Monday, November 19, 2012

To ponder















"There is no contradiction between loving someone and feeling burdened by that person; indeed, love tends to magnify the burden. These parents need space for their ambivalence, whether they can allow it for themselves or not. For those who love, there should be no shame in being exhausted..."
Andrew Solomon, Far From The Tree

Friday, November 16, 2012

One question Friday













Post questions related to child disability and parenting in the comments below and we will answer one next Friday by going to an expert at Holland Bloorview -- professional or parent.

Fire away!

Thursday, November 15, 2012

Is difference an illness, an identity, or both?






















I'm ferociously reading Far From The Tree by Andrew Solomon. His insights on how parents find meaning in raising children with disabilities and other differences is fascinating. I've marked up the first chapter with lots of underlining and asterisks, but this passage really made me think.

"Anomolous bodies are usually more frightening to people who witness them than to people who have them, yet parents rush to normalize physical exceptionalism, often at great psychic cost to themselves and their children. Labeling a child's mind as diseased -- whether with autism, intellectual disabilities, or transgenderism -- may reflect the discomfort that mind gives parents more than any discomfort it causes their child. Much gets corrected that might better have been left alone.

..."We often use illness to disparage a way of being, and identity to validate that same way of being. This is a false dichotomy...Many conditions are both illness and identity, but we can see one only when we obscure the other. Identity politics refutes the idea of illness, while medicine shortchanges identity. Both are diminished by this narrowness.

"Physicists gain certain insights from understanding energy as a wave, and other insights from understanding it as a particle, and use quantum mechanics to reconcile the information they have gleaned. Similarly, we have to examine illness and identity, understand that observation will usually happen in one domain or the other, and come up with a syncretic mechanics. We need a vocabulary in which the two concepts are not opposites, but compatible aspects of a condition. The problem is to change how we assess the value of individuals and of lives, to reach for a more ecumenical take on healthy. Ludwig Wittgenstein said, 'All I know is what I have words for.' The absense of words is the absence of intimacy; these experiences are starved for language."

Louise here again -- I've often felt I don't have the words to describe my experience with a son who won't achieve conventional success, but who has a rich and valuable way of being and from whom I've learned the most about what matters. As Solomon says: "These experiences are starved for language." We don't have the vocabulary or imagination to articulate them because they fall outside mainstream thinking and language. We need new words -- new ways of defining beauty, wisdom, purpose, movement and strength that capture the diversity of how our children express these things.

Wednesday, November 14, 2012

Shelby calls for a more open, accepting world



As our lead up to the International Day of Persons with Disabilities Dec. 3, we continue to ask how we can pull disability issues into the mainstream. Here we speak with Shelby Nurse, a Florida college student and advocate for people with disabilities who spoke yesterday with her dad Thomas at the Bloorview Research Institute Symposium. Shelby is on her way to becoming a child life specialist to ensure that hospitalized kids "remain kids." In a strange twist, her aunt is a dear friend of one of our BLOOM readers in Switzerland. It was an honour to meet Shelby and hear her ideas.

Monday, November 12, 2012

Mommy blogging -- British style
















The Mumsnet BlogFest on Saturday drew about 300 mommy bloggers to London to talk about how blogging is giving a voice to women's issues and "recalibrating the power balance in the world of comment," said Justine Roberts, co-founder of the website that runs an umbrella network for bloggers.

In Finding Your Voice, Zoe Williams, a Guardian columnist and author of two parenting books, said she writes as though she's talking to someone she knows. "If you're expected to write to people you wouldn't want to talk to, it's hard to write. I think of talking to someone I know."

Rachel Cusk, an award-winning author of novels and non-fiction books, called on bloggers to "make contact with their innate authority" in writing about their lives. "If I was wondering about what people were going to think, or trying to mediate the reading experience, I wouldn't be able to be truthful," she said. And later: "Don't try to be somebody else, be yourself."

Panelists noted that it can take years to develop your voice.

In a session about how to handle negative comments from trolls, psychologist Tanya Byron spoke about needing to be prepared for criticism and insults when you blog under your name. You have to have emotional resilience that acts as a form of armour, she said. If you don't, it's better to write anonymously. One panelist noted that you write because it's the truth, not so people like you.

