Acceptance: What does it mean to you?

There is a very cool group called 3E Love Network that promotes acceptance of disability.

Today is their International Day of Acceptance.

The group was founded by siblings Stevie and Annie Hopkins, two young adults with spinal muscular atrophy.

Their message: "tell the world you embrace who you are; a person with social rights, who has an opinion, who has interests, who has goals, who loves life, and who will not be without a voice in society. You are not living disabled, you are living."

Read Annie Hopkins' powerful story here. Annie grew up facing discrimination. She had a ton of spunk. "In college, she wanted to join a sorority, so she forced more than 40 houses on campus to build ramps so she could participate in rush week," according to the 3E Love website.

Annie created a wheelchair heart symbol to unify people of all abilities and spark conversation that would change attitudes. She and her brother Stevie started a company to spread the message. Unexpectedly, Annie died in 2009 due to a complication from a simple medical procedure. Stevie took the company forward.

To me, acceptance means respect for a person's intrinsic self-worth, their value as a human being, regardless of anything they do.

What does acceptance mean to you?

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'Mom, why are people staring at us?'

By Christina Herbers

It was a chilly Saturday morning as I drank coffee and thought about a family activity that would be fun for both of our girls. I decided that we’d spend the day like many other St. Albert families, so we headed out on an adventure to Servus Place Rec Centre.

My husband and I were excited, as it was the first time our youngest daughter Addison was trying out her new hockey skates. We packed up all of the skates, snow pants, mitts and toques, piled the girls and all of their stuff into our mini-van, and headed out. We entered Servus Place.

And then it started.

I had tried to prepare myself on the van ride over: People will stare, I told myself. Don’t let it bother you. Just enjoy your Saturday. But, despite best efforts, it always gets to me.

“Mom, why are people staring at us?” asked Addison, 3, voicing the words in my head.

I’ve asked this question for seven years, ever since my daughter Jaina was born with multiple disabilities. But I wasn’t sure I knew the answer. Why was this simple question so difficult for me to answer?

Should I tell my younger daughter the truth? And, if so, what is the truth, or what version of it is she ready for? I want to protect her innocence.

I wish I could open it up to the strangers who stare. I know we are different, but because you stare silently, you magnify the differences.

I wish I could ask people: Why do you stare? Do we make you uncomfortable? Do you have questions? Do you feel sorry for us? Do you pity us? Do you love Jaina’s pink wheelchair? Maybe you have not yet seen a beautiful angel like our dear daughter Jaina. Maybe she is the first angel child that has crossed your path. You see, Jaina very nearly died before she was born.

In January 2006, my husband placed his hands on my belly and felt Jaina kick for the first time. I thought to myself, we’re halfway there!—halfway to fulfilling my dream of having a family. I was 20 weeks pregnant, and my baby would be born in another 20 weeks, sometime at the end of May.

Then the car accident happened. We were driving home from a dinner with friends. In an instant, the baby I had dreamed of suffered a major injury. My spleen burst upon impact, and my baby went without air for a few minutes. In those minutes her life changed forever. A key part of Jaina’s brain stem calcified, so she would never be able to walk, talk or breathe or eat on her own.

I’ve come to believe that our beautiful Jaina was specially placed in our family for a reason.

The reason wasn't clear to me initially. I went through all the stages of grieving the child that I thought I would have. When Jaina was in Stollery Children’s Hospital for the first months of her life, I was in serious denial. Then, for many years, I was angry. And now, I can finally accept.

I believe Jaina is here to guide us to a future where we all belong: a future where families like ours are not stared at, where we are welcomed with smiles.

Let’s open up the dialogue between us. Ask the hard questions. Bring your children and come over to say hi to our family. Ask me how we are doing. Ask about the weather. Ask me about Jaina. Just talk to me. Include us in your community.

Together, let’s abandon our outdated beliefs about what defines the “typical family.” Let’s work towards a future of acceptance and inclusion. Let’s create a supportive community, one made up of people and families of all types.

Some of us may look different, and some of us may speak different. And some may be angels walking among us. That is my Jaina. She is here to bring peace. She is a calm, peaceful force. She does not suffer, and she is not in pain. She has fought to be here since before she was born. She does not know any different. To her, she is perfect, just the way she is. She has touched many lives, and I hope that in some small way, she can touch yours.

Christina Herbers is mom to girls aged five and eight. She works part-time as a consulting engineer, and is a writer, volunteer and weekend warrior living with her husband and children in St. Albert, Alberta.

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When language fails

By Louise Kinross

I was trying to explain to my therapist how having a child who didn't speak had let me off the hook in terms of answering tough questions about his disability.

I was expressing concern about my son's future as an adult, but feeling stuck in terms of how to discuss it with him.

