The player

There is a tall, gangly teen on the basketball court outside my window.

He carries his right forearm up, his arm bent at a 90-degree angle against his body, his hand partially fisted. Sometimes that hand flaps.

His whole right side is stiff, it doesn’t move the way his left side does.

He bounces the ball with his left hand, shoots with the strength of his left arm and hand alone.

Sometimes after sinking a hoop he claps jubilantly.

He keeps shooting. Over and over and over again. From close up and far away. He lopes exuberantly around the court, unbothered by the unevenness of his gait.

He doesn’t give up.

When he leaves he walks past my window. I wave and he waves back.

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The trove of other mothers

Sandra Stein’s life was upended when her healthy toddler fell ill with an autoimmune encephalitis, a condition in which the immune system attacks the brain, and was hospitalized for 15 months. In this poem, Sandra invokes and honours the many other mothers she has met in hospitals and in cyberspace who every day are caring for children with complex medical needs.


The trove of other mothers
By Sandra Joy Stein

I.
Cradling her son
As his body thrashed
Legs like iron rods.

Try to bend them, honey,
Tell your legs what to do,
They’re your legs.

It will pass, she said, again.
It always passes.

After minutes or hours—she was never sure,
He calmed. Curled. Gazed into the void.

She gazed too.

A giant tear startled her, when it fell on her arm.

Was that his tear or hers?
She preferred not to cry while holding him.

Then another tear, this time most definitely hers
And another.
And another.

He was limp, motionless, breathing, heavy in her arms.

She surrendered.

More tears. Her arm now wet.

He fell asleep. So peaceful. So beautiful. If you didn’t know, you wouldn’t know, she thought. She loved to stare at him while sleeping.

Rest, she said, her palm to his cheek. You rest.

She called out—no, not to some doctor or deity—she called out to the trove of other mothers who at this very moment were, like her, cradling sick babies, and grown babies, and limp and lifeless but very much alive babies.


II.
From behind shadows and tucked away spaces and homes-made-hospitals and hospitals-made-homes
Their forms emerged
Weathered hands, kinked necks, crooked backs, heavy eyes, furrowed brows.
They looked right at her in a way that no one had since…

We see you.
We feel you.
We know you.
We are you.

Like a somber gospel choir they swayed and sang,

No, sister, you have not failed
No, sister, this is not fair
No, sister, you are not alone
Never alone. Never alone.


III.
She blinked back to her sleeping son.
Her arm, now dry, she dug
deeper, yet again.

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Let's play 20 questions

By Cheryl Peters

Last week with my daughter Jillian at my side a store clerk asked: "Can I ask what's wrong with her?" Seems like an honest question, right? When you're raising a child with a disability, you'd be surprised at the questions that are lobbed in your direction. Normally they're innocent, but whenever we go out as a family, we're regularly asked a barrage of questions.

My daughter Jillian is five-and-a-half years old (above right). A little spitfire of a little girl. I always knew she was paying attention whenever I answered these questions but what I didn't know was that she would take matters into her own hands.

Last week my husband was due for a phone upgrade so we headed to the mall. Jillian is enjoying independence in a chair she can self-propel. She was full of giggles and laughter as she threatened to run away from us. When Jillian was within earshot, the agent at the phone kiosk looked at me and said "Can I ask what's wrong with her?"

"...You could..." I replied. It was then that Jillian decided to speak up for herself. "What's wrong with you?" she asked. I wasn't sure how to proceed. Surely I should apologize for her, or do I? The question was posed innocently, so why did I feel embarrassed? Jillian had a point.

The agent at the kiosk said "I deserved that." So I was left wondering what do I do about this? On one hand, I'm so proud of my little girl for standing up for herself. On the other? I really would have hoped she would have picked up a little bit of manners to answer these questions.

It's times like these that I'm reminded Jillian is only five. Children at that age have little filter. I should know, I also have a typically developing older daughter, Lauren, and at seven she's just now realizing about filters.

I'm proud of Jillian for realizing she can stand up for herself. Maybe she'll show people that they shouldn't assume things about children in wheelchairs or children with disabilities in general.

