Friday, April 17, 2015

I want a doll (or toy) like me

Here are some example of dolls and stuffies adapted to include stomach tubes, braces, wheelchairs and more. A number of you sent photos in. We couldn't include them all, but hopefully these will give you some ideas for your own dolls and toys.

Thursday, April 16, 2015

Wednesday, April 15, 2015

How a tattoo made my disability cool

By Tim Rose

Hi there! My name’s Tim and I have a disability. But this article is not just about living with that disability, or about how it impacts my life. It's about the importance of celebrating disability and how it has led to very good things for me. It's also about some ink that I wear with pride on my arm.

Before going further, let me introduce myself more fully. I was fortunate enough to be born with cerebral palsy spastic quadriplegia. Growing up, I used to get frustrated with the limitations that my disability put on me. I couldn’t play sports, I couldn’t stay up past my parents’ bedtime and I couldn’t always play how I wanted to play. For years, these limitations bugged me. But then something clicked in my head: I needed to embrace my difference, not let it beat me. No matter how frustrated I got, it was a part of my life and it was up to me to make it cool. I did it with a tattoo.

Yup, almost five years ago I decided to embrace my disability by getting the blue wheelchair emblazoned on my right arm in permanent ink. I had talked about it for years as a way to deal with some of the challenges that my disability posed. Not only did it look awesome, but it made me feel like I was taking ownership of my difference. Yeah, my body is different from most, but that difference is not something to hide from. When I did it, I wrote a blog that has today inspired me to revisit what it meant to me.

You will be happy to know that, all these years later, I still love it. In fact, I love it for so many more reasons than I did when I first had it etched into my pasty arm (beyond the obvious that it looks great). For a start, the day I got my tattoo was the day I met the amazing woman who is now my wife. For another, it represents my disability positive career turn. I now run a business called Disability Positive Consulting where I help businesses, schools and health workers look beyond deficits and gain a new appreciation for what it is to live with disability. My tattoo reminds me every time I glance at it why I’m doing what I’m doing. Lastly, it has been a huge confidence boost for me and the way I embrace my difference.

When I first did it, I talked about how it helped me define my disability. Here is a snippet from that original post:

And so my tattoo is my way of taking control of my disability and my identity. I am branded now, not by society, by my own choice. My disability does not define me, I define it. My physical limitations are most certainly still here, but I have grabbed my disability and made it a trait to embrace. The tattoo, to me, represents a very true part of me. Yes I have a disability, but on my own terms.

In reading this over again, I'm struck at how this was the seed for me to begin to think positively about disability. It was the step I needed to take to start this amazing road that I’m on. As I look at the tattoo now, I feel that same empowerment and strength, it’s just reached a new level. I have now devoted my career, and taken the leap as an entrepreneur, in large part thanks to that tattoo and the way that it freed me.

Let me be clear that I'm not saying to be “disability positive” you have to have it inked in your skin. But whatever you draw empowerment from, hold on to it and celebrate it. Whether it is a family member, a movie or even a particularly hot article of clothing, embrace the feeling that it gives you. It just so happens that my mark is a tattoo. Remember, having a disability does not mean your life cannot be filled with awesome experiences. I had struggles, in fact I still do, but I also have a lot of opportunities because of my disability. It’s okay to get frustrated, but hold on to whatever you have that makes you feel good.

Photo by Jamieson Dean

Tim Rose is a Toronto-based disability activist, writer and speaker who believes in celebrating disability in all its forms. Driven by this idea, Tim founded Disability Positive Consulting, an innovative business to promote positive ideas around disability in businesses, schools and communities. 


Tuesday, April 14, 2015

A sister asks 'Do you see me?'

By Cristina Breshears

Dear Mom and Dad:

Even though I was born into the chaotic aftermath of my big sister’s diagnosis, I wasn’t born understanding it. I saw how difficult things were for you: how hard you worked, how hard she worked. I saw the different people come to our house to help. I saw your tears and heard your prayers. But I couldn’t know what was wrong. I didn’t know what to expect or what I should do. It was my everyday normal, it was all I ever knew, but I didn’t know. 

I need you to help me ask the hard questions so I can better understand.

Although I could be scared of some of the things that happened in our house, I didn’t know I could come to you for comfort. Sometimes I was sad and sometimes I was angry. And sometimes I really didn’t know how I was feeling. You were so busy helping my sister and you were tired; and I saw how sad you were sometimes. I didn’t know that it would still be okay for me to come to you and tell you all that I was feeling. 

