Disability-sparked innovation can help solve world problems: Author
By Louise Kinross
The Power of Disability is a new book about people who say adapting to disability—their own or that of a loved one—is a wellspring of their creativity and ability to think flexibly. "Disabled people and their families have always invented their way out of everyday barriers," says Canadian author Al Etmanski, a community organizer who has worked in the disability world since his daughter Liz was born with Down syndrome. "If we want to become a more innovative nation, we need to tap into a group that has more daily experience at being ingenious and innovative." In 1989, Al and his wife Vickie Cammack created Planned Lifetime Advocacy Network (PLAN), which facilitates networks of friends around people with disabilities to ensure they live a good life. In addition to 100 fascinating stories about disability from every corner of the world, Al's new book includes little-known disability resources and historical facts. We spoke about his vision.
BLOOM: Why did you decide to write this book?
Al Etmanski: I wanted to flip the popular cultural narrative about disability from unworthiness to worthiness. And not only worthiness, but if you’ve got a personal problem, or a challenge in your organization, or you want to change the world, seek advice from the disability world. They’re an untapped resource with solutions to thriving with adversity.
I wrote the book because all of the advances that we’ve seen associated with disability have been slowed down, or stopped, by beliefs about, and habits toward, disabled people that are out-of-date or dangerous.
BLOOM: What's an example?
Al Etmanski: An example of a change that never fulfilled its promise is the Registered Disability Savings Plan. We thought the take-up on the RDSP would be immediate and extensive, but 10 years later it lags around 20 to 25 per cent for eligible people who have signed up.
One of the reasons is that a group of people we thought would be the biggest promoters—service providers—have not been. When you ask them, they’ll say ‘Of course it’s a good idea, but why would people with disabilities need money? We’re giving them what they need.’ That’s an oversimplification, but it’s an out-of-date assumption that equates disability with professional programs and services. There isn’t a recognition that services should supplement a good life, not take it over.
Baked into the architecture of our institutions and service-delivery systems are principles that go back to the eugenics movement—that people with disabilities are not worthy of full personhood, and should be sterilized and segregated.
BLOOM: Your book begins with a chapter about some of the advantages of disability. Can you explain?
Al Etmanski: We’re in a world where everyone talks about being divided, polarized, and seeming to have less and less in common with each other. In that context, one of the disability advantages is as a way of bringing people together.
One in seven people in the world have a disability, and in Canada, it’s one in five. And every one of those people has family, friends and supporters around them, who have a direct connection to disability. That means disability is the largest minority group on the planet. The sheer marketing power, if it was organized to advance the wellbeing of disabled people, would be extremely powerful. The common experience of disability has the potential to be a unifying force.
BLOOM: One of my favourite chapters is about how people use disability to adapt in creative ways.
Al Etmanski: Innovation is in the job description of being a disabled person or family member. If you weren’t an ingenious person, you simply wouldn’t be able to meet the day.
In Canada everyone is talking about our need to become a more innovative nation, not only in tech and science and medicine, but also in social and health supports. Well, if that’s what Canadians are looking for, why not tap into a group that has more daily experience at being ingenious and innovative? Start where people are up against a problem.
BLOOM: You write about a group of Brazilian mothers who started an organization to share practical and emotional support with families of children with Zika. They're also advocating for their children's human rights.
Ak Etmanski: That group calls themselves the guerrilla mothers of Brazil. In Brazil, there's very limited support from the government for disabled people. These mothers are making something out of nothing. I watched journalists use horrible terms to describe these babies, and yet, in the background of all of these documentaries were these moms, primarily, but also some dads, who were loving their kids.
And that’s what I mean when I say the combination of love and adversity will change the world. If you could study the techniques and methods and successes of solving tough problems within the disability community, with virtually no resources, you could save the world. That’s my bold assertion. We don’t have to look to some Bill Gates or a miraculous professional group to come up with solutions.
BLOOM: How did you choose who to include in your book?
Al Etmanski: That was the hardest job. I’ve been collecting these stories since the 1980s, and I had four cardboard boxes of stories from pre-Internet days. There’s no shortage of stories.
My book is organized around 10 lessons. I didn’t want it to be a long book, so I chose eight stories per lesson. I have another 200 that I wrote that I will start circulating in association with the book.
I’d love to give the rights and framework to the book to other groups. There’s no reason we couldn’t have an Ontario edition. Or an Australian version. Or an African version. I accumulated so many stories from Africa.
BLOOM: What was the greatest challenging of writing the book?
Al Etmanski: The biggest challenge was coming to terms with my legitimacy to write a book during this era, as a parent. There’s a profound change happening in the disability world where the voice and the consciousness of disabled people is on the rise, and should be recognized and supported. I gave a lot of thought to whether I had any right to do it, or not.
There were a number of disabled people across the country who told me I should write the book, and urged me to use the title The Power of Disability. I worked really hard to not only make sure the voice of each story was coming from the source, but to be in touch with all of those people to get their permission. So far no disabled person has told me I was wrong.
BLOOM: The book is written in a way that someone could pick it up, turn to a page, and learn something. For example, I never knew there was an enormous blue glass wall in Berlin to honour the 300,000 disabled people killed by the Nazis. Or that the website Sexuality and Disability had updated the Kama Sutra to include 24 sexual positions for people with physical disabilities. Who do you picture reading your book?
Al Etmanski: I see two audiences. One from within the disability world. I hope it expands their world, and makes them appreciate how comprehensive, thoughtful, ingenious and powerful that world really is, and to imagine what we could do if we work together.
The second audience is the average person who, like me before my daughter Liz was born, didn’t really know much about disability, and didn’t care too much.
BLOOM: I loved the blurb that Michael J. Fox gave you on the cover. 'This book reminds us of what we have in common—the power to create a good life for ourselves and for others no matter what the world has in store for us.'
Al Etmanski: I’d been in correspondence with him and his personal assistant for nine months, and at the last moment, his endorsement came through. I knew my name was not remotely enticing enough to get people to read it, but I felt like a quote from him might get people outside the disability community to pay attention.
BLOOM: What do you hope people take away from the book?
Al Etmanski: I hope people will say to their teacher, or human resources officer in a company, or people in government, this is the kind of book that will help you create a more receptive, inclusive environment for disabled people. I think the grand challenge in Canada is to move from the accessibility we have now, to genuine inclusion. I don’t think genuine inclusion will happen without changing people’s habits towards people with disabilities.
I know from my background as a community organizer that all of the tributaries in the disability movement have to come together, so that we’re all moving in the same direction. That’s the force that is necessary to create societal change.
BLOOM: Too often the disability community is splintered, with some disability groups not wanting to be associated with other groups.
Al Etmanski: If we are to become a mighty river, we also need to become peace makers. It means working with people I don’t like because they’ve taken a particular stand, and working with people who are strangers.