People with disabilities are the largest minority in the United States and worldwide, with an estimated 27% of American adults living with some type of disability. In fact, most people will become disabled at some point in their lives, whether as a result of age, illness, or injury.
Stephanie Vann, MD, a rehabilitation physician at Johns Hopkins Medicine who helps people adjust to new disabilities that affect everything from how they perform daily activities to how they perceive and act in the world, is a disability advocate and founder of the YouTube channel This Ability Clinic, where she interviews guests from the disability and medical communities and explores how disability is represented in the media.
In celebration of Disability Pride Month, Van spoke with Public Health On Call host Lindsay Smith Rogers about what he’s learned about the disability community through his work, and more importantly, how changes big and small, from individuals to the larger healthcare industry, are making 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 a very important field that serves a very diverse population. Regardless of how you experience pain medically, surgically, or otherwise, pain is usually a problem that has a huge impact and interferes with your quality of life.
Pain is a universal disability in that sense. I’m new to the profession, but I’ve seen a wide variety of people, including people with disabilities. I feel like people with disabilities are the ones who need the most help. Medicine doesn’t yet fully understand how to serve this diverse population.
Many of the patients you work with have new and emerging disabilities they have never experienced before. What do you think is important for everyone to understand about disabilities?
The important thing to understand is that failure is ultimately inevitable for all of us.
Another thing is that just looking at someone can never tell you anything about what they’ve been through or what they bring to the table. Assumptions and judgments are the root of misunderstandings and can prevent us from realizing how much we have in common with people who seem completely different from us.
Many people may not associate pain with disability. Can you tell us more about your work there?
Many people who come into my clinic are not used to having limitations. Becoming disabled is a big change for anyone. A lot of what I do is first help patients understand what is happening to their body and whether it is a simple sports injury that will heal or a much more complex injury that affects multiple systems in the body.
The key is to help people understand: What is my new norm? What is this new situation I’m in? There may not be a miracle cure that can simply make someone better, but if they can understand what’s happening to them, they can regain 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 professionals better support people with disabilities when they come into their appointments?
That’s an important question in many ways. I feel like my most impactful work is about the one-on-one patient-provider relationships.
One of the main points I teach healthcare professionals is to think about the words we use. Are we using outdated, biased terms that perpetuate prejudice? Or can we choose words that are more inclusive, helpful, and accurate, but don’t carry the same stigma? An example I often use is the term “wheelchair bound,” which is unfortunately a very common term in healthcare. Whenever I hear someone use it, I explain that I prefer the term “wheelchair user.” It’s a very simple word choice, but it can really change how we think about disability and spread across different communities, different healthcare settings.
My other key tip is to put the patient at the center as a leader in the healthcare team. Traditionally, doctors are thought of as the ones who know the most and should make the decisions. However, I believe that healthcare providers work for the patient. We are there to serve by presenting options and helping patients make decisions. This simple shift in mindset can help individual healthcare providers practice more inclusion and accessibility.
How can the healthcare industry as a whole become more inclusive and supportive of people with disabilities?
The broader organization of healthcare has different levels: the hospital, the clinic, and the broader culture. There’s still a lot of work to be done in terms of physical accessibility for facilities to be ADA compliant. There’s also cultural accessibility, like streamlining communication between specialists. A patient with a complex condition may see five, six, seven different specialists, all of whom may be experts in their fields, but if they don’t communicate with each other, the patient has the extra burden of coordinating care. The system needs to be designed to facilitate that.
Including people with disabilities in your community — students, trainees, faculty, staff, etc. — especially in academia and medicine — is the best way to answer questions like what do we need to do to be more accessible and how can we be more inclusive. It’s okay if you don’t have the answers, but you can get some of the answers from people who live with disabilities. I can’t stress this enough: if you’re not sure where to start, just ask someone with a disability and they’ll point you in the right direction.
And at every step, from the individual level to the industry as a whole, we need to think about our own accountability, to be open and accepting and say, “I’m not going to do this perfectly, and I’m not going to always say the right things, but tell me how I can do better.” It’s this attitude that will help the industry as a whole succeed in becoming more accessible.
Many of your videos feature injuries and disabilities represented in television shows and movies. Do you think the media landscape is changing towards representing disabilities in more meaningful and accurate ways?
I want to give some credit to media culture and Hollywood because I do think there is a positive trend in the right direction. Actors and content creators with disabilities are getting more attention and being featured in mainstream films, which is very encouraging. However, there is still so much more to be done. 26% of the adult population in the U.S. identifies as disabled, yet only 4.2% of TV and film content depicts disabled people. The more we support this authentic representation, the more it will happen and the more it will snowball.
The explosion of social media has exposed a lot of people to the world of accessibility and asking, “How can I make my content more accessible to people who are hearing or visually impaired? And how can I get this content to the widest possible audience?” This is a really exciting concept that major media companies are finally starting to take advantage of.
I’ve seen a lot of shows recently that feature friends who happen to have disabilities, rather than friends who don’t have disabilities. Is this an example of what you’re talking about?
Absolutely. I think that’s a big sentiment in the disability community. Of course, disabled people are loud and proud about their disability identity, but at the same time, they are so much more than that. When the focus is solely on the disability, the character seems inauthentic and one-dimensional. Having the disability be just one aspect of the character makes it more authentic and allows you to empathize with the character more because you can see different sides to them and find something to relate to.
July is Disability Pride Month. What are some ways to learn more about the disability community and inclusivity?
I have to constantly remind myself that everyone is new to this at some point. I was new to it. Some people don’t even know that there is such thing as ableism or disability advocacy. But the momentum behind social change, the movements against racism, classism, sexism, gender bias, are all so aligned. [with disability advocacy].
An easy way to get a feel for the movement is to follow disability hashtags like #disability, #accessibility, #DisabilityVisibility. There are so many amazing content creators out there who identify as disabled and showcase their lives. The best way to learn is from the community. That’s the source. They’re living it. That’s the only way to truly understand what should happen in this movement. And how to get more people involved.
One of my favorite books that I recommend is Demystifying Disability by Emily Radau. I had the privilege of interviewing her last year for our YouTube channel and she was also featured in a webinar that Hopkins hosted during Disability Pride Month last year. Her book is an easy read, a quick listen, and an accessible read. And it really helps people at any stage of advocacy understand what the disability movement is all about.
Lindsay Smith Rogers is producer of the Public Health On Call podcast, editor of Expert Insights, and director of content strategy at the Johns Hopkins Bloomberg School of Public Health.