While I had talked a lot about how his disability affected him when he was little, I hadn't in recent years spelled out clearly that he wouldn't be able to drive, or live alone, or do some of the things he'd identified as dreams in his Life Plan day a couple of years ago.

When he was little we talked regularly about his Langer-Giedion Syndrome, but we hadn't done so recently.

In fact, when I thought about it, I didn't clearly identify him as having disabilities in everyday conversation. I hadn't talked openly about disability and asked him how it made him feel.

I had taken advantage of the fact that he couldn't pester me with questions like a speaking child. A part of me felt that he saw himself as different, but not disabled, and I didn't want to hurt his self-esteem. I knew I was supposed to be nurturing a self-advocate, but our communication barrier, and the sadness in my heart, got in the way.

When he was little, we talked about disability in terms of how it affected him functionally: he didn't grow like other kids/"good things come in small packages;" he needed hearing aids to hear; he knew what he wanted to say, but his muscles wouldn't listen to him; he needed physio to help him learn how to walk; other people speak, but he would talk with his hands or a machine; he grew bumpy pieces of bone on different parts of his body but they weren't usually a problem. And if they were, they could be removed.

I'd always had an explanation for his random genetic condition ready, but I'd never used it (in fact, when I think about it, I've only ever shared it with one of my daughters, when she asked for a more sophisticated answer).

The plan was to explain that everyone has genes that are like letters of the alphabet. The letters are put together in words and sentences that give your body instructions on how to take care of itself. But in my son's case, he was missing two genes, or letters. He had a deletion on the long arm of Chromosome 8. This meant that some of the instructions to the body got jumbled. There wasn't any reason that he had this condition and the rest of us didn't. It was a random error (I'd have to work on the language there). Just something that happened at conception. It wasn't fair. It wasn't just.

I was trotting out this explanation dispassionately with my therapist when I surprised myself by breaking down. "I don't want to tell him that he's missing something," I said, sobbing at the word 'missing.' "I don't want to tell him that everyone else has these letters and he doesn't."

What followed was a discussion about how it was important that I talk more openly about his disabilities and how they would shape his life options.

"He knows he has a disability," she said, "but it can provide a great deal of relief when someone's condition is explained in detail to them." 

And then, she said, I would be able to list all of the amazing qualities that make up my son, the things that seem bigger to us than what is missing.

So I told my son last night that before he went on the iPad we were having a talk. I got out a piece of paper and wrote Langer-Giedion Syndrome on it.

Do you know what that is, I asked?

Yes, he nodded.

It's the genetic condition you have. 

I jotted down a few of the symptoms: hard of hearing, bumpy bones, you don't speak, your muscles are weak. I ran my hand over a large bony growth that had appeared on his leg in the last year. Your bones are bumpy, but usually they don't cause a problem, I said. And if they do they can be surgically removed.

He gasped and pretended to hyperventilate, his way of telling me that he hates hospitals and operations.

We went through the other symptoms.

Your body has lots of genes, I said. Genes are like letters, the ABCs. When you put them together they spell words that tell your body how to take care of itself.

Two of your genes aren't working properly (in the moment I managed to avoid the 'missing' word). So sometimes your body doesn't get the right messages and it causes problems.

How does it make you feel that you have disabilities?

He looked at me but didn't respond. My son's attention for this topic had reached its limit.

It must be very frustrating, I said. And it probably makes you feel mad sometimes. And sad.

To my great surprise, my son started laughing. He'd just been watching a Jackie Chan Adventures cartoon with his brother, and I can only imagine that his mind had moved on from our serious and dry genetic discussion to the lighter fare of the silly cartoon caper.

I began to write out the list of my son's amazing qualities: Funny. Kind. Caring. Curious. Sensitive. A good friend. Smart. Gentle. Courageous.

I read them out loud.

So even though you have Langer-Giedion Syndrome, you have all of these other things, I said.

It's a small start, I told myself. But an important one. Next on the agenda: a talk about the future.

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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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This is what beauty looks like

To celebrate the International Day of Persons with Disabilities yesterday, store windows in Zurich shops were filled with mannequins designed to reflect the beauty of real people with disabilities. Watch the process of creating the mannequins here. 

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Why does The NY Times demean disability?

 

Mr. Philip Corbett
Associate Managing Editor for Standards, The New York Times

Feb. 25, 2013

Dear Phil:

I wanted to bring your attention to this headline yesterday:

Don't Call Him Mom, or an Imbecile

Was the writer intending to refer to someone with an intellectual disability?

Would an equally appropriate headline have been:

Don't Call Him Mom, or a Retard

Why not? Both words have the same origins?

I first wrote you about my concerns with routine use of the word “retarded” in your newspaper to describe people with intellectual disabilities on Oct. 9.