This isn't the first time Jillian has been an advocate. At the ripe old age of three-and-a-half she was involved in the Children's Advisory Council at Holland Bloorview. We learned there that she never went into the ball pit because she didn't want to ask for help to get in and out. I had just assumed she didn't use the ball pit because she didn't like it. I realized I shouldn't make assumptions about her either. Because Jillian spoke up, there are now foam steps and wedges that allow kids like her to crawl into the pit on their own.

Did I handle the above question correctly? I'm still left wondering about it. In the mean time, I'll be proud and explain to Jillian that maybe next time, we could be a little bit more polite and understanding when people are asking questions.

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They are us

Last year I heard Dr. Paul Browde speak about how marginalized people are often reduced to one story, one stereotype, one dimension.

Browde is a psychiatrist and assistant clinical professor at the New York University. He's also HIV-positive. Decades ago, as a newly qualified psychiatrist on an AIDS hospital unit, he remained silent in a meeting when a doctor referred to patients as SHPOS: "subhuman pieces of shit."

It was a few years before he shared his diagnosis and his story, first at a presentation at the American Psychiatric Association, then with his colleagues, and, when helpful, with his patients.

Browde, speaking at an international conference on the use of storytelling in health care, said a good life is one that can be richly described, one about which many stories can be told.

But, there are people "whose lives are reduced to one story, or a few habitual ways of describing their lives," he said. "I saw this particularly in people with intellectual disabilities who are reduced to the story of a diagnosis or of being disabled."

We don't allow these folks to have many stories.

Case in point. Last Thursday, at a meeting to discuss neighbours' concerns about police and emergency calls to a new Etobicoke group home for teens with autism and learning and emotional problems, including depression and anxiety, Councillor Doug Ford said: "You've ruined the community." 

He asked Griffin Centre, the agency operating the home, to relocate the teens, saying "no one told me they'd be leaving the house." He also asked whether any of the youth were sex offenders (they're not). A neighbour said: "This is not a place for mental patients."

Bingo. That tired old story about kids who have autism, kids who have mental health issues, kids who have disabilities. Kids who are different, kids who Ford says aren't us.

As a medical student, Browde says he was trained to think of physicians as invulnerable. "Until my own diagnosis, I viewed illness as something that happened to others."

Dr. Browde said it was his narrative therapy training that led him to see the clinical value of understanding "what it means to be a patient...You could call this empathy. The ability to imagine being in the shoes of someone else."

Empathy. Yes, that's what was so lacking at Ford's meeting to discuss the group home.

Memo to Councillor Ford: Youth with autism are our brothers and sisters, our family members, our friends. People with depression and anxiety are us. I've had severe clinical depression. I have a son with disabilities. Why, you yourself have a brother with an addiction, which is a mental illness according to the American Psychiatric Association's diagnostic manual. 

We have a few group homes here in my neighbourhood of Riverdale, and our property values are rising, not falling.

Why didn't you go to that meeting and ask the Griffin Centre staff to share stories about the teens who live there? Not their clinical diagnoses, but who they are as people, what they enjoy in life, what their hopes are? 

Why didn't you organize a meeting where the staff could educate the homeowners about autism, mental health issues and developmental disability?

Why didn't you ask the neighbours to work with Griffin Centre and the youth to make the teens feel welcome and worthy rather than feared and despised? 

Why didn't you ask the neighbours to call the Griffin staff directly when they have a concern?

Why didn't you ask the neighbours to be patient as this new home goes through its growing pains, in the same way you expect the citizens of Toronto to have compassion for our mayor?
 
Why didn't you allow those teens to be more than a stereotype?

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Where everybody knows your name

By Louise Kinross

Ben's done an amazing co-op program at Variety Village this year. He works at the club two to three days a week, cleaning equipment in the cardio room, counting inventory and helping members get set up on machines.  

Anyone who's been to Variety Village knows it's an exceptional place. There's a sense that everyone belongs: young and old, those who walk and those who wheel, those who speak and those who don't.

Today I went to visit Ben because he was having an assessment with a physio. I noticed as we walked around the track (he on bike) and through the halls that people stopped to recognize him. A guy in a wheelchair held up his fist to bump Ben's fist. Another one gave him a high-five. I was introduced to CEO John Wilson and he shook my hand and thanked me for Ben's contribution. Even an older gentleman who was walking around the track knew Ben.

