From Individual to Industry: How We Can All Improve Disability Inclusion

Rehabilitation physician and disability advocate Stephanie Van shares how everything from individual word choice to health care systems and practices can better support people with disabilities.

 

Published
By
Lindsay Smith Rogers
Disability
Health Equity
Man in wheelchair shakes hands with a smiling man with a prosthetic leg seated on stone bench outside

People with disabilities make up the largest minority in both the U.S. and the world, with an estimated 27% of American adults experiencing some type of disability. In fact, most people will be disabled at some point in their lives, whether through age, illness, or injury.

As a rehabilitation physician at Johns Hopkins Medicine, Stephanie Van, MD, works with people adapting to new disabilities that impact everything from how they perform daily tasks to how they perceive and navigate the world. She is also a disability advocate and founder of This Ability Clinic, a YouTube channel where she interviews guests in the disability and health care communities and explores how disability is represented in the media.

In recognition of Disability Pride Month, Van spoke with Public Health On Call host Lindsay Smith Rogers to share some of what she’s learned about the disability community through her work, and more importantly, how changes big and small—from the individual to the larger health care industry—to make the world more inclusive and accessible.

How does your work as a pain management specialist overlap with your work as a disability advocate?

Pain medicine is such an important field, and it serves such a diversity of people. No matter what someone has been through—medically, surgically, or otherwise—pain is usually a very impactful issue, interfering with their quality of life.

Pain is a universal disabler in that way. Even though I'm early in my career, I've seen such a diversity of people, including people with disabilities. They are the people who I feel need help the most. Health care doesn't have the best understanding yet of how to serve this diverse population.

A lot of the patients you work with are dealing with newly acquired disabilities, things they haven't had to deal with before. What do you think is important for everybody to understand about disability?

An important thing to understand is that disability is eventually inevitable for all of us.  

Another thing is that you have no idea what someone has been through or what they're bringing to the table just by looking at them. Making assumptions, making judgments—those are at the root of misunderstanding, and it can prevent you from realizing how much you might have in common with someone who might seem very different from you.

A lot of people may not associate pain with disability. Can you talk more about your work there?

Many people who come to my clinic are not used to having limitations. Becoming disabled is a big adjustment for anybody. A lot of what I do is help people first understand what's happening with their body, whether it’s a straightforward sports injury that's going to heal versus a much more complicated injury that's affecting multiple systems in the body.

It's a matter of helping people wrap their heads around: What's my new baseline? What's this new situation I'm in? There may not be miracle treatments to easily reverse what's ailing someone, but if they can understand what's happening to them, it gives them back some sense of control and ownership: “This is still my body, this is still my life, and I can move forward.”

How can health care practitioners better support people with disabilities when they come into the doctor's office?

That's an important question on so many levels. I feel like my most impactful work is on the one-on-one patient-provider dynamic. 

One of my core teaching points with providers is to think about the language we’re using. Are we using outdated, biased terminology that perpetuates prejudice? Or can we choose words that are more inclusive, still helpful and accurate, but don't have the same stigma? An example I like to use is “wheelchair bound,” which is unfortunately such a common phrase in health care. Whenever I hear someone use that, I explain that the preferred term is “wheelchair user.” It's such a simple word choice, but it can really shift the mindset of how someone thinks about disability, and it can kind of spread throughout different communities, different health care settings.

Another one of my big tips is to center the patient as the leader of the health care team. Traditionally, the physician is thought of as the most knowledgeable and the one who should be making decisions. But I think of providers as working for our patients. We’re there to serve by laying out the options and helping the patient with their decision making. That simple change in mindset can help an individual provider practice more inclusion and accessibility.

How can the health care industry overall be more inclusive and supportive of people with disabilities?

In health care as a wider institution, there are different levels—hospitals, clinics, and the greater culture. There's a lot of work that still needs to be done in terms of physical accessibility for facilities to be ADA compliant. And then there’s cultural accessibility, like streamlining communication between specialists. People who have complicated conditions might be seeing five, six, seven different specialists who all might be very well-versed in their fields, but if they're not communicating with each other, there’s extra burden on the patient to coordinate care. The system should be better designed to facilitate that.

Including disabled people in your community—your students, trainees, faculty, staff, especially in academia and medicine—is the best way to answer those questions of, what do we need to do to be more accessible? How can we be more inclusive? It's okay to not have those answers, but you’re going to get some of those answers from people who are living with disabilities. I can't emphasize that enough: If you're wondering where to start, ask someone who has a disability and they will point you in the right direction.

And at every stage—from the personal level to the overall industry—we have to think about our own accountability. Just being open to knowing that, “I'm not going to do this perfectly, I may not always say the right thing, but let me know how I can be better.” That attitude is what's going to help the whole industry be more successful in being more accessible.

A number of your videos look at injury and disability as it’s represented in TV shows and movies. Do you see the media landscape shifting toward more meaningful and accurate representations of disability?

I want to give the media culture and Hollywood some credit, because I do think there's been good momentum in the right direction. More disabled actors and content creators are being highlighted and featured in more mainstream features, which is very exciting. But there’s still a lot of work to be done. 26% of the U.S. adult population identifies as disabled, but disability is represented in only 4.2% of TV and film content. The more we support this type of authentic representation, the more it's going to happen and snowball.

The explosion of social media really opened up a lot of people to this world of accessibility and thinking, “How do we make this content more accessible to people with hearing disabilities or visual disabilities? And how can we make this content reach as wide of an audience as possible?” That's a really exciting notion that big media companies are finally tapping into.

I've seen a lot of shows lately casting people who aren’t the friend with a disability, but rather just the friend that happens to have a disability. Is that an example of what you're talking about?

Absolutely. I think that's a huge feeling within the disabled community. Obviously they are loud and proud about identifying with disabilities, but at the same time, they are so much more than that;. When the focus is solely on disability, the characters don't seem authentic, they seem one-dimensional. Having a disability being just one facet of a whole character is a much more authentic representation that makes the character even more relatable, because you can see their multiple layers and find something in there that resonates with you.

July is Disability Pride Month. What are some ways people learn more about the disability community and inclusivity?

I always have to remind myself that everybody is new to this at some point. I was new to this. There are people who don't even realize that ableism or disability advocacy is a thing. But the momentum behind social change and the movements against racism, classism, sexism, and gender biases, are all very well aligned [with disability advocacy].

An easy way to get a taste for the movement is to follow disability hashtags like #disability, #accessibility, or #DisabilityVisibility. There are so many great content creators out there who identify as disabled and showcase what their lives are like. The best way to learn is from the community. That's the source. They're living it. That’s the only way to really get a sense for what needs to happen in this movement. And how we can get more people to join.

One of my favorite books that I recommend is Demystifying Disability by Emily Ladau. I had the honor of interviewing her on my YouTube channel last year, and she also was featured in a webinar hosted by Hopkins during last year's Disability Pride Month. Her book is an accessible, quick, easy listen or read. And it really helps ground anyone, in any stage of advocacy, to what the disability movement is about.

 

Lindsay Smith Rogers, MA, is the producer of the Public Health On Call podcast, an editor for Expert Insights, and the director of content strategy for the Johns Hopkins Bloomberg School of Public Health. 

 

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