On Oct. 26 you wrote: Our health editor and our mental-health reporter both agree that we should give stronger guidance to the newsroom about the use of “retarded.” I will be working with them to draft a new style note.

What happened?

The words retarded and imbecile are not neutral, nor are they the chosen descriptors of people with intellectual disabilities (and your style guide counsels neutral language and respect for preferred group descriptors).

According to The American Psychiatric Association: “Mental retardation is no longer used internationally [as a medical term] or in U.S. federal legislation.” The APA’s proposed name change for its new diagnostic manual in May is intellectual development disorder.

Would you show the same kind of disrespect for more powerful minority groups?

I will be sharing this on the BLOOM blog with our readers who are parents of children with disabilities in 136 countries.

Please let me know when this will be rectified. Thank you, Louise

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What message do we need to convey?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

As King writes in the study:

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

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

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

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Language matters

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

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

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One more on language

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

Ending Segregation of the Mentally Disabled

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

Intellectual Development Disorder

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

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

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

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Use of 'retarded' in The NY Times

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

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

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

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

Louise,

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

Best,

Danny Hakim
Albany Bureau Chief
The New York Times

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Word use and The NY Times: You disappoint me

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

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

I turned inside to page 18 and read this lead:

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

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

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

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

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

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

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

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

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

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

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

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

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The beauty of difference

Donna Thomson at The Political Caregiver posted this morning on a Ted Talk by fashion photographer Rick Guidotti, who travels the world showing the beauty in difference: From stigma to super model.

It began when Rick started photographing children with albinism, who had been shunned and teased because of their different appearance.

It grew into a project called Positive Exposure, which focuses on children and adults living with genetic conditions. Rick does photo shoots at annual support group conferences for children and adults affected by genetic conditions.

"Each individual living with a genetic difference desires to be viewed first and foremost as a human being," is his message.

I love this!

The organization also goes into public schools to educate students about our common humanity: The Pearls Project.

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Marginalized group finds a voice in play

Canadian playwright and director Judith Thompson is casting for a play that weaves together intimate stories from the lives of actors with Down syndrome.

It’s likely Thompson’s is the first play to give voice to this marginalized group: studies show that over 90 per cent of people given a prenatal diagnosis of Down syndrome opt to terminate.

The play – to run at Toronto’s 2012 Fringe Festival in July – will be a montage of monologues that explores what it means to have an extra 21st chromosome.

It will be modelled on two of Thompson’s earlier pieces – documentary dramas Body and Soul and The Grace Project: Sick. The former saw women share stories of life after age 45 in the form of a letter written to their bodies, while the latter gave voice to the experience of youth living with chronic illness or disability – people often stigmatized as being ‘sick.’

I interviewed Madeleine Greey, the writer producing Thompson’s new play, and mother to Krystal Nausbaum (photo above), an actress with Down syndrome who performed in The Grace Project: Sick and hopes to be part of Thompson’s new cast.

BLOOM: How would you describe the new play?

Madeleine Greey: It’ll be a series of monologues woven together about what it feels like to have Down syndrome. The play currently has no script and Judith has a way of coaching stories from people, then spinning her magic and writing and directing them into a cohesive form. This will not be a romanticized version of Down syndrome. We’re not getting anyone else’s interpretation of it. We’re going right to the source – people with Down syndrome. We want to face it head on. What does it feel like to have Down syndrome? What are the high points, what are the low points, what is it really like? Judith is not afraid of the difficult stuff and she’s interested in digging deep to find the joy and pain of every person’s experience.

BLOOM: Who can audition for the play?

Madeleine Greey: We’re looking for people with Down syndrome from teens to senior citizens. Verbal skills and previous acting experience aren’t prerequisites. Judith is well aware that lots of people with Down syndrome may be challenged in terms of verbalizing their story but she’s interested in having them express it in different ways – through dance, song, maybe even visual arts.

BLOOM: How demanding is the rehearsal schedule?

Madeleine Greey: We need people who can make what is a huge time commitment. In May and June we’ll be rehearsing Thursdays, Fridays and Saturdays from 11 a.m. to 5 p.m.

BLOOM: Why did you decide to produce the play?

Madeleine Greey: To be blunt, I’m always looking for opportunities for my daughter, that’s number one, and then secondly, my big motivation is to work with a person who is so creatively renowned. I have great trust in her. And thirdly, I believe that this play, which currently has no script, is going to reveal to audiences in Toronto what it means on all different levels to have Down syndrome. This is a group that doesn’t often have an opportunity to express itself.

BLOOM: What impact do you hope the play will have?

Madeleine Greey: I hope people walk out of this play saying ‘Wow, I had no idea.’ That’s my biggest hope. I feel you can go into theatre like this and meet people that you never would have encountered in your life, learn the most intimate things about them and be so deeply enriched by it.