Ben was relaxed and knew his way around. Did I say Ben was relaxed? Incredibly relaxed. He smiled while riding the bike. As we put it away he showed the physio and I one of the hand-powered bikes and signed that he wanted to try it too. Then he took that one all the way around the track as well.

This surprised me. For the last couple of years Ben's done very little exercise. We've struggled to find something that he can do and enjoys.

The only bike that ever worked well for Ben was an adaptive bike he used while an inpatient here at Holland Bloorview. He loved cruising around the halls and it gave him a great sense of freedom.

I wanted to get him one of his own—until I learned that it cost several thousand dollars.

I couldn't understand why it was so expensive, because the parts all seemed to be standard ones that are mass-produced. Welcome to the world of "specialized equipment" and its inflated price points. We'd tried to adapt regular bikes ourselves but without success.

Today I began to see how Variety Village's physical design and accessible equipment and welcoming culture made it easy for Ben to enjoy exercising.

The physio said an adapted bike would be wonderful for Ben. She also told us about personal training offered at Variety Village. The club isn't close to us, but I began to see how much it's worth the drive. Maybe my family could start working out there.

I've had some disturbing personal reminders recently of how unwelcoming people and places can be to people who are different.

A few weeks ago, Holland Bloorview life-skills staff presented findings of a review of 56 studies on friendship for youth with disabilities. Research shows that in general typical peers interact in a superficial way with disabled youth.

I get that. I see it.

And that's why I don't take anything about Variety Village for granted. What they've created is priceless.

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'Why do you love Jacob more than us?'

The Boy Who Can is a story about my friend Marcy White’s perseverance, creativity and courage in the face of her son Jacob’s life-threatening genetic disorder. The book begins with this “Letter to my Daughters,” Marcy’s twin daughters Sierra and Jamie (all above) who are not affected. It describes the natural hurt siblings can feel when so much of their parent’s time is taken up attending to the child with disability. An important message for all of us. Thanks Marcy!

Dear Sierra and Jamie:

You are too young for me to share this with you now but one day, when you are older, I will tell you how my heart hurt when you asked me why I loved your brother more than you. Your questions caught me off-guard and I’m not sure I expressed myself properly. I desperately need you to know that it is not true.

Being a parent is a constant juggling act, there are always so many balls in the air at risk of falling down and crashing to the floor. Parenting in a household with a “differently-abled” child like your brother is even more of a challenge, simply because his needs are different.

Jacob can’t speak so he doesn’t ask me to play with him. You do. Sometimes I feel guilty for spending more time with you, my mobile and verbal twins, than I do with your brother, who is dependent on others for absolutely everything.

I struggle with balancing my time between all my children. I am constantly asking myself how I can meet your needs without feeling that Jacob is constantly left out. At eight years old, you know so much about disease, more than any child your age should have to comprehend. You are aware that Pelizaeus-Merzbacher disease (PMD) is carried on the X chromosome and that you have two healthy Xs but Jake has a sick X that causes his PMD.

You understand how PMD affects your brother, how he can’t ask me a question, sit by himself or walk. You know that he can’t eat like you do, and needs to be fed with the tube that was surgically implanted into his stomach when he was a few weeks old.

Everything is so hard for him, while you girls can ride your bikes, dance and eat the things you help me bake.

Although it may seem as if Jacob and I spend a lot of time together, relatively little of it is “fun” time, and in fact, we have little time alone during the week. We have our special allotment on Saturdays, but as you know, that it never starts off as a fun morning.

As Emily’s overnight nursing shift nears its end, I try to make sure your breakfast is prepared and a supply of bibs is packed in a bag for Jacob, all his things organized and easily accessible as soon as the front door closes behind her. I run through my mental list of things that need to be done before the craziness begins in earnest.

From the moment Emily walks out of our house until your big brother is fastened in his car seat, you listen to Jacob crying and screaming. Our neighbors must wonder what awful torture I am inflicting on him. And I see you sitting there with your hands over your ears, trying to block out the noise. When you realize that won’t work, you begin to dance around in front of your brother in an eager attempt to console him and elicit a smile. You probably don’t realize this, but I stop what I’m doing and watch you. My heart swells with pride when I see you trying to help Jacob but I also feel like crying—I wish you didn’t have to watch your brother struggle so hard to make himself understood.

