Full text of Isn’t it a pity? The real problem with special needs by Torrie Dunlap at TEDxAmericasFinestCity conference.
Listen to the MP3 Audio here: Isn’t it a pity – The real problem with special needs by Torrie Dunlap at TEDxAmericasFinestCity
In the early 1990s I was a student on this very campus. In fact, I was a student on this very stage.
I was a drama major who had a dream to change the world through arts education. The world, however, had something different in mind.
In one of my first theater jobs, I was directing a production of Joseph And The Amazing Technicolor Dreamcoat. I don’t know if you know it, but in it there are a lot of kids and they sit on the stage on bleachers on either side and they sing throughout the show.
We held auditions and we had a lovely middle schooler with a really pretty voice who also happened to use a wheelchair. I remember casting her in the play and feeling so excited about having someone with special needs in the show. I mean, how amazing for her and also how incredible for the audience, who would see someone using a wheelchair on the stage.
I spent way too much time feeling good about myself for this decision. We had a few logistics to figure out. So the production team and I put our heads together and we created a set design that used the traditional bleachers seating, but it also had a cutout so we could slide her wheelchair in and she would sit in her chair next to the kids on the bleachers.
We hadn’t told her about this, and on the day we moved into the theater I could not have been more excited. The theater was old and it wasn’t very accessible and it took 3 dads to hoist her in her chair up onto the stage. I led her over and I very proudly showed her where she would sit during the performances, and I couldn’t believe what happened next.
She looked up at me and she said: “How come I don’t get to sit on the bleachers like the other kids?” Wow. I could not believe how badly I had missed the boat. I had been so caught up in the visuals and my own good feelings about this that I had completely lost sight of the fact that she had a choice in how she participated and I had not even thought to ask her.
Without intending to, I had marginalized her. I had turned her from a 7th grader who likes to sing and just wants to be in a play with friends into some kind of poster child for disability representation in the arts. I never forgot that experience and how much I learned that day.
In fact, it informed the whole rest of my career. After years of teaching kids of all abilities, I took a leap of faith and I became a part-time program coordinator at a small grassroots nonprofit in San Diego called Kids Included Together. We were teaching child care and recreation programs how to meet the needs of all kids.
Nine years later I became the CEO and we have now done our work in 45 states and 10 countries and we teach thousands of people each year, and I have learned in my 20 years of immersion in this field that we can overcome our fears and the barriers that separate children with and without disabilities by changing our mindset.
In 2011 the World Health Organization and the World Bank produced a report on disability and in it the report states that children with disabilities are among the most marginalized children in the world. I believe that a reason why, as a society, we have not embraced children with disabilities as full participants in our schools and communities has to do with the limitations of our own mental models around disability.
We have moved from hiding and institutionalizing kids to a world where children with disabilities are seen as special and placed in special settings and given special services with special caregivers and they, and their families, have become disenfranchised from the community at large and they have become in fact their own separate community.
I believe that “special” has become a euphemism for “separate,” and when we separate kids and we place them in separate settings and give them separate services we are teaching them that their place is over there, with people like them and not as part of the full community, and when young, impressionable children learn that their needs are too great that they are too different and that they don’t meet our very narrow definition of what normal is, this has a life-long effect on their ability to contribute positively to society.
As adults, as parents, as teachers, as caregivers, it’s our job to help children grow up to be healthy, happy, confident adults who give back to the world. But when it comes to children with disabilities we have missed the boat.
The disruption that’s needed here is around conceptual models of disability. In the disability studies field, these are known as the medical model and the social model.
The medical model obviously comes out of the medical community, but it has widespread adoption outside of it and it views disability as a problem that needs to be cured or fixed. People with disabilities are seen as sick and only experts know what treatments are needed, and it’s not that cures or treatments are necessarily a bad thing, but when we view disability through the lens of the medical model, we see children who have them as a problem that needs fixing and we separate them from their peers.
This is why we also often lead with pity. We feel sorry for people who are broken and need fixing and we feel charitable when we can help. We design special services for special kids. We feel kind when we can help these poor kids with disabilities.
But we are making a lot of assumptions here. We are assuming that children who have disabilities have a poor quality of life. That they can’t learn and that they can’t achieve. We assume they need something different than other kids because they are special.
The counterpoint to the medical model is the social model and this model says that societal barriers are the problem and not the person. Disability is not viewed as negative but as neutral, and in order to limit the impact of a person’s disability we need to change the interaction between the person and the environment.
And because we’re at TEDx and we are not afraid of big words here I’m going to give you one more, and this is the model that the World Health Organization uses and it’s also the one we like to use at Kids Included Together: It’s called The Biopsyscosocial Model. And this model accepts that disability labels and diagnoses are an important part of a person’s identity and also understands that the environment plays a role in someone’s ability to function. This is a more holistic approach.
You might see your own perspective reflected in one of these models, or you might be thinking that you’ve never even thought about this before, but even if we haven’t made a conscience choice to adopt a model, we all have one. We use mental models to help us make sense of the world.
A mental model is a deeply ingrained set of beliefs based on assumptions, generalizations, history, experience, lack of experience and media images. Basically it’s how we think about stuff.
Think about it as your internal personal algorithm. When you’re faced with a decision, before you’re even conscience of it your internal model is already going to work, and for many of us our mental model around disability reflects the medical model: Something to fear, something to feel sorry for, something to fix, and we can feel good when we help people we see as less fortunate.