Health in the Commonwealth

Alan Hejl:
We’re all aging. If you don’t have a disability already, buckle up because you’re going to find yourself part of the disability community at some point in your life in some way. And so it really is the onus to see ourselves in this work and the mission.

Dr. Melicent Miller:
Welcome to Health in the Commonwealth, where we explore public health initiatives shaping lives across Virginia. I’m Dr. Melicent Miller. According to the Centers for Disease Control and Prevention or CDC, more than one in four adults in this country lives with a disability. And yet the systems we build, our housing, our transportation, our healthcare, our workplaces are still largely designed as though that isn’t true.

My guest is Alan Hejl, founder and lead consultant of Spark Access, an independent consultancy working on disability inclusion across the mobility industry. He’s a veteran of the auto industry who went on to found the first accessibility department of its kind. And he’s a member of the disability community himself. I started by asking about the journey that led him here.

Alan Hejl:
Spark Access is my independent consultancy for really sparking and being a catalyst for disability inclusion and accessibility across the mobility industry. Mobility is one of those words that means something different in a lot of different contexts, but it’s really all the new ways that people are moving through the world. So my focus is a lot on transportation planning and autonomous vehicle development and EV charging infrastructure. All of these things are new ways we’re moving through the world, and at the end of the day, they have to be inclusive for people with disabilities.

I started at Ford Motor Company in 2010, and in the background of that, I met my wife who is also still at Ford Motor Company, and she is a manual wheelchair user and has a spinal cord injury. So as we started to travel the world, it started to shape more of my view as both a partner and an ally for her of how we move together in different spaces. And we had experiences where we were traveling together in San Francisco in the mid 2010s and we were denied Uber rides. We really found the lacking of some of these new mobility solutions that everyone was really excited for and quickly found out that maybe it’s not the shiny bastion of inclusion and opportunity like we had thought.

And then I quickly found myself as part of the disability community between getting a late career ADHD diagnosis. And then along with that, I had to give up running after just repeated running injuries. And then I had a viral fever as well, and it ended up giving me chronic occipital neuralgia. So I have chronic nerve pain that I have to stay on top of. And in that transition, went from Ford to General Motors, and I saw a lot of the same trends where a lot of folks who are making the decisions around accessibility really didn’t know how to talk about accessibility or disability inclusion.

And that really led me to start the first accessibility department in the auto industry. And I’d say the biggest foundation was working on customer research. Turns out companies make their decisions based on what their customers want. And in the entirety of all the customer data that General Motors had at the time, there was no information about disability. Through that work, we found that about a-fifth of drivers and customers have disabilities. And for me, seeing the system as a whole where you have people who are in government, you have people who are in nonprofits, you have people who are in industry, and there’s all these layers moving towards the same goal, but rarely knowing how to work together for it. So that’s kind of the opportunity I saw to start Spark Access, to pull people together in the same room and to really talk about disability inclusion and accessibility from the same point of reference so that everybody can move forward together and move forward a lot stronger.

Dr. Melicent Miller:
One of the clearest ways to see how a system’s assumptions shape daily life is to follow the money, specifically how insurance decides what a person with a disability is allowed to have. Alan walked me through an example from his own family.

Alan Hejl:
About five or six years ago, there was a distinction within Medicaid that wheelchairs were only approved for use in the home. And it comes to one clause of language that just kind of very passively mentioned wheelchairs for being used in the home, but then never mentioned being used outside of the home. And so not only did Medicare and Medicaid really draw that line, and then that language and that template is copied to all private insurance.

So an example of that is my wife has her manual wheelchair. It’s a titanium frame, but the standard is aluminum. Titanium is lighter than aluminum. It’s also a lot more durable. And so for a lot of manual wheelchair users, having the lightest, easier chair to use is best, especially if you’re working. And my wife is, we now have a four-month-old daughter, so we’re running all over all the time to different appointments and different activities, and she had to pay out of pocket for that difference. It all kind of goes back to making the argument of is it really for use in the home or not? And that’s just one of those hurdles that all wheelchair users across the US have to fight for. And again, from the outside, it’s so hard to know what you’re getting into when you’re going through the most traumatic experience of your life of changing the way you move, changing your levels of independence. There’s light always at the end of the other side of that journey, but it makes it really frustrating rather than easy and feeling supported.