You should be able to enjoy a lazy weekend morning at home in your pajamas, cuddling in bed with your parents, not watching us run up and down the stairs, organizing your older sibling’s medical paraphernalia. Unfortunately—for all of us, but especially for Jacob—this is not what our life is like.

In order for me to hang out with Jacob, we have to leave our house. He screams incessantly when I try to play with him at home while you are present. As soon as we leave, he calms down. I have his full attention and together we can enjoy the outing. Maybe Jake knows that I can’t tune everyone else out at home and that he is forced to share my focus with you, the cats, and all the other millions of things that distract me. Regardless of the reason, when we are out, alone, we have fun. It’s “Mommy and Jakey” time.

And we have our weekly swimming. You know how your big brother loves the pool and has learned to swim somewhat independently, surprising the lifeguards and making us all so proud of him. If I’m nearby and not in the water with him, Jake complains and is unable to enjoy the activity; however, if I am in the water, reminding him to move his arms and kick his legs and encouraging his effort, he beams. He giggles and I feel his arms tighten around my neck in a delicious and intentional hug.

After our 45-minute swim, as we are getting dressed and ready to leave, my back aches. Holding him, walking with him on the ramp into and out of the pool, is taxing on a body that has endured more lifting and twisting than it can handle. But watching Jake swim the length of the pool, seeing his little legs break the surface during a kick and listening to his squeal of delight when his hand touches the wall at the end of a lap, is worth every pain.

After those outings, I return feeling like I have spent some quality time with my first born, the child I often believe does not get enough of my undivided attention.

It is so much easier for me to play with you, my beautiful darlings. You express your thoughts and questions so eloquently, and you don’t need me to help you move your leg if it slides off the footrest of your chair. I am in awe of your intelligence and imagination. I love watching you play elaborate games with your dolls as you create different experiences for them. I can sit and listen to your stories for hours. I marvel at the various masterpieces you create for me, each one an incredible work of art.

I drive you to and from your school while Jacob is bussed to and from his. I bathe you and help put on your pajamas. I tuck you into bed at night and comfort you when you wake with a nightmare. A caregiver bathes your brother because he is too heavy for me to carry. I am terrified that I might drop his wet and slippery body during the short transfer from his special shower chair to his changing table.

The same caregiver puts Jacob to sleep while I’m with you, listening to stories about your day. I crawl into bed with Jake for a few minutes of cuddling before he falls asleep. And it’s the nurse in his room who administers his medication and helps ease him back to sleep in the middle of the night when he wakes up with a fever.

But, when I put you into bed this evening, your question sliced through me like a jagged edge of broken glass: Why do you love Jacob more than us? 

The answer, quite simply, is that I don’t love him more than you. And I don’t love you more than him. I love all of you the same. I just have to show it differently.

All my love,

Mommy

Marcy is speaking about her book at a Toronto event run by Three to Be's Parent Advocacy Link on May 28 from 7 to 9 p.m. at 452 Wilson Ave. RSVP to brenda@threetobe.org


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Chronic pain on campus: 'It's a silent, daily battle'

By Louise Kinross

Judy Sookehan Woo is a part-time student studying sociology, linguistics and women’s studies at a university in Western Canada. Judy has fibromyalgia and chronic fatigue. Fibromyalgia causes constant musculoskeletal pain and problems with sleep, fatigue, memory and mood. “If someone comes up and gives me a hug, it hurts,” Judy says. “Every day is unpredictable.” Chronic fatigue is a condition where the person feels exhausted no matter how well rested. “My illnesses are invisible and it’s a silent, daily battle,” Judy says. As a woman of colour with invisible disabilities, Judy has experienced what she describes as ableism and racism on campus. Follow her @Woo_Judy on Twitter.

BLOOM: What’s the biggest challenge you’ve faced with an invisible disability?

Judy Sookehan Woo: Negative reactions from professors who assume I’m healthy and able-bodied and treat me like I’m cheating because one of my accommodations is extensions on when papers are due. One professor, when students were in the room, told me she had ‘looked up and down’ the school policies and there was no mention of extensions.