That said the panelists -- a number of whom write for major newspapers -- recounted how challenging it was to cope with hate comments and death threats that went far beyond the bounds of legitimate criticism. Most noted that entering into a debate with these trolls was not constructive.

Louise France, former editor of The Times of London' Saturday supplement The Magazine, spoke about immersing yourself in a publication before considering how to hone a pitch for a story that truly stands out. For example, while she wouldn't be interested in a story from the parent of a child who is bullied, she might be interested in the story from a parent of a child who is the bully -- and who can provide insight from that angle.

There was discussion about the importance of traditional publishing versus online publishing and how both can complement each other.

Mumsnet has led two recent advocacy campaigns. One was called the Campaign for Better Miscarriage Care and involved bloggers breaking the silence on their own miscarriage stories. The other was called the We Believe You Rape Awareness Campaign -- which included debunking myths of rape that lead victims to fear they won't be believed if they report the crime. I'm interested in finding out more about these campaigns and how their success might inform our efforts to raise acceptance of kids with disabilities.

When I asked about how we can bring child disability issues into the mainstream, Blogging Can Change The World panelists felt we had to be very strategic and specific in what we were asking -- versus a general request to increase visibility of kids with disabilities and their families. One suggestion was to align child disability issues with mainstream parenting issues.

The day ended with a talk by Caitlin Moran, author of How To Be A Woman and a columnist with the Times."Writing is about angles" she said, and finding takes on subjects that haven't been written about before. Ask yourself "Why am I writing this?" as a prompt.

She said writers often feel forced to have an opinion or come to a conclusion about a topic. Instead, she suggested simply describing the topic, or writing about your confusion over it. "Let information pass through you," she said.

Sophie Walker is a parent I met who blogs about raising her daughter Grace, who has Asperger syndrome, and her decision to train for the London Marathon. Sophie did this to raise awareness of autism and improve her health so that she could better support her daughter. Her blog grew into a book -- called Grace Under Pressure -- which was released last month.

Another mom I met is Hannah Postgate, who is about to launch a business bringing together products that support families of children with special needs. Her daughter Rosy has an undiagnosed genetic condition. Rosy and Bo should be off the ground in a few weeks. She plans to give tips on how to adapt products to meet specific special needs.

Check out the Mumsnet list of special-needs bloggers. Tomorrow, the forum is hosting a live chat with Edward Timpson, Minister of State for Children and Families, to discuss reforms in special education in Britain.

This is something I'd like to see us do at BLOOM, if we can figure out the technical side.

Thursday, November 8, 2012

Emily likes 'all the typical teenager stuff'






















Meet Emily Chan, our role model in the next BLOOM magazine. Emily, 16, has a rare neuromuscular condition that creates general weakness and breathing problems. She uses a ventilator and a power wheelchair. Here's a sneak peek at part of our interview.

At six months, when Emily was in an acute-care hospital, her parents were asked if they wanted to stop her medical treatment.

“They told me I have a choice,” says mother Peggy Chan. “That I don’t need to keep her. The doctor said they had families who choose to give up their baby because they won’t have any quality of life. I was very mad and I said: ‘Are you crazy? As a mom, you’re not even giving me a chance to try to raise her?’ If I had given her up I would have regretted that decision for the rest of my life.”

Emily lived for six years at Holland Bloorview before her medical condition improved and she was able to move home with her parents. She now uses her ventilator mostly at night. Emily says she likes “all the typical teenager stuff” and wants to go to university to become a child psychologist.

BLOOM: How do you define quality of life?

Emily Chan: It’s living each day to the fullest, being happy. I think everyone deserves to have that chance. The purpose of life is to be happy, to be happy with yourself and what you’ve done and hopefully make a difference somewhere.

BLOOM: What is your life like now?

Emily Chan: I have a great life. I have everything – family, friends, cute guys to look at. Everything is going great in my life. I have pretty good marks at school – an 82 per cent average. I like Facebook and I’m really into (Korean)-pop. I play the guitar and piano and really love doing that. Whenever there’s stress in my life I pick up my guitar and play my worries away. It’s a great stress reliever. I like talking, hanging around, going shopping, going to see movies – all the typical teenager stuff. I love Harry Potter.