I need you to invite me to share.

Because I was the little sister, I didn’t know it was expected that I would someday surpass my big sister’s abilities in walking, in talking, and in school. It felt wrong when I could read the book to my big sister, and sometimes I thought I could see your sadness at those bittersweet milestones. I thought I reminded you of what might have been, and sometimes I felt guilty. I didn’t know it was okay and good for me to grow bigger and stronger and smarter. 

I need you to encourage me and celebrate my milestones and accomplishments.

Because my sister needed so much of your time and attention, it sometimes seemed that she was all anyone could see. I didn’t know that my efforts to stay quiet and still, to be good and not make trouble, would eventually lead to me feeling invisible sometimes. I didn’t want to take attention away from her. 

I didn’t know it was okay for me to be noticed. I need you to come find me.

Because your two hands were so often full of what needed to be done, I offered my own two small hands to help. It was a way I could be close to you. It was how I could be part of our family whose clock and calendar revolved around my sister. 

I need you to remind me that my efforts are appreciated but never expected and that your love for me is not contingent on my always being helpful.

Although standing up for my sister against bullies and discrimination was second nature to me, I didn’t know how to stand up for myself. I could hold her hand and help her hold her head up high, I could fight against injustices and lobby for change, and still feel too inconsequential to stand up for myself. 

I need you to show me we are all worth fighting for.

Although you and my sister taught me how to be compassionate and speak out for those who are marginalized, I didn’t know how to show myself that same compassion. 

I need you to help me understand that everyone deserves compassion, second chances, a hand-up, a shoulder, an ear, a hug—even me.

I was born three years after my sister’s brain damage. Her diagnosis and its effects 
were all I ever knew, but I didn’t know.

Love, me

Cristina lives in Portland, Oregon and encourages parents to check out the resources at The Sibling Support Project. 'All the feelings parents experience and share with their therapist, best friend, support group or spouse are also felt by their typical child. But many siblings have nowhere to go with all these feelings.' Sibshops are groups where games, new friends and discussion help siblings see that being the brother or sister of a person with special needs is for some a good thing, others a not-so-good thing, and for many, somewhere in-between. None of this support blames parents, Cristina says, and all of it can be life-affirming for a sibling.  

Sunday, April 12, 2015

Beauty exposed

“I was nervous… about seeing my own back... something that nobody sees... out in the open. I thought my back was going to be… what’s the word... grotesque? After I saw it, I thought, that’s not bad. It is my body and that’s it.”

By Louise Kinross

Photographer Steve Kean remembers sitting, as a child, on a stretcher, “nearly nude, and being talked about as if I wasn’t there by this doctor and that doctor. There was an ampitheatre with tiered seating and [medical students] watched. I was looked at as spina bifida, not as a person.”

That early indignity fuelled Steve’s desire to shoot portraits where he’d give adults with spina bifida “a choice about how they wished to be looked at and what they wanted to show.”

The result is Front to Back, a series at Strange Beauty, this year’s Tangled Art & Disability Festival at 401 Richmond St. W. in Toronto. “The idea is that these are whole people,” Steve says. “They have a whole story to tell, just like a book, which you read from front to back.”

The back has particular meaning for people with spina bifida, because it’s the spot where surgery is often needed to push part of the spinal cord, which doesn’t grow properly in utero, back inside and close the opening. Due to nerve damage, many people with spina bifida use wheelchairs.

In addition to a traditional portrait, each subject in Steve’s exhibit has a second image of their exposed back, which in some cases includes surgical scars. “It was an opportunity for them to show off their back and for me to light and photograph it as beautiful,” Steve says. “It’s stark and out there. These people were brave. Front to Back is a path to a sense of dignity and control over what happens to us. Audiences will see people first.”

The exhibit includes moving comments from each subject on why they participated.

“This is the scariest thing I could ever do. I had to do it for myself. It was time to expose something that all my life I had found ugly, embarrassing, humiliating. That’s the gift we’ve been given with this project—the opportunity to completely expose something that all our lives we have been hiding.”

Make sure to visit both Gallery 44 and Abbozzo Gallery in 401 Richmond St. W. Steve will be giving a talk on the exhibit on April 25 from 3:30 to 4:30 p.m. The building is full of Strange Beauty exhibits and is well worth the visit. Click on these images to see them larger. And you may recognize one of the models at the exhibit!