Auditions for the play will be held Feb. 4 and 5 at Fringe Creation Lab at 720 Bathurst Street, 4th floor. Call Madeleine at 416-469-0852 or mado@madeleinegreey.com to reserve your spot. The audition will be like a group discussion where participants tell their stories.

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Talking about limb difference

In the first of a series of BLOOM clips, Janelle Cherng talks about explaining daughter Gabi's limb difference in social situations.

In BLOOM clips parents and experts talk about childhood disability. Send us your ideas for future topics! Thanks, Louise

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Explaining disability

I hope to include resources on explaining your child's disability in the January issue of BLOOM magazine.

I'm interested in any great articles you've read on this topic, or websites that can help parents come up with a simple, upbeat description tailored to different ages.

Please post any resources you recommend we share with readers.

Thanks! Louise

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I don't like explaining disability

A wonderful social worker here at Holland Bloorview sent me a list of commonly asked questions by parents. 'How to explain your child's disability' was at the top of the list.

This made me wince a bit because when my son was younger I was more proactive in explaining his differences -- both to him and to others. But somehow I seem to have lost my touch.

Because of Ben's communication problems I've never been forced to answer questions because he asks them. When I do bring up the topic it's intentional and from my perspective. I probably don't talk about some of the harder aspects of his condition in a way I would if he was to question me directly.

I honestly don't know how much he thinks about his differences or whether he just accepts that he is different. The only recent question I remember is Ben asking when Darcy and I grew tall. He has severe short stature.

When Ben was young I explained his differences in a simple and functional way. For example 'he knows what he wants to say but his muscles won't listen to him.' Or 'he doesn't grow the way other kids grow.' Or 'he uses sign language to talk.' Or 'that's just the way his ears were when he was born.'

I had a more sophisticated explanation ready for the later years. I would explain that our genes are like an alphabet that when put into words and sentences tells the body how to work. But Ben is missing a couple of letters. So his body isn't getting the right instructions.

I've only used this explanation once, when one of my daughters had questions. But in general my other kids don't ask questions about Ben. And sometimes I think that's because they know it's still a painful subject for me.

I know it's my job to educate and reassure them. But sometimes I just don't have it in me to be upbeat and okay with his syndrome.

There's also a part of me that sees Ben as 'different' but not disabled and somehow lacking, which seems to be the common public understanding of the word disability. So there's a part of me that bristles against putting the focus on his disabilities when talking with him, his siblings or others. I’d much rather talk about how many fish he caught at camp or how his being fills us up so full that when he’s away our chests hurt. The first couple of days, we kept thinking we could hear him and had to remind ourselves that no, he was gone.

And perhaps there is even a part of me that wants to deny some of his disabilities. For example his intellectual disability. Maybe there's a part of me that believes that if I just don't talk about it, it isn't real.

Ben wasn't diagnosed with an intellectual disability until he was 13. He is hard to test, and the first thing the psychologist said when she finished was: "He doesn't have mental retardation. He has the ability to reason." Then he scored worse on the tests than she expected.

When we were preparing for his life plan day, one of the descriptors he chose to share was that he was smart (in addition to gentle and funny). And he is, in an unconventional way.

I was reminded of how I really don't like explaining Ben's disabilities the other day when I met with Gary Bunch, a scholar in inclusion at York University. Gary agreed to meet with me to talk about Ben's school placement next year.

Ben is not going back to his segregated school. He is going to a regular high school that has a unit for students who are deaf and hard of hearing. These students don't have intellectual or physical disabilities. They are quite typical other than their hearing loss. They have some classes in the unit and go with interpreters into regular classes as well. Ben wouldn't normally be placed in this program because our board groups children in special-ed by intelligence (I wonder if I’d developed my alopecia young if I’d have been placed in a class for only bald kids!).

The board is allowing this placement because I pushed for it and involved our school trustee and superintendents.

I have a lot of concerns about how Ben will do, but I know that I don't want him to live his entire life in a segregated setting and now is the time to prepare him for a larger future. As I spoke with Gary about the transition he reminded me of how important it will be for me to educate the teachers and students about Ben.
In the past I've never had to explain that it's hard for Ben to learn.

We never told Ben that he had an intellectual disability when he was diagnosed. I realize this probably goes against parenting and disability ‘best practices’ but a part of me didn't want to tell him that it's so much harder for him to learn. I was sick of the multiple health and physical disabilities he was already dealing with. Every time we got a new diagnosis, it felt like a part of him was being taken away. I didn't want to take anything else from him.

For some reason, talking about how his muscles don't work properly is so much easier than saying that his brain doesn't work properly. I don't want to tell him that, much less describe it to a class of high school students.

But I guess it's a part of coming to terms with my son’s syndrome, something I thought I had already done so long ago. It surprises me when it sneaks up on me, the grief and resistance that is still there after all these years.

