Tuesday, March 9, 2010

'I'm still on the bus'

As a kid, Jonathan Mooney had dyslexia and couldn't read. The message that he wasn't normal led him to hate himself. A high school guidance counselor suggested he'd end up flipping burgers.

He defied expectations, graduating from Brown University and publishing two best-selling books.

The Short Bus: A Journey Beyond Normal chronicles his trip across the United States in a yellow special-ed bus where he meets children and adults who share one thing in common: they've been told they're broken—by autism, cerebral palsy and a host of other labels. There’s Jeff, a 46-year-old who’s unemployed, loves math and organizes a monthly lunch for mathematicians at the local university. He times every move he makes on a watch and may have Asperger Syndrome. Ashley is an eight-year-old girl who’s blind and deaf with a medical condition that causes tumors to grow all over her body. She likes to curse out her teachers in sign language. And Katie is a 24-year-old college student with Down syndrome who works at McDonald's. She’s not accomplished in a conventional way, but for some reason everyone feels better in her presence.

This book shows how our culture's idea of normalcy beats the life out of kids who are different and fails all of us.

What I love about it is Jonathan's honesty. He shares his own story as a rider on the short bus—small-capacity buses that transport kids to special education—and shows us how his perceptions about disability evolve when he has the opportunity to meet children and adults considered outcasts, and instead finds beauty, strength and a common humanity. "If you watch the strange, the other, the bizarre long enough, if you really see these people, you will find familiar pieces of yourself in their experience," he writes. I hope his words inspire you as much as they inspire me!
BLOOM: How did you come up with the idea of taking a short bus around the U.S. to meet kids and adults with a variety of disabilities?

Jonathan Mooney: The short bus is a notorious symbol of disability and rejection in the U.S. After my first book was published, I spent a year touring around America hearing the stories of people who were labeled "abnormal" from many different perspectives. It became apparent to me as a short-bus rider and someone who was still in the process of understanding his own story that my "thinking through" of my relationship to "normal" and special ed was going to be the glue that held together these other stories. I decided to formalize this journey—to make it intentional—and that's when the idea of going around the U.S. and collecting stories came about.

BLOOM: Your own personal story is one of overcoming disability. As you say in your book—"From hiding in the bathroom, to Ivy League student to best-selling author." But many people you meet on your trip don't fit that profile.

Jonathan Mooney: I was struggling with being told I overcame my disability—that "overcoming disability" narrative didn't fit for me. I was trying to carve out for myself, and hopefully for others, a different "acceptance" narrative. The "overcoming" narrative situates disability as intrinsically negative and something that should be cured or erased from your life. Your disability is a core problem. The heart of the narrative in my book is about disability being a problem with the environment first and foremost—with the way the kid is treated—as opposed to the kid. The other problem with the "overcoming" narrative is that it disconnects you from a sense of community or fellowship with others who are told they're not normal. If I'm going to overcome disability, I'm done with it—it's not a meaningful part of who I am. My own journey is the antithesis of the overcoming story line. The message of the book is I'm still on the bus and I always will be. It's a meaningful part of my life.

BLOOM: What were the most important things you learned on your trip?

Jonathan Mooney: The first thing would be understanding the social construction of normal and how that isn't a physical fact in the world, but a set of human ideas we construct and deploy in certain circumstances that have a lot to do with power and commerce. The second would be that we can recreate normal in a different way. We're never going to get rid of it, but we can remake and redefine it in a positive way, and that is really hopeful. And the last thing would be the sense of connection and fellowship I felt with people like Katie and Jeff—and expanding my definition of who my community was. A huge lesson for me was that this little girl, Ashley, who has deaf/blindness—I felt a fellowship with her and with her mother's struggle. That was life-changing.

BLOOM: Often it seems that groups representing different types of disabilities don't share that sense of community—they may even disassociate themselves from certain types of disability.

Jonathan Mooney: That's a real challenge for the disability rights movement in general. It's so fragmented. So people with learning disabilities may get caught up in "You're too disabled, you're not like me," when referring to people with physical disability. People with wheelchairs may say "You're not disabled enough." The learning disability (LD) community wants to piggyback on the rights and structures that people with physical disability have created through their own advocacy—inclusion, services and legal protection. But then it turns its back on them. When my first book came out it was celebrated by the LD community. When I decided to include people with physical and cognitive disabilities in my second book, some of those same people said: "Why do you think there's anything to learn from them? Why would you associate learning disability with someone with autism?" There was almost a sense that I was bringing the LD community down. "At least the LD world is popularized. Why would you jump from that accepted thing into this freak show?" The construct of normalcy gives people with different physical and mental experiences the common ground of being told 'you're not normal' and a sense of fellowship with a whole continuum of folks who have been told that.

