The Elephant in the Room: The Fear of Disability

I got a chance to meet the amazing Steve and Elizabeth Wampler of the The Stephen J. Wampler Foundation, or Camp Wamp. They said something that really made me think. We see disability as the “elephant in the room”. It is still an issue that we don’t feel comfortable talking about. We just scrape the surface of the issues around disability. A lot of what is talked about concerning disability has to do with one word, FEAR.

Now this probably isn’t fear of people with disabilities themselves, even though in some cases it can be. This is fear around the issue of what it means to be human or how we value people. This fear comes in the form of the issue surrounding what is life like living isolated from others. The good news though, is that we have had the feeling of fear before with others groups. The conversation around disability is starting to change.

Disability makes us think about the idea of being human and how we relate to the world we live in. Probably one of the most common exercises around sensitizing others to disability is “giving someone a disability” and making them live with it for an hour or so. A response I usually hear is “I couldn’t live like that”, “I am so thankful to be able-bodied”, or “I am going to help people more.” These expressions are given when they have only just started with the disability. However this is only the beginning for most people with a disability and for some it has never been their experience because they have always had their disability. In addition, the exercise only touches on disabilities that can be physically replicated.

The Wamplers brought up an interesting point of two diverging worlds of looking at disability. The old world model of seeing deficiency and a new world model focus on the abilities of people.

In this example, we can not accurately tell what it is like to be disabled just like it is impossible to tell what it is like to be gay (if you are not gay), or to understand what it is like to be non-religious (if you are religious). The way we learn about it is through people and their lives. Hearing people with disabilities’ life stories will also help with another fear around disability being that they bring nothing to the table and have nothing to contribute.

This fear works in multiple ways. Parents understandably worry about the future for their children who have disabilities, whether it is independence, jobs, or having people to rely on. The vaccine debate really 37422910 - turning the word disability into ability, business conceptisn’t about vaccines; it is more about having autism. People are scared of the quality of life their child can have if they are autistic. We see people rely on things like day programs, or workshops because at least it is somewhere they or their child can go. We see employers afraid to hire people with disabilities because they are seen as a liability (not as having the ability) or a lawsuit waiting to happen. We also see people who are afraid to interact with individuals who have disabilities; they are so different from me or we won’t have anything in common. They would always be reliant on me. What can I get from the relationship? Sometimes it is the fact that we don’t want to say something stupid and offend someone that holds us back. Being able to realize the wide range of the disability experience and see the value and assets people bring are important to opening up this field.

To get to that step though we have one last fear. The fear of Differences. Humans have always lived in groups or communities. Living in communities has made us look to things that bind us to be part of a group but also can lead to the “outsider effect” where anyone who is not in the group is a threat. Now that had more application in earlier times but still exist in the way we see people who we consider different. We can sometimes see this in community identities such as gay and straight, or type of religion. We can also see this effect in sport teams, such as what team you root for and your rival. A band you think is great or stupid. We make community and even exclude people sometimes by similarities or differences. But we often can overcome those differences as we see people who are Yankees fan who are friends with Red Sox fans. We see people who are Jewish friends with people who are Islamic. We see people with disabilities who are integrated in the community living full lives. The question is how? The truth is there is no simple answer but here are some guidelines.

EMPATHY.

When we are able to hear people’s stories, it takes them away from just being a label of disabled, or gay, or Hindu, or homeless. Each person has a story, desires, likes, dislikes and so forth. Sometimes when we see studies about people, we think about people as a group but it is shown we do better empathizing with individual people than thinking of mass groups to relate to. It is more powerful to change the idea of being gay to make it about each person looking for love and self-worth. It is more powerful for me to show the positives and challenges of being on the spectrum but also how I live my life.

WE NEED TO STOP LOOKING AT NEGATIVES, AS THE WHOLE TRUTH, AND START FOCUSING MORE ON ASSETS AND ABILITIES. 

We tend to focus on issues around disability or poverty. Those are not to be ignored but maybe the focus should shift. Another way perceptions change is we see people who are successful living their lives with things we saw as an issue. Richard Branson is dyslexic and Tim Cook is gay. While this still is part of the person’s identity, we accept that people are multi-faceted and focus on the person’s skills and what they can bring or have brought. We can now see Richard Branson as more of a whole person rather than just a dyslectic. We can do this in our lives too. One person knew me as Jason the person with autism. Trying to be nice, they treated me as someone with autism and asked to shake my hand. In other instances, people have learned to see me as much more as a thinker, a friend, someone caring, animal lover, sports fiend, who happens to have autism. When they see me as more than just one thing, they see what I can bring to the relationship. This means that we focus our own personal view of people and how we associate with them but also the way services work to help people. Services may have to change to a more person centered plan.

WE NEED TO RETHINK COMMUNITY AND HOW WE INTERACT WITH PEOPLE. 

We think about helping and impact on a big stage and that does work, but what you have the most control of is your own action. Some of that can be volunteering or working or raising money. More importantly though is how you connect with people. Being a community of people is the number one way to change perceptions to help people get connected, to meet people’s needs in finding jobs through the connections we have. Steve and Elizabeth Wampler have done this in their own way. Starting a camp for people who love to rock climb no matter the abilities of their body or so called disability. We meet the people we hang with through a shared interest or place. Those people can help us find places to meet our other needs.

We all need each other so lets start working with each other. The more we learn from each other, the more we can find ways work together the more the fear turns from an “elephant” to a “mouse”.

The Stephen J. Wampler Foundation, or Camp Wamp, is a non-profit providing outdoor education programs for children with physical limitations. Camp WAMP has been providing life-changing outdoor education opportunities for disabled kids. The ages range is 10-18 with physical disabilities/limitations. The foundation started in 2002. 

Jason Harris

Founder of Jason’s Connection – an online resource for those with disabilities, mental health, aging and other needs. Jason was awarded an M.S. in Cultural Foundations of Education and Advanced Certificate in Disability Studies from Syracuse University.  Jason is also a Project Coordinator and Research Associate at the Burton Blatt Institute, an international think tank for Disability Rights and Human Justice at Syracuse University.  He regularly contributes to the blog in his own series called Jason’s View and travels the country consulting and speaking about disability issues and rights. To read more from Jason Harris, read Jason's View.