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Tommy explains his sister

A couple of months ago a new children’s book crossed my desk. It's called Melanie & Tommy have two pet rats and one syndrome. The book is narrated by Tommy (above right) and follows his adventures with sister Melanie (left) as they push their pedal car around their Ontario farm and rely on two pet rats to get them out of trouble. Tommy came up with the book idea when friends made fun of Melanie, who has a rare genetic condition. I’m delighted to share this blog by Tommy and Melanie’s mom, Nathalie Wendling. Nathalie writes about how the family's book came to be and the impact it’s had.

Tommy explains his sister
By Nathalie Wendling

Our daughter Melanie was born with Cornelia de Lange Syndrome (CdLS). There are only 100 diagnosed cases in Canada. Melanie is 11-years-old and has had 13 operations. She has vision and hearing problems, eating difficulties, chronic infections and developmental delays. Her speech is limited and she still wears diapers. Tommy, our son, is eight-years-old. Both children love their pet rats.

When Tommy was three we explained to him that his sister was different. We told him that most of us are made of peanut butter and jelly but that Melanie was missing the jelly. In kindergarten, we replaced those words with skin, blood and chromosomes. We said that most of us have 46 chromosomes and that Melanie only has 45 working chromosomes. He understood.

One day, Tommy came home and said he wanted to write a book. All of his stories seemed to revolve around the same ideas: a boy, a villain, a car crash and a pet rat that saves the day. After writing a few stories he said he wanted to introduce a girl to his adventures.

This is how the book ‘Tommy and Melanie have two pet rats and one syndrome’ was born. We wrote the book together. Tommy was in charge of the story. He wanted to make it funny enough to entertain his friends while still educating them about Melanie’s syndrome. I was in charge of making it informative and educational so it could be used to raise awareness about CdLS. I really wanted to focus on the word ‘syndrome.’ Many of the children’s friends had never heard this word before. I wanted to include questions and answers. I found that children seemed to have similar questions about Melanie and about their pet rats. Questions like ‘What is a syndrome?;' ‘How does it affect Melanie?;’ ‘What do pet rats eat?;’ and ‘How long do rats live?’

In Grade 1, Tommy came home devastated. His friends were making fun of Melanie. We had never seen him cry so hard and so long from emotional pain. We just couldn’t console him. He loved his sister so much and couldn’t understand why his friends were so mean. As we were searching for solutions, he started to calm down. We discussed our options, which included speaking to the principal or calling some mothers. But then we had a better idea: Why don’t we self-publish our book right away?

We announced the release of the book on the last day of school. I was terrified.

That morning as we drove to school I said to Tommy: “This could end two ways. Everybody hates the book and the situation will be much worse or everybody likes the book and understands Melanie a little bit more.” Without hesitation Tommy replied, “They will love it because I love it and I’m a kid and I know what kids like.”

I took a deep breath!

The book was overwhelmingly successful! We couldn’t believe it! We’ve sold more than 6,000 copies in less than one year. Their friends loved it.

Tommy’s friend Emily slept with the book for two weeks and wouldn’t share it with her siblings.

Erica said: “She’s not much different from the rest of us!”

Katrina said: “We think Tommy is so cool for sticking up for his sister.”

Aiden said: “I don’t think she’ll get bullied anymore.”

Clare said: “Melanie is the most famous person in Manotick because of this book!”

Parents understood her better and were finally comfortable enough to invite her for play dates and even sleepovers. How exciting!

By Grade 2, we were invited for a book reading at a public school. Tommy told me he really wanted to present the book himself with Melanie by his side and their two pet rats. During the presentation my husband and I were overwhelmed with emotion. The more the children laughed, the more our tears fell. We were so proud of Tommy. He demonstrated such courage. By the end, he walked towards me, grinned and asked: “What’s up with all the Kleenex? “

I couldn’t speak. He smiled and understood.

With so much of our attention focused on Melanie’s needs, Tommy has always been looking for ways to help and stand out. At four-years-old he was teaching Melanie how to count, play and laugh. At five, he was cleaning the bathrooms and vacuuming. At six he was making scrambled eggs and French toast. At seven he shovelled our driveway, the neighbour’s driveway and the whole court.

For him, the book presentations filled so much of what he had longed for. He’s helping children, gaining attention and inspiring others. He’s making people laugh and smile and sharing special bonds with siblings, adults and seniors in similar situations.

At one book signing a boy stood in front of our table, looked straight at Tommy and said: “Hi, my brother has Down syndrome.” Tommy smiled and replied: “Oh yeah, my sister has Cornelia de Lange Syndrome.” They shook hands and exchanged smiles. It was priceless.