BLOOM: How did your perceptions—particularly of children with severe disabilities— change during the trip? One of the neat things about the book is we see your thought process change.

Jonathan Mooney: I began to see their experience through a rights perspective and not a medical perspective. So for Ashley, her world is organized through the medical model: she's deaf/blind. But at the end of the day, for her mom Deb, it was all about inclusion and access and respect—about rights issues. Deb said that all of Ashley’s surgeries didn't hurt as much as when she was pulled off the stage after one song at the Christmas concert. That’s a staggering statement. A lot of us would assume that the tragedy for a kid like that would be the surgeries, but for Deborah, the real injustice that hurt the most was that moment. I began to see that for kids with significant medical challenges, a core part of the challenge is a rights issue: a struggle for inclusion and respect and dignity. That was a real lesson for me.

How can we hope to change attitudes when most people don't have the kind of intimate exposure to disability that you did?

Jonathan Mooney: We have to make exposure and inclusion a strategic aim of the movement—whether that's the larger disability rights movement or a hospital like Bloorview. It's why programming is a core initiative of what I do. We have a long way to go. Making sure my son goes to school with people who have different abilities and physicalities is how we will raise another generation of people who don't look at people with physical and cognitive disabilities as "other" than themselves.

BLOOM: There's a sense among the general public that we do school inclusion well now. Yet too often we hear about a kid with significant disabilities being parachuted into a regular class without adequate supports, and the child isn't accepted like the other kids.

Jonathan Mooney: The devil is in the details. Inclusion is not just shifting physical space. It's a technical project and a moral and ethical project. The old special-ed model says the problem lies in the kid. An inclusion model looks at what happens around the kid. If we want inclusion, we have to shift the area of intervention from the kid to the environment—to the peers and the teacher and what happens around the kid. Unfortunately, folks continue to do inclusion in a treatment model. That's detrimental to everyone, because we know inclusion doesn't work without environmental change. Then when it doesn't work, they blame inclusion.

BLOOM: What advice would you give children with disabilities?

Jonathan Mooney:
Believe the people in your life who tell you that you're not broken and the problem is our narrow understanding of what is an acceptable human being. Come to an understanding of yourself as someone who is valuable and not broken and someone who is facing a civil rights struggle and not a medical struggle. From a practical perspective, become an advocate in your life. And find something you like to do that aligns with your talents, whatever they may be, and see if you can build a life on that. Most children in special education are robbed of the opportunity of developing talents and interests because all their time is spent in interventions and treatments.

BLOOM: How important is language in perpetuating stereotypes?

Jonathan Mooney: Our language is a conduit that reflects and shapes our thinking. The important aspect is the "thinking-through" piece. There's a temptation to do a rhetorical shuffling of the deck chairs. So we didn't call LD a learning disability for a while, we called it learning difference, but kids were still in special ed all the time and the high school drop out rate was 60 per cent. Activism starts with language and language is a catalyst to exploring our ideas and the way we think about difference. But language change needs to stem from, and lead to, thought change. I'm all about advocating for people who "experience" disability. It makes it not about the person, but the context. People have their physical differences. I will always be dyslexic and someone with Asperger's or Down syndrome will always be someone with that physical trait. But that trait only becomes a disability in certain contexts. The idea is to focus on where someone experiences a disability and how we can change that context.

BLOOM: My favourite part in the book was when you visit Katie, who has Down syndrome. Her world was all about relationships. She doesn't care about winning the card game, and she has her own notion of celebrity, which isn't confined to the images we see in the media, but includes her father, a teacher and her brother. How can we convince the general public that people like Katie have lessons to teach us about living a good life?