Friday, April 10, 2015

Note to self: Protect my mind

By Louise Kinross

A new study shows that parenting kids with disabilities over a long period of time jeopardizes cognitive function—especially memory—in mothers, but not in fathers, due to chronic stress.

The study—published in the Journals of Gerontology: Series B last month—used a large U.S. survey of parents from 2004 to 2006 to compare 128 parents raising disabled kids with 512 parents whose children did not have disabilities. The children with disabilities had autism, cerebral palsy, Down syndrome, attention deficit or intellectual disability.

Parents were tested on verbal memory and fluency, mental processing speed, reasoning, working memory and ability to switch their attention. Researchers also assessed parents’ physical and mental health, physical activity, social support and “negative parenting experience.” To determine the latter, participants were asked to rate how true six statements were for them. For example, “I feel good about the opportunities I have been able to provide for my children” and “problems with my children have caused me shame and embarrassment at times” and “it seems to me that family life with my children has been more negative than most people’s.”

Interestingly, at a younger age, mothering a child with a disability was associated with better performance on memory tasks, but by age 60 the pattern had reversed itself. Mothers who had higher levels of “negative parenting experience” were more forgetful, leading researchers to conclude that chronic exposure to parenting stress predicted cognitive decline for mothers of children with disabilities. Seventy-six per cent of mothers of kids with disabilities reported significantly higher levels of negative parenting experience compared with 46 per cent of the comparison group mothers.

The study found that mothers of children with disabilities tended to be much more depressed, less physically healthy and to feel less in control than mothers without disabled kids. They also had more problems handling their kids and less support from friends than women whose children do not have disabilities (yup, we’ve seen parent isolation in other studies about raising kids with disabilities).

Mothers with a strong support system, a sense of control and a history of regular exercise had better memories than those without.

This point is critical. “Keeping quality friendships, sense of control for life and [a] physically active lifestyle would help to protect these parents from accelerated cognitive aging,” said Jieun Song, a researcher at the Waisman Centre at the University of Wisconsin-Madison, who led the study.

I classify all of these things under the header “self-compassion.” In her new book
Parenting Through The Storm, Ann Douglas says being kind to yourself in the way you would treat a friend is one of the best things you can do to support a child who is struggling (see this recent blog post). I know, it's counter-intuitive, isn't it?

But still, if you’re a mom of a child with disability, you’re probably thinking: “Oh great. Now, to add to my never-ending “to-do” list, which includes taking my kid to therapy and multiple specialist appointments, doing therapy exercises at home, advocating at school and in the community, making my home the ‘funnest’ place for playdates on the block, and doing my child's bathing and physical care, I need to step it up by going to the club regularly and being a social butterfly. To be honest, I’m not sure how you go about increasing number 3 in the study—the sense of control you have over your life! Isn’t that an illusion? Ha ha! But I digress.

So, how do you find the time and energy to get fit and healthy and socially connected when you’re already running flat-out 24-7 with your kid with special needs?

Today I heard Gretchen Rubin, author of The Happiness Project and
Better Than Before: Mastering the Habits of our Everyday Lives, give a talk at the University of Toronto’s Rotman School of Management.

Gretchen spoke about her new book on habits—how we can develop good ones and break bad ones. I think we moms of kids with disabilities can benefit from some of her research and tips.

Good habits are “freeing,” Gretchen said, “because they eliminate decision-making and self-control” (in the case of the latter, if you’re like me you’ll find yourself lacking). Gretchen noted that if you’re in the habit of going to the exercise club at 6 a.m. every morning you don’t think about it, and you don’t fret about it, you just go.

So why is it so hard to drop bad habits or develop ones that we know would make us happier—or, in the context of the study on cognitive aging in moms of kids with disabilities, protect our brain power?

Because we don’t all have the same aptitude for forming habits or the same attitude towards them, Gretchen said. There isn’t one solution that works for everyone. “It’s important to figure out what kind of person you are” because that will determine which of 21 strategies, or a combination thereof, may work for you, she said.

One approach I think we mothers can try to help us work into our schedule habits that keep us physically and mentally healthy is called the “strategy of four tendencies.”

This is about how we deal with expectation—both outer expectations, like a work deadline, and inner expectations—and varies from person to person. Gretchen said we tend to have four responses to expectations. “Upholders” readily respond to outer and inner expectations and see them as equally important. “Questioners” will meet expectations if they agree they make sense. They hate arbitrary demands and need to turn an external request into an internal expectation to make it work. “Obligers”—the most common style, and certainly mine!—meet outer expectations well, but struggle to meet inner ones. Finally, “rebels” resist all expectations.

