When Wayne met his partner Sherry in the 90s, Google didn’t exist, and neither did the term “invisible disabilities.” So when she started going through the incredibly lonely and isolating experience of having a chronic illness at age 27 that wasn’t visible, she couldn’t find other people going through the same thing simply by searching online.
Wayne Connell is the Founder and CEO of the Invisible Disabilities Foundation, and he joined our host Josh Basile for an insightful and thought-provoking Spotlight Session about accessibility and inclusion for people with disabilities that are “invisible.”
Here are some top takeaways from this session:
1. People with disabilities were early internet adopters
“So what I found out is, is that people with disabilities were early adopters of the internet. You know, they were trapped in their homes and all of a sudden they had this window to the world that they didn't have before.”
For so many of us, the internet is our quickest way to connect. For people with disabilities, this platform for connecting and communicating was a game-changer when it first became available. Wayne and Sherry utilized the internet to share her story and the stories of many other people with invisible disabilities. This platform for connection was crucial to creating a sense of community, as well as validation for the people who felt very much alone.
2. Believe people when they ask for help
“So a lot of times people with invisible disabilities, they need your help, but they're afraid to ask for it because people don't believe them.”
Imagine you’re in pain and you’re in a room full of people that could help you, but you don’t feel safe enough to ask. This is often the case for people with invisible disabilities. In fact, in 1998 Wayne and Sherry wrote a book called “But You Look Good” about the things that people say to people with invisible disabilities that can be extremely hurtful and make it more difficult to ask for help. When people are struggling, don’t question why. There are thousands of disabilities that impact functionality - we should be quick to help whether the reasons are obvious or not.
3. There’s only one way to understand: ask.
“Who's the expert? You. It's really about believing people. Our theme this year for our organization is ‘care in motion.’ Listen, believe, and support. It takes time to listen, believe what is shared, and then support as needed.”
Sometimes we make assumptions about people. We’re afraid to offend someone or sound ignorant and so instead of asking them directly about what they are experiencing, we make an assumption or read an article online. But no one except the person going through that particular experience can explain how they feel, or how you can best support them.
4. People with invisible disabilities are not “trying to get attention”
“People will say, well you just want attention. Well, it's the one thing you don't get attention for! Everybody leaves. You know, if you wanted attention, don't say you have a disability. It doesn't happen, right? You know, people may notice somebody in a wheelchair and give them some extra attention. But if you can't see it and it's invisible, then no, you don't get the attention.”
There is a harmful misconception that people with invisible disabilities are looking for attention, but this is a dated way to approach pain and disability. An estimated 51.5 million people in the US live with chronic pain - that’s 20.9% of the population. There are medications, therapies, treatments, and employment challenges that this population must face, and if we can approach their reality with compassion rather than suspicion, then we can collectively help make the world more inclusive.
5. In life, give people the benefit of the doubt.
“If somebody's driving slow on the highway or somebody's walking slow on a crosswalk, don't make assumptions that they're just messing with your time. We don't know what they're going through, what it took to get into the car, or what it took to walk across the street to get to the store. Just be a little bit more patient and don't judge a book by its cover. Let's assume that people are really trying to just make it through life.”
While someone who is blind will usually walk with a service animal or a mobility cane, someone with an invisible disability might appear to just be slow. Instead of assuming the worst, we should all make an effort to be patient, and to assume that people are doing the best they can. We can’t always see why someone is struggling, but that doesn’t make it less real.
Shine a light on inclusion
Speaking to Spotlight guest Wayne helped us to better understand the challenges for people living with invisible disabilities and how we as a society can be more inclusive. The bottom line? Accessibility and compassion go beyond disabilities that are obvious. By being compassionate, giving people the benefit of the doubt, and believing that people need help when they ask for it, we can create a more inclusive world for the millions of people who have invisible disabilities. If you’d like to watch more Spotlight Sessions, you can find them all here.
If you are a disability advocate or have a nonprofit organization and want to share your story with the world, reach out to accessiBe’s Nonprofit Partnership Program so we can get to know you better.