Inclusion is what happens when we can celebrate our disability

With his height and his silver hair and moustache, esteemed disability rights advocate John D. Kemp cuts a commanding figure. And the prosthetic metal clamps he uses in place of hands are a frequent source of curiosity for the ordinary-handed.

Born with a congenital defect that left him without arms and legs, his disability has not stopped Kemp from “doing great things with the appropriate support.” Kemp is president and chief executive at the Henry Viscardi School at The Viscardi Centre in New York, where medically fragile students with severe physical disabilities experience a fully-enriched academic programme while having access to a variety of therapies, assistive technology and medical support.

Kemp was in Singapore in July to give a keynote speech at the E2 Connect forum aimed at encouraging collaborations between communities from disability care and industry partners. We asked him to share about a subject close to his heart, so he talked about disability culture.

You emphasise the need to pay attention to disability culture and identity. Why?

Disability culture is what connects disability populations across the globe, whose life experiences shape a common, collective understanding of the condition of disability. This culture building is guided by an alternative set of values derived from the disability experience.

Despite general advancements on the technological, environmental and legal fronts, perceptions of disability are in a state of flux globally. In particular, those who live without a disability for years, and then acquire a disability really don’t like that fact that they are joining this group of people.

But there has been an emerging consciousness and discussion among people with disabilities who are increasingly vocal about their disability experience, expressing themselves through various artistic mediums. People with disabilities need to know that they are part of a bigger group globally, and there are many reasons to be proud of who they are, both as individuals and as a group.

How do you see this culture fitting into the overall narrative of inclusion?

Disability identity is critical today. You are proud of it, accept it and you talk about it because it is the only way we can get to the point of acceptance in this world. We need to bolster our own self-worth and self-identity. We need to create cohesion among people with various types of disabilities and not be separate amongst ourselves.

For too long there have been parent-initiated organisations for people with cerebral palsy, blindness, deafness, intellectual disability and so on. Many of these were started by parents to solve a problem for their child, and they found other similar people. Now we’re trying to say that there are common themes that run across all those disability types. That’s what our culture is really all about, what the values are.

It starts with lifting ourselves to take our rightful place in society. For so long, people with disabilities have been the objects of charity and pity, and today with embracing our culture of disability we embrace a culture of empowerment and strength among ourselves. It doesn’t mean better than anybody else, but it means we’re equal to everyone else. And we have to respect other people’s cultures as much as we respect our own.

What are some of the values or traits of this disability culture?

It is not simply a shared experience of oppression. We usually ask: “Why didn’t anyone think about the accessibility of a product, service or building? Why didn’t they include us?” It encompasses our strategies for surviving and thriving at a higher level. Our core values include a heightened acceptance of human differences and accepting interdependence as part of our lives, rather than independence. We need help sometimes, such as holding the door, but our obligation to society is to help other people in the way that we can. This is where many people with disabilities don’t think about this. We are connected in life, and this is all part of our disability culture.

We have a tolerance for a lack of resolution in our lives. Nothing’s ever quite done or finished, and we live with that. Humour is also a very powerful tool – the ability to find something ridiculously silly, funny or crazy that happens to us and it is a bridge to understand each other. There was once in my life where I had to deal with an awkward situation. At a restaurant I made a visit to the restroom and while I was in there, the clamp on my right arm fell off – it has never fallen off before – and hits a guy on the foot. I was standing there stunned for a moment, wondering what to do, before I said, “Excuse me sir, could you give me a hand?”

You’ve also been championing for accessible technology. How is that going to be a game-changer?

I think it’s a very powerful concept and tool to improving the quality of life for people with disabilities, for giving us control of our lives, like being able to unlock and open up doors and working the environmental controls. I have a really hard time in hotel rooms and even in my own home as I have to be very careful of what is on the wall and what’s usable. I like products like the Thermostat by Nest, where you can set the thermometer from your smartphone. That’s what will be incorporated into the Internet of Things. You can also change the lights and play music by smartphone commands. Take that to the workplace and think how much better and faster people with disabilities will be able to do the ordinary tasks. It is going to be a significant equaliser.