This is a documented accommodation for me that is sent in a letter to the teacher by the Disability Resource Centre through interoffice mail. Usually, during the first week of class, everything's fine. Then, I can tell when the professor receives the letter about my accommodations because of the way they react to me.

It’s like they expect me to be the model minority student and they’re in a state of shock when I’m not, and then I’m treated awfully in class. They had it really rough when they went through their degrees and I appear okay so I shouldn’t use this letter as a way to manipulate the system. 

BLOOM: What did you do after that professor made that inaccurate remark?

Judy Sookehan Woo: I complained to the school’s Disability Resource Centre but they didn’t know what to do. There wasn’t a form for me to fill out or any kind of process to address this. There was no ‘I’m sorry this is happening to you.’ I asked if I should go to the Human Rights and Equity office and they dumped me over to that department. It was up to me to go to a different department I didn’t know to explore what I could do.

BLOOM: Have you found any administrator on campus helpful in resolving issues when your accommodations aren’t recognized?

Judy Sookehan Woo: Yes, the ombudsperson. There have been times when I e-mail a teacher to say I’m sick and I’ve missed a midterm and how can they accommodate me? And the professor doesn’t respond. Nothing. So going to the ombudsperson is the only thing I’ve found helpful. They’re neutral, but when they’re involved, professors are more likely to communicate.

BLOOM: Was there a group for students with disabilities on campus?

Judy Sookehan Woo: Yes, but it was an advocacy group that was more interested in politics than supporting people. It was like a popularity contest. They weren’t helpful when I came to them for advice and support.

BLOOM: Do most of the people in the group for students with disabilities have physical disabilities?

Judy Sookehan Woo: No, all of them had invisible disabilities. But except for two other women, they were all men and all white. I was the only person of colour who was transparent about my illness. It was very alienating.

BLOOM: Besides negative reactions about accommodations from professors, are there other challenges for you on campus?

Judy Sookehan Woo. Yes. There’s a lack of designated lockers for students with disabilities. I carry a big heavy knapsack and I try to find a locker assigned to people with disabilities that’s close to the class I have, but they’re scattered across the campus and the ones they have are usually already taken. There’s a similar problem in the main library where there are about 100 computers, but only one set up for people with disabilities that’s accessible. If I need it I have to kick that person off.

BLOOM: You mentioned there are designated rooms in the library with accessible computers. What are they like?

Judy Sookehan Woo: The computers in the designated rooms are very old compared to the computers available in the main library. They are constantly being fixed, so they’re not always there. There are two tiny rooms with four computers so it’s very cramped. There was never a working printer or access to the USB drive in the computer. If a person was in a wheelchair there’s no way to plug in their stick, unless they lift the equipment and plug it into an outlet in the wall.

BLOOM: What advice would you give a student with an invisible disability who’s just starting on campus?

Judy Sookehan Woo: Surround yourself with a supportive network of people and administrators.

BLOOM: How do students find supportive people? Like in your case, you didn’t find the group for students with disabilities helpful?

Judy Sookehan Woo: If you can find even a core of two to three people it’s important. When school policies change, a lot of the time students like us find out through word of mouth. I went to three clubs before finding a couple of people I consider friends. 

One of the clubs I went to was the students of colour collective. It took me a long time to find out who was a really good friend and who wasn’t. The people who work at the student loan department are very familiar with people with disabilities and grants and funding, and they can be a good source of support. They can help explain what the criteria is to get different kinds of funding.

BLOOM: What are other tips you’d give?

Judy Sookehan Woo: Have your accommodations written down for the professors. Do not compare yourself to other students and recognize how hard you have worked. 

It’s a full-time job to take care of yourself and keep up with classes. If you find yourself just coping, but not managing your illness, don’t be afraid to drop a course and regroup. To me, coping is like treading water and it’s not very healthy. You can end up burning out. 

Because school is stressful, be aware of your emotional and physical triggers. For example, I can’t drink coffee because it triggers my anxiety and school is already high anxiety as it is. Reward yourself every time you accomplish a goal. It’s not easy having a disability and going to school at the same time.

BLOOM: What would you like to do in the future?

Judy Sookehan Woo: I’d like to use new media to educate others as a woman of colour in the social sciences. Whether it’s Twitter, or filmmaking or using other social media, I’m interested in digital sociology.

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