A mom emailed to tell us that her son, Oren, was inspired by Tommy. Oren decided to make a presentation about his own sister’s syndrome to his friends at school. “I’ve never seen that side of him,” his mom said.

Educating people about Melanie is exhausting, repetitive and sometimes depressing. The rats and book have made it easier, more fun and even added some excitement. I keep a few copies in my bag and hand them out when I don’t feel like explaining her condition. For example, starting new sessions in gymnastics we meet new parents and children. When they stare at Melanie and figure out that something is different, I simply give them a book. It’s perfect!

We live in a small town called Manotick located near Ottawa, Ont. Last week we decided to venture out of our neighbourhood to a park further away. I watched from afar as Melanie was approached by a gang of Grade 6 kids on the play structure. After 10 minutes, I was surprised to see the boys teaching her how to climb to the top of the structure. Soon after they were integrating her in a soccer game with 12 other children. I was so confused. I approached the boys and said: “You know that she can’t really speak, right?” One of the boys answered: “Yes, we read the book.” Connor and Drew played with her for almost three hours. Wow!

Siblings of children with disabilities seem to live through an excessive amount of social pressure, guilt and family stress that parents don’t have time to deal with and don’t fully understand. This book has changed Tommy’s life in ways that we never imagined.

When one reporter asked Tommy what his favourite part of co-writing this book was, we thought he might say TV and radio interviews; having his picture in newspapers; his friends thinking he’s a celebrity; book signings in different cities; sleeping in hotels; receiving fan mail from the U.S.; or a standing ovation at the end of a presentation.

Nope.

“My favourite part is that no one makes fun of my sister anymore!” he said.
I think the best advice we have to share with other parents is that the more details you provide about your child’s disability to friends, family, teachers, neighbours and peers, the more your child will be accepted socially. At the same time, this will help reduce some of the stress and social pressure siblings experience.

Another strategy that has really helped Melanie be included with peers is that since kindergarten, we have always invited three to six girls over at a time (not just one!).

Melanie could only speak 20 words by the age of five, so play dates were difficult. But as a group, the girls have so much fun together and have figured out how to include her. When they come over, we always discuss Melanie’s syndrome, how it affects her and how they can help her. This has been a huge effort but has brought many rewards.

Melanie is now in Grade 4 at St. Leonard’s Catholic School and everyday those same girls who come to our house search for Melanie at recess and include her in talent shows, birthday parties and sleepovers. They have taught her how to love Justin Beiber, how to play tag, how to enjoy a manicure and how to stay up until midnight talking about boys.

The girls write songs and letters about how Melanie is like a sister they never had! They help Melanie go to the bathroom, eat, play, dress and so much more.

"Thank you girls! Because of you, integration is not just a myth, it has become real!”

Tommy also attends St. Leonard’s Catholic School. His kindergarten teacher once said, “Many of the children want to write books but I’ve never had a student who wanted to write a book about his sister. He’s one of a kind!”

“Thank you Tommy. You spoke loud enough to make a small difference around the world and a big difference in your school. We can hear you and we love you.”

Visit us at http://www.2petrats.com/

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'In each other's eyes, we are enough'

'In each other's eyes, we are enough'
By Louise Kinross

“Monkey man. Monkey man.”

A two-year-old stood over my son in the sandbox, pointed at his face, and chanted the words like a mantra. It took me a second to make the connection. Then blood rushed to my head, it hurt to breathe and my eyes stung with rage and shame. My son’s ears did stick out like a monkey’s. But I wasn’t in the mood for educating.

“Time to go home Ben,” I said, scooping him up in my arms. I limped back to the safety of our house, where I didn't have to fear the judgment of others.

It was a few months later that I got out the baby album. I wanted to send photos to a family in San Diego whose child had the same rare genetic syndrome as my son. When Ben was diagnosed, there were only 60 reported cases of Langer Giedion Syndrome in the world. Children with the syndrome are born missing two genes on the long arm of chromosome eight, resulting in unusual craniofacial features and a host of bone, growth and learning problems.

I hadn't looked at these photos in two years. And I was in for a surprise. At first, I couldn't believe my eyes. The pictures were not the way I remembered them. How could that be? This was my son Ben’s album, but the baby in the photos didn't look like my flesh and blood son.

Now a toddler, my son had big, bright, piercing eyes that could drill a hole of tenderness in your heart. My son had a dimpled, ear-to-ear grin, pudgy cheeks and an adorably large head that made him look like a little Buddha. My son had fair skin and extravagantly long eyelashes.

The baby in the photos looked odd: ears that stood out and didn't line up, an unusually broad forehead and wide nasal bridge, and thin lips that gave a blank look to his face. His eyes slanted down a smidgen, the tip of his nose was flat and there was a smooth faint line where there should have been a vertical groove above his upper lip. His head was too big and his features seemed out of proportion.

My gut turned.