In talking about “obligers,” Gretchen noted that we’re often dissatisfied and frustrated because we’re so good at meeting other people’s demands but so bad at taking care of ourselves. To reverse this, we need to create “external accountability” for being kind to ourselves. That could mean paying for a class or coach, creating an accountability group with friends or similarly-minded people online, or coming up with funny ways that force you into good habits.

For example, friends who want to help each other work out regularly switch shoes at the end of their workout so they “have” to return for their next scheduled workout (otherwise the other person can’t exercise). One woman who wanted to get up at 6 a.m. every morning programmed Hootsuite to post an embarrassing message about her on Faceboook at 6:15 unless she got up and disabled it. Someone who wants to read should join a book club.

I think we moms of kids with disabilities should band together to create habit groups (except with a much cooler title)—perhaps online—where we encourage each other to do healthy things a certain number of times a week. What do you think?

Gretchen also shared other habit strategies.

For example, if you’re an “abstainer,” it means you do well when you give up a bad habit “all together.” This means not purchasing Haagen Dazs at the grocery store or keeping Hershey’s kisses in your office desk and deleting Candy Crush from your iPad.

Another tactic involves giving yourself “healthy treats. When we give ourselves healthy treats we energize ourselves and feel comforted,” Gretchen said. Stay away from food, drink and shopping in this category, and instead, be imaginative: listen to a favourite podcast or buy yourself some music.

When developing good habits, it's useful to consider goals as “milestones” rather than a “finishing line.” For example, many people commit to training for a marathon, then stop running. “That’s because the idea of the ‘finish line’ disrupts the habit,” Gretchen said. “You have to start over, and that’s hard.” So instead of telling yourself you have to lose 20 pounds, tell yourself you need to eat healthy forever.

Gretchen says “outer order contributes to inner calm” so use her one-minute rule to reduce clutter. If you can do it in less than a minute—hang up a coat or put some papers in the recycling, for example—do it. Instead of feeling you have to overhaul your entire house, “do it one minute at a time.”

Finally, “the strategy of convenience” involves making healthy things convenient, and unhealthy things inconvenient. For example, disable one-click shopping and put your cell phone in a closet instead of in your back pocket. “To change a complex habit you may need to use three to five strategies,” Gretchen said.

If you want to get a copy of a starter kit to help you begin a habits group with others, where you encourage each other, e-mail Gretchen at grubin at gretchenrubin dot com.

I know I'm going to!

Thursday, April 9, 2015

How a family that shares a genetic condition creates a vision

By Kenneth Springer

I’ve been pondering what to write for BLOOM given that I’m a parent with a disability and have two children who have inherited the condition from me. It’s not often a parent can tell their child that they completely understand what it’s like to have their diagnosis and mean it. After all—unless you share the condition, how would you know?

When told your child “isn’t normal,” parents may react differently, whether it’s shame or fear of the unknown or guilt or even disappointment and resentment. What will others think? Does having a child with disabilities reflect back upon us parents? Whose fault is it? Will we be judged and mocked? What happens now?

In my case, I skipped the above and was faced with one question: should I have children? I already knew firsthand some of the challenges they’d face. I’d tasted the pain of being different before they would even discover what being different means. In essence, I would see myself mirrored in my children.

The arguments for having or not having children went around in my head like some complicated paradox question that has no answers. To not have children because I feared passing on the condition meant I was denying my life’s existence and concluding that my experiences weren’t meaningful or valued. That is nonsense, because I’ve been lucky and blessed in many ways: I have many happy, cherished moments and I found and live with the love of my life. Yet to pass on a condition that will fill my children’s lives with challenges might be considered unfair, particularly since I hadn’t fully accepted my own differences at that time.

In the end, I trusted that if the children had a life similar to mine, walked a similar path and found love, then it would be worth it. I convinced myself that if I shared my own experiences with my children then they could leverage my past and do more than what I have done. Perhaps it was that I believe in hope or fate. 

For the record I’m legally deaf and have an extremely rare congenital condition called Craniometaphyseal Dysplasia. CMD is a skeletal disorder that can cause mixed hearing loss, vision impairments, facial changes due to bone thickening, and other complications. In some extreme cases a shortened lifespan is expected. I wear hearing aids and rely on the little hearing they provide and lip reading to communicate.