Jonathan Mooney: We have a notion of a consuming, autonomous individual that is essential to our economy, the person who buys and consumes, and if you can't do those things you aren't valuable. The challenge is for people—whether you're a parent or an individual with a disability— to move from being "patients" to being "agents." The Latin root of the word patient is to be flat on your back. When you're a patient, you have nothing of value. You're going to be treated and cured. When you're an agent, your self perception informs your belief that others can learn something from you. What's the tipping point? When do we shift from thinking of “Down syndrome” or “LD” kids as abnormal people that need to be treated or cured to thinking of them as people with a physical or cognitive difference who can teach us something, people who should be empowered?

BLOOM: What are your hopes for the future?

Jonathan Mooney: For a whole host of communities who experience disempowerment and medicalization, my hope is that enough of us—whether we're policy makers, writers or bloggers—can challenge that disempowerment and bring an experience of power and competency to folks who are pushed to the margins. That's what social change means for me. Can I play my role through writing, speaking and programs to empower and inspire enough other people to name the problem? And the problem is not Down syndrome or Asperger's or ADHD. It’s the fact that people are often robbed of their agency as opposed to empowered. We need to create programs and ideas and books and films that change that.

Jonathan Mooney lives in Santa Monica with his wife Becky and two young sons. He calls himself a social entrepreneur and is working on two books—one about the neurodiversity rights movement. In addition to his writing, he speaks on disability and inclusion, co-founded Project Eye to Eye, a peer-based mentoring program for students with learning disabilities, and designs programs that move marginalized people, including those with disabilities, into life-changing careers.


Powerful. One of Jonathan's comments jumps out at me. He says that many kids don't develop their interests and talents because their time is consumed by interventions and treatments. So true.

For the first time in my community, there is a choir for kids with special needs. My 17-year-old daughter has joined--and boy, can she sing!

As an adoptee I can relate to Jonathon's story about people thinking he had overcome his learning disability. I found my birth parents and thought I had overcome being adopted but sadly was still 'adopted' and would forever be an adoptee.

And about sitting between two worlds (the story of those with LD and those in wheelchairs) like Jonathon I have thought and talked about that so frequently. For me its about the able and disabled worlds ...and never being a true member of either one but getting to dabble in each when I am invited. Max was not disabled enough at times and then at other times too disabled.

When he spoke of the Ashley who is deaf/blind ...I gasped as I remembered my hurt moment when I fell apart in Indigo - true hurt when a man told his children to 'get away from Max - he's sick'. And yes it hurt more than Max's medical interventions. I sought out Joanna the social worker at Bloorview and she gave me some great tools for my toolbox so that I would be bettered prepared the next time I had an 'Indigo' experience.

Thanks, Louise for this. 'The Short Bus' is one of my favourite books. You did a fantastic job on the interview...Jonathan's comments were insightful and spot on.

Thank you for a most interesting interview with a fascinating person. I can't wait to get The Short Bus and would love to meet Mr. Mooney since we both live in southern California!

Louise this is wonderful. Thank you!

I just came to your blog through Elizabeth and Sophie's blog. Thank you. As an adult who grew up with a disability (I had polio as a child--one of the last to get it in the U.S.--and grew up with an affected left leg) I know a handicap can be--well, a handicap. But, given the chance, every child has something to offer. I've seen people with very severe handicaps turn those around them into better people. It really gets to me when anyone, most especially a child, is dismissed or talked about rather than too. I'll be back to read more.


What a much needed and insightful interview.

The comment, "The devil is in the details. Inclusion is not just shifting physical space. It's a technical project and a moral and ethical project. The old special-ed model says the problem lies in the kid. An inclusion model looks at what happens around the kid. If we want inclusion, we have to shift the area of intervention from the kid to the environment—to the peers and the teacher and what happens around the kid. Unfortunately, folks continue to do inclusion in a treatment model. That's detrimental to everyone, because we know inclusion doesn't work without environmental change. Then when it doesn't work, they blame inclusion." hits me hard because I struggle with this very thing right now at Gabe's school.

Already, I'm hearing comments from his school that he is "stubborn" and "non-compliant", although hand in hand with these comments is the idea of strategizing to "fix him".

My son doesn't need to be fixed to be included. That is what is SO hard about this.

As a parent, I am humbled and grateful for a school system that embraces Gabriel, but at the same time I fear that the box of inclusion is too small for him to be anything but un-able; like self-fulfilling prophecy type thinking.

Truly, it is the people in our lives how actually see our son as able that have made a big difference in his life.

Keep on writing Louise. I love reading your stuff!