It was like looking at one of those trick pictures. The first time you see a profile of an elegant young woman looking off in the distance, and that's all you see. But then someone explains how to look differently at the picture: what if the young woman's ear is really an eye? Suddenly, the face of an old woman with a large beak of a nose and a pointy chin pops out. Where did she come from? And then your eyes will not allow you to see the young woman again.

A switch had flipped in my brain, and no matter how many times I squinted or closed and opened my eyes, I could only see the odd features and asymmetry of my boy's face. I couldn't see the baby that I held in my mind's eye. I couldn't see my flesh and blood Ben.

Three years before, I was pregnant with my first child. Like most parents, I could only envision our creation as perfect: conceived of our love and possessing an original mix of our DNA, this child was new, untouched, more part of the unknown, spirit world he came from than ours. Knowing he was a boy, we had already named him Ben Keegan – Keegan meaning 'little fiery one.' Fittingly, he woke me with kicks at about 4 a.m. each morning. I would walk to the window, look up at the blinking stars and wonder who he was and where he came from. The stars represented the mystery and majesty of my son and my longing for him.

"Ben is here," my husband D'Arcy exclaimed the night he arrived. I tried to focus on the little body with a tuft of dark hair at my feet, but he was quickly whooshed away. I lay back, wet with sweat, spent and spilling over with joy. D'Arcy kissed me. "Is he all right?" I called out. "D'Arcy, go see Ben!"

The midwife returned and put her hand on my arm: "He has some unusual features," she said. The words floated by me like distant clouds. My euphoria was complete.

When he was finally passed to me, wrapped up in a blanket with a little white stocking on his head, he did look different. I was concerned, but I wasn't panicked. I didn't know how to interpret his appearance. "Isn't that the way all newborns look?" D'Arcy asked.

The pediatrician arrived, unswaddled Ben, and looked at him disapprovingly. "He has anti-mongoloid eyes, low-set ears and a bit of a hare lip," he said. I hadn't noticed anything unusual about Ben's eyes. I had always loved the metaphor of the eyes being windows to the soul. I knew that mongoloid was an archaic term for Down syndrome. What on earth did 'anti-mongoloid eyes’ mean?

"In Down syndrome, the eyes slant up," he said. "Your son's eyes slant down."

Ben – the sacred being that had grown in my body like a new limb – lay naked under the stark, fluorescent light. The doctor inspected him, piece by piece. "The timing wasn't right," he muttered, shaking his head. My jubilation, a brilliant, burning fire, was now flickering in the wind of a competing grief. How could my son's birth be wrong?

The doctor said Ben's symptoms looked like a chromosome problem.

We took him home in a haze of shock. "Couldn't we still be a happy family?" I asked my husband on day three. On day four we saw a geneticist. Based on his 'abnormal' features, she suspected Ben had Langer Giedion Syndrome.

But outside the clinical setting, a different picture was taking shape: my boy was growing beautiful before my very eyes. I wrote in my diary:

2 weeks and a day


You have very delicate features – beautiful blue eyes, well-defined and delicate eyebrows, a round face with plump cheeks and tiny little lips.


3 months


You are becoming more beautiful every day. Your eyes are drop-dead gorgeous – big, blue, long, long lashes. You have an all-out, ear-to-ear grin with dimples.


6 months


It seems like a miracle that you are here. I like to sit and wonder at you – where you came from, how you came to us, how you are so perfectly formed.

How was it possible that I could view Ben as "perfectly formed" when medical experts described his face as "a complex picture with multiple congenital anomalies?"

When I was immersed in the everyday tasks of loving and caring for Ben, he was so much more than his unusual features: he was a cuddly ball of heart, giggles, interests and charms, whose chest rose and fell at precisely twice the rate of mine.

In my eyes, he was physically beautiful. And it wasn't just a spiritual thing. Perhaps my eyes balanced out what was odd. Perhaps it was a matter of emphasis: in the same way that our brains can organize that trick picture to reveal an old woman or a young woman, I organized Ben's face in a way that made his features beautiful to me. Or perhaps it was simply a choice. I chose to see beauty.

I expected others to delight in my boy like I did. When they didn't, a black hole of grief opened up inside me.

A friend responded to Ben's photo by describing him as impaired. “I don’t think people are repulsed by Ben,” she added. Repulsed? I looked at the photo I had sent. To me he was irresistible.

Specialists who were consulted on other parts of Ben’s body couldn't resist documenting that he had "dysmorphic” facial features. I remember the first time I raced to the dictionary to look the word up, heart thumping at this new and horrible name that had been ascribed to my son. Dysmorphic: adj. "Malformed, misshapen or underdeveloped." One surgeon entered a clinic room and, without introduction, demanded angrily: “What is WRONG with his head?”