My children, first Elleleen and two years later Huey, inherited CMD and both are hearing impaired. Their early development progressed well thanks to my wife Eileen who ensured their learning included social and educational development. This was a plus for me because although I’m a high achiever, I was a shy person when young. Being shy was often a bigger obstacle for me than having the disability itself. I didn’t want my children to face that obstacle. Shyness is a symptom of being uncomfortable with who you are. This is made worse when it becomes a habit. As parents, we need to ensure that our children are confident with themselves as individuals. Having confidence is necessary to excel in life.

At the age of four, Huey became extremely sick. Huey had pain as a result of fluid buildup in his head. The doctors questioned how he had such a high tolerance for pain and why he was even alive. Immediate surgery was required with no guarantee that he would survive. If he did, the surgery might leave him with a brain injury.

But doing nothing meant death.

Miraculously, Huey survived the surgery but lost his eyesight in the process: he became totally blind in one eye and legally blind in the other. Memories of that time still feel raw and painful, especially the realization that Huey would be hearing impaired and legally blind. Given the massive lifestyle changes required to cope with blindness, my wife quit her job to care for our son.

For the first time in my life I was fearful and worried for Huey’s future. What would his future employment prospects be like? Would he be able to earn a living and be independent? All of the hopes that I had for him were dashed.

Naturally, my wife took this setback very hard. This made her more determined to ensure that the children had a strong foundation that would enable them to do what they wished in life. She encouraged them to stand up for what they believed in and to participate in activities and enjoy life. 

Gradually, Huey put the family back on track with the return of his bubbly personality. Yes, life had changed, but the process of facing challenges and finding a way through them hadn’t. Huey learned Braille and how to adapt in a world he couldn’t see. As a family, we learned with Huey and supported each other.

One of the disadvantages of having a disability is that you’re constantly underestimated. People expect the worst from you and conclude, for the most part, that you are hopeless, have no value and won’t amount to much. I’ve always hated this attitude. As a result, I never wanted to quell my children’s ideas or feedback.

Rather than stomping out weak ideas or rejecting others based on a difference of opinion, I found it better to be open-minded. I encouraged my children to explain their way of thinking and to debate ideas fairly. As a result, I found I was always learning from them. When I don’t understand their logic or reasoning, I try to understand why. I think this was pivotal in our children’s development. 

For example, Huey was interested in learning to use the computer because he wanted to be like his older sister. Unfortunately, because he can’t see he struggled with web browsing accessibility.

The web is very visual in nature. Sighted people generally develop skills to skim over information of little value and quickly extract what is relevant. This improves with the familiarity of the web page layout.

We all have different ideas as to what works best.

A blind person prefers information structured in a way that enables them to find it quickly. The aesthetics offer no value and may make things worse if they can't find the button they need on that page. People with autism may prefer to have information presented in a simple way so that they aren’t overwhelmed with a flood of information and colour.

One day when Huey was nine he got frustrated and listed everything that made it hard for him to use the Internet. Then he suggested how it could be improved. He wanted to be able to control, categorize, filter and select just the information he wants. In reality, Huey was suggesting an idea that I considered to be impossible: the ability to display websites in a way that match a user’s preferences for how information is displayed and interacted with. This would make web browsing easier, smarter and even fun, with you in control.

I’m a computer engineer, but Huey was explaining the Internet to me in a completely new way that was eye-opening. It seemed impossible, but I couldn’t dismiss his ideas. I was compelled to learn more. I researched within the community and found that accessibility issues were prevalent and Huey wasn’t alone: many people were struggling with this.

It soon became evident that to overcome the problems we needed to be more visionary than the current accessibility standards.

So we started a project called Hueyify. Hueyify is a software that allows you to control the way web content is displayed and the way you interact with it.

We’ve been working on the Hueyify project for more than two years now and every day we tackle the challenges and work through the stages of moving towards the goal of helping those who need it. Hueyify will be free for anyone who is legally blind or autistic worldwide.

Being a key part of this project has helped my children feel valued. They’ve each contributed ideas that have built their self-worth. From my experience, having self-value counteracts the negatives from disabilities.

In raising my children I’ve found that learning is a two-way street. I learn and develop along with my children.

I’m always sharing experiences with my children, whether it’s the way I was confronted with a new challenge or how someone reacted to my condition.

Often my children will suggest what I could have done differently, or tell me something isn’t worth worrying about and that I need to see the funny side of things.

My children’s acceptance of CMD taught me to find my own peace within myself. My children are truly my teachers.

Kenneth Springer is a computer engineer who lives with his family in Victoria, Australia.