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.
But what if we changed our internal model? What if we decided to see disability not as negative but as neutral? What if we understood that the environment could be a disabling factor? What if we decided to see children with disabilities as children first, and not as a disability, or as a label, or as special?
I want to tell you about an event I read about in the newspaper. It’s a rodeo for challenged buckaroos. It’s a rodeo for kids with disabilities. It’s an event designed for children. There are no special adaptations that are needed or offered that I can tell and the marketing materials say that this is a chance for some very special kids to meet real cowboys and cowgirls while being cheered on by their fans.
The piece in the newspaper has a quote from the organizer that said this is a way for the rodeo to give a great day to some great kids.
So what do you think? Medical model or social model? What assumptions are we making about a child’s disability in an event like this? Why does a child who has a disability label need their own special rodeo? And what messages are we sending to kids when we create a separate event just for them? What if the rodeo organizers had an event and invited all children to come regardless of their ability?
Picture what a day at the rodeo could look like with all kinds of kids there. They would provide extra assistance to kids who needed it, but other than that, would anything really have to change? What do we gain when we build a community where everyone belongs?
I’ve got another example, but I think I’m going to get some push back on this one because this one involves someone that many of us hold near and dear to our hearts: Santa Claus.
I was walking in the mall one November day and I saw this poster for a special photo session with Santa for kids with special needs. I know these events are happening in malls all around the country and I bet most people feel pretty good about them. I mean that seems like a nice thing to do, right? Making sure that all kids can visit Santa. It’s called Caring Santa.
But for me this raises a lot of questions and I hope it is for you too. I mean isn’t Santa always caring? Would you want your child sitting on the lap of uncaring Santa? And what are the barriers to access for Santa? These events are targeted at families who have children who have sensory sensitivities. They might be overwhelmed by the environment, the music, the lighting.
But what if we could design an event that would meet the needs of all kids and actually enhanced the experience for everyone? What do we gain when we separate kids and what do we lose out on when we do?
There are many milestones in a child’s life and for kids who celebrate Christmas a visit to Santa Claus is one of them. For most teens, the prom is a right of passage. Over the past few years, I’ve seen these events pop up called Special Needs Proms. These are events that invite teens who receive special education services to attend a separate prom in a separate location with teens with disabilities from other area high schools. All the dresses, all the limos, all the tuxes, it’s all donated so the event is free.
Teens without disabilities volunteer as hosts to the honored guests and they are rewarded with community service credit. Parents and friends are allowed to watch the prom as it happens through a live video feed. I know that as adults we care about and we worry about kids who might not get to attend prom because they are different. High school is a tough place.
But what if we put our efforts into making sure that high school proms could be welcoming and inclusive to all students who attend the school? We need to examine what the actual barriers to prom are for students with disabilities. Is it really the cost? Is it the lack of someone to be a date? Are there physical accessibility barriers?
And I think we need to look at what messages we’re sending both to teens with disabilities who may hear us say that they are not welcome to attend their own school’s prom and also to teens without disabilities and what messages we’re sending to them about pity, about helplessness, and about separation by ability.
And really, would you have wanted your mom watching your prom through a video feed?
I want to tell you about my friend Addie. Addie is eight and she’s in third grade but I want to tell you about her school music performances when she was in first and second grade. Addie uses a wheelchair and she also doesn’t use her own voice to communicate. When Addie was in first grade and her class had a music performance, you can see Addie was separated from her peers by about 20 feet on the other side of a wall and the way she was made to feel part of the performance was by the decorations that were placed on her wheelchair. So you can see what model’s in play here, right?
Fast forward to second grade, Addie has a different teacher using a different mental model and this time Addie is on stage with her peers and she has a meaningful role to play in the show. Addie uses a voice recorder and her teacher had prerecorded her sister Emily’s voice saying: “Thank you for coming to our performance” and at the end of a few songs, Addie hit the button the statement played; Addie with a huge beaming smile on her face.
The teacher had seen the barriers and she had overcome them and it really was not that difficult. And this is the opportunity we have and it is important.
Disability is going to touch most of our lives at some point. Whether by accident, by disease, by aging or just by the fact that we’re living longer. Most of us probably have friends or family members who experience some kind of disability. How do we want to be included in our communities? How do we want our children to be regarded? As something fragile, broken and special, or as people who have a right to fully participate in our communities?
I believe that when we examine our own mental models around disability, we will no longer default to pity and charity, but instead, we will put our efforts towards building communities that are accessible to everyone and everyone will benefit.