In my eyes his differences dissolved because I saw his face and being as a whole. But to other people, the features superseded the boy. In their eyes he was – at the core – different, an oddity, something less than human.

As I paged through Ben's baby pictures that night, I saw him through their eyes. For the first time, I saw the boy with the syndrome, the boy whose every feature had been scrutinized and found lacking. My eyes couldn’t correct the face in the photos – creating symmetry and proportion where it was lacking – like they did in real life.

It's been many years since then. Now, as a teenager, Ben has more disabilities than we ever imagined he would, and the one plastic surgery we chose to put him through, to try to reconstruct his ears, didn't work. Whenever I find myself weighed down by his medical picture – which is just one view and which inevitably focuses on what he isn’t – I know how to find my way back to a more true assessment.

I look into his large, deep-set eyes, which have, since babyhood, turned hazel. I can see my face reflected in the star-like light at the centre: he is part of me, and I am part of him. He has eyes you can fall into, and which are capable of communicating anything. In his eyes, I don't see the things that are wrong. I see Ben – which in its Hebrew form means ‘son.’ Is it possible that his wholeness derives from the simple fact that he is my son? He is mine. When I look into his eyes, I see a beauty and goodness that transcend appearance. His eyes mirror back my joy and acceptance. In each other’s eyes, we are complete. In each other’s eyes, we are enough.

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Is big better?

The other day Ben pointed at me and signed: "When did you grow up?"

"A long time ago," I said. He asked D'Arcy the same thing.

Then he gestured to himself to ask: "When will I grow up?"

"You are growing up, right now!" I said.

Later I thought about one of the signs he used and realized that it was "tall" – bent hand rising up into the air – not "grow" – one hand pushes up through the other, as a flower shooting up through soil. So he was asking: "When did you get tall? When will I get tall?"

It's been a long time since I spoke to Ben about his size and the fact that his syndrome makes him short and small.

When he was young, the way we value height and anything "big" grated on me.

I got tired of hearing people gush "What a big boy!" – even though they were often referring to a child's age, health or ability as opposed to size.

As I thought more about it, "What a big boy" seemed to be a strange code for "your baby is healthy" in Western culture.

After all, before most mothers hold their children for the first time, they’re weighed and measured like meat, and many new parents include these measurements in the birth announcement: Joe arrived weighing in at 8 lbs and 21 inches.

While your baby is still largely a blob, progress is measured by regular visits to the doctor who records miniscule changes in weight, height and head circumference. New mothers compare their child’s numbers with normed growth charts and with their friends, looking for where their infant 'stands' in percentiles.

In a world obsessed with individual achievement, babyhood is a competitive business. Books charting typical growth and development for infants are bestsellers. Before your child can outdo others in smarts, athletics or social aplomb, he or she can shine in size: big is better.

The value our culture places on size and height carries over to adulthood, where, particularly for men, it’s better to be big (but not fat) and tall. “There's plenty of evidence to suggest that height – particularly in men – does trigger a certain set of very positive, unconscious associations,” notes Malcolm Gladwell in Blink, the bestseller about how we make snap judgments.

So I will have to have a talk with Ben about why he doesn't grow like other people and will always be little. "Small is beautiful" I used to say when he was young. I'd come up with ways in which being tiny was an advantage: like being able to sneak into a really tight spot, or being a race jockey. Given Ben's hip problems, the less weight he carries the better. But what teenager thinks like that in a culture like ours?

On Lianne's blog My Life with Gabriel, I read part of a quote from Desmond Tutu on ubuntu, an African expression about what makes us human. It's a refreshing shift from the competitive individualism of North American culture:

My humanity is caught up, is inextricably bound up, with yours...We belong in a bundle of life.

We say, “A person is a person through other persons.” It is not, “I think therefore I am.” It says rather: “I am human because I belong. I participate, I share.” A person with ubuntu is open and available to others, affirming of others, does not feel threatened that others are able and good, for he or she has a proper self assurance that comes from knowing that he or she belongs in a greater whole and is diminished when others are humiliated or diminished, when others are tortured or oppressed, or treated as if they were less than who they are (page 31, No Future Without Forgiveness)

Here are some interesting (unrelated) links I came across:

Disabled Discounts is run by a couple that began researching discounts available to people with disabilities when one of them was diagnosed with multiple sclerosis. Their listings – for an annual fee of $25 – may be of interest to our U.S. readers. You can also follow their blog at http://blog.disableddiscounts.com/

Maternity Rolls is a new book by a Canadian mother who uses a wheelchair: "I realized that I looked like a living contradiction – disabled and pregnant – and that contradiction was pushing others to reconsider and confront their ideas of whom and what I should be."

Wheelchair wheelies is a story about an 18-year-old with spina bifida who does extreme wheelchair stunts, including back flips, at a skate park.

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