BLOOM: What about reading. Do you like those teen romances?

Emily Chan: No, that’s so cliché. I like the deeper, darker stuff. I’m just finishing The Hunger Games.

BLOOM: What are your dreams for the future?

Emily Chan: I want to become a child psychologist. I also want to have a family and drive a Ferrari – don’t we all? But right now I just want to get to university. Living in a hospital for the first six years of my life has given me a broader perspective of things. I got to interact with adults more than the average kid, which made me mature faster. It’s like my brain is 20 when I’m 16. I’ve known a lot of people who had to go through really difficult situations and I’m less quick to judge. I know that even though a person may appear a certain way it’s because of something that’s happened to them in the past. You have to see the person, not just the person they appear to be or how they act. I understand the feeling of being isolated, which will help me understand someone who feels alone for different reasons.

BLOOM: How do you view disability?

Emily Chan: It’s just a part of you. God made you this way for a reason and you have to learn to love yourself. You have to realize that a disability isn’t going to hold you back. My mom always told me was that it doesn’t matter how you do something as long as you get it done. If you have a wheelchair it just becomes another part of you. And sometimes you can use it to your advantage – like running over people you hate!

BLOOM: What advice would you give parents?

Emily Chan: Don’t give up on your kid – no matter how grim the situation might seem. Always stay positive. You have to put in the time and the effort. Kids need their parents to give them love and support. Nurses and doctors will have sympathy, but it’s not the same as a mother’s hug that gives you that warm feeling. Every kid needs that. What got me out of Holland Bloorview was the constant pushing and love and support of my parents. They got me the treatment and the help I needed to thrive. My mom had a drive to bring out my potential and I think every parent should have that. In my opinion, many parents don’t have that devotion anymore.

BLOOM: Is your condition usually progressive?

Emily Chan: I’ve done some research about it and read stuff online about boys who have the diagnosis. It’s rare for a girl to have it. For the boys it’s a progressive condition and it keeps getting worse and worse. I’m really healthy now and I don’t have issues with pain. I think part of it is living at home and not being in a depressing hospital. I have more room to grow and expand on new things and explore what’s out there.

Wednesday, November 7, 2012

Mixed messages
















Sometimes my brain feels like it's going to burst from trying to make sense of the mixed messages I read every day about disability.

Today I was working on the next science roundup for the BLOOM magazine. Here are a few headlines:

On the one hand:

A child's disability benefits family and society, parents say

On the other hand:

Risk of violence almost quadrupled for disabled children, report finds (i.e. my child is almost four times more likely to be the victim of violence than a typical child, based on data from 17 studies in five high-income countries)

And:

Isolation strongest predictor of depression in youth with special needs

While:

Study questions value of inclusion for youth with autism

No wonder it's hard for the general public to understand what it means to raise a child with disability or to live with disability.

In other media news, an Australian government inquiry is looking into the practice of sterilizing disabled people, which is legal in that country. A briefing paper by Human Rights Watch on forced sterilization of girls and women with disabilities gives a picture of the practice internationally.

And while pondering this, we read great reviews of the film The Sessions, about the true story of a man who relied on an iron lung to breathe and hired a sex surrogate to help him lose his virginity (let us know your thoughts if you've seen it -- and an important question: are there male sex surrogates for women with disabilities, or surrogates for gays with disabilities? We know men with disabilities are more likely to have romantic partners and get married than disabled women).  

In other news: An Israeli entrepreneur has created a cardboard wheelchair made out of less than $9 worth of recycled cardboard, plastic bottles and recycled tires. This could make mobility affordable to disabled people in developing countries.  

And a BLOOM reader told me about an incredible story of how Westjet employees bent over backwards to help a family whose daughter with Down syndrome refused to board a connecting flight due to anxiety. This included putting the family up for a night in a hotel, providing food vouchers, giving the girl a private tour of the plane and allowing her to try out the intercom and choose her own seat.

Sometimes the extremes of compassion and oppression evoked by disability are simply too much for my poor little brain (and heart) to fathom. Louise