noted that this is far from the first time that it’s been expressed. Marilyn Trainer, in her book Differences in Common, writes about the time when her son Ben began school at six. Trainer describes seeing older students at the school. It’s a long passage, but it’s directly relevant:

“Although Ben adapted quite well, I had a problem, and one which caused me considerable anguish and guilt. I’m not proud to admit this, but I found it very disturbing to see “older” kids with Down syndrome and older people with mental retardation in general. In fact, some of the students in their teens and twenties downright scared me when I thought in terms of the future. For one thing, I was bothered by their physical appearance. Some—particularly those with Down syndrome—were quite overweight. Others were extremely thin, and a few had very small heads and twisted limbs. Even more disquieting was how “out of it” many of the older students with Down syndrome appeared. They had a certain dullness of manner and facial expression that seemed so different from the high spirits that animated kids like Ben and his friends. I couldn’t help wondering . . . . Someday would Ben be like this too? I knew these feelings were not unique with me. I had discussed them with other parents who admitted reacting the same way.”

I don’t have a problem with Trainer’s writing, at all. To criticize it is to tell her she shouldn’t feel the way she did, or that she shouldn’t expose it to view. I don’t hold with either of those, as the first is absurd and the second is unreasonable.

In fact, on the issue of being human, I’ve always been far more troubled by a moment in Martha Beck’s Expecting Adam:

“If you’ll cast your mind back to high school biology, you may remember that a species is defined, in part, by the number of chromosomes in every individual. Adam’s extra chromosome makes him as dissimilar from me as a mule is from a donkey. Adam doesn’t just do less than a ‘normal’ child his age might; he does different things. He has different priorities, different tastes, different insights.”

I find this deeply problematic, not only because Beck’s biology is questionable, but also because she is implying that all people with Down syndrome are categorically different from all people without. She implies, in fact, that “they” are actually a different species, and that their “different” tastes and so on are actually a result of the chromosome. Not only is this very doubtful—tastes, FYI, are cultural—but it at least echoes some dangerous eugenic assumptions about human categories, and generalizes vastly about all people from a single child. It’s a useful contrast with Marilyn Trainer’s piece, or with Paul’s, both of which are rigorously focused on individuals, and which are rooted in the more difficult and mutable world of feeling. Both Marilyn Trainer and Paul Austin stay well away from generalizing about all people with Down syndrome—and Paul explicitly rejects the sentimental idea that a sweet character comes from the chromosome.

It should also be noted that the self-criticism leveled by Paul against himself is as harsh (almost) as anything present in the comment threads. I don’t think he’s trying to say that people with Down syndrome who are more severely affected are less human. I think—and here, the book’s title, and the ending sentence of the passage, are crucial—he’s saying that extreme pain threatens our humanity, no matter who we are. His pain comes from both identifying his daughter with his patient, and from resisting the identification—and from his awareness that that’s what happening, which is why he describes his own feelings in terms of perversity and shame. Those feelings are not presented as timeless biological truths. They’re presented as dramatic moments, and to make sense of them, you have to read the whole passage to see how the drama turns out.

The beginning of the piece draws a stark separation between himself and his patient, his daughter and his patient; but by the end of the piece, those distinctions have collapsed. In crisis, as he narrates, he shuts down empathy to work. In a quieter moment, he gives out his phone number, he opens his family to the family of his patient. What made the ending so moving to me was the quiet domesticity of the scene, which contrasts sharply with the controlled chaos of the ER. Ironically, in that very contrast, he sees the similarities between his daughter and his patient—and transforms his memory of the event. He actually wishes for his daughter to scream as loud as his patient, if that’s what she needs, and there’s an implicit recognition that that screaming does not lessen humanity, but expresses human need. Where he begins by wanting to separate his daughter from his patient, he instead finds commonality. Pain is what threatens our humanity, but pain is also what, as humans, we all share: everyone, Madison, Sarah, Paul, need something for the pain. It’s a powerful moment, and what makes it most powerful to me is the presence of Sally: she, in effect, gives him permission to feel what he actually feels.

I think this is something that readers should grant writers, even when we dislike what we see there. The alternative is to restrict the kinds of honesty that we are willing to welcome—and, by extension, to decide who is positive enough to belong to a community of parents. None of us, I think, is hurt by frank discussions of being conflicted. What hurts us, as parents of kids with Down syndrome and other disabilities, are generalizations that treat all those kids as the same—and an insistence that our accounts be finally celebratory or positive. Because if being positive becomes a requirement, then it risks becoming oppressive too.

George Estreich lives in Oregon. The paper and e-book editions of The Shape of the Eye, his memoir about raising a daughter with Down syndrome, will be out from Penguin this April.