Dr. Melicent Miller:
If folks are relegated to assistive devices approved for home use only, that inherently increases social isolation because they can’t afford the equipment that would let them be outside, whether for recreation or just to explore their own neighborhood. It’s very limiting. Alan says that limitation isn’t an accident. It’s a default the system keeps drifting back toward.

Alan Hejl:
There’s kind of a base assumption within the system that there’s a push towards institutionalization, and it comes from just long history in the US. There was a really united political front in the ’70s that dismantled a lot of our institutionalization systems and allowed for this new era of freedom for a lot of people with disabilities, but that’s still kind of the default that the system will push towards us. We’re actively pushing away from it. The system really wants people to not be independent at the end of the day.

There is essentially kind of a forced poverty mechanism as well of a lot of our original disability rights hearkens back to that early kind of post World War II auto industry era where if something happens to you on that plant floor, you have this mechanism of disability leave that allows you to exit the workforce, still be paid, still have benefits, but to essentially get better and then return to the workforce. And that’s kind of the core even still of our system of those benefits are really intended assuming that you leave and get better and then come back. Disability is still framed, just from a bias point of view, that it’s something that is temporary, that it’s something you’re coping with but will return and bounce back from.

It doesn’t assume the reality of disability being a natural part of us and disability being a part of who we are. And so there are people I know who I’m friends with who can’t get married because of that. It’s this line of being kind of too wealthy to have the benefit and support net or too poor to thrive and live your life in a way that you want. So I think there’s a lot of those systemic barriers that, again, a lot of folks don’t know about until they’re in the thick of it.

Dr. Melicent Miller:
Alan’s work sits at the intersection of health and the built environment, the housing, the sidewalks, the transit systems that quietly decide who gets to participate in community life. I asked him where that environment is failing people right now.

Alan Hejl:
The biggest kind of aspect of our built environment is really how we build our cities at the end of the day of the default in the US is really like your city core and then sprawling suburbs around it. A lot of communities across the US are really just not designed to be there for people with disabilities. It can be a lack of sidewalks, it can be a lack of accessible housing. I think I was reading a study recently that cites, there’s a 2023, the US Senate held a special committee on aging session and they really talked it through that only 5% of homes in the United States are considered accessible. So when you think of the contrast from the numbers that the CDC has, 27% of the US citizens have disabilities. And that’s us, that’s our parents, ourselves, our children, our neighbors, our friends.
I use the story of my mother lives in Baltimore and has a second floor walk up and we can’t visit her because my wife’s a wheelchair user and we’ve always got kind of gear with us and whatnot and we’ve made it work before of I’ve piggybacked her up a flight of stairs, but it’s one of those things that there’s just not enough accessible housing on the market to talk to the social aspect of it. It’s going to be very isolating for a lot of people with disabilities. If they can’t leave their house freely, if they can’t go and visit their friends and neighbors freely, that’s isolating.

We do have kind of the aging population, and I think my favorite term comes from the AARP of the silver tsunami where our baby boomer generation is set to age and we need a lot of these systems to start planning, start shoring up for this huge generation wave that’s going to be aging in place and it’s going to be experiencing a lot of these limits firsthand. So whatever planning we can do now really provides more opportunity for the future.

I would say added to that as well is the transportation side of things with the suburban sprawl and the lack of distribution of public transportation becomes really difficult. And I’m based in Metro Detroit where we’re really at the epicenter of that issue. And that’s something that it’s not unique to Detroit, it’s in Virginia, it’s in all the other 48 states. But there are, I think a lot of, I’d say optimisms of identifying what we can start doing about it. Micromobility, transportation that’s more addressing on-demand ridership instead of fixed route. And then we have a really modern and new way of planning emerging called transportation-oriented development. And that really is centering this transition of somebody may be driving one day and not driving the next to really address it head on that you need this flexibility in the system for people to live and thrive.

Dr. Melicent Miller:
That last point is one I want to underline. Sometimes people assume that if someone has a disability, it’s a disability from birth. But we need to plan for life altering events, and certainly we’re all going to age one day. If we build with that intent from the outset, we avoid a great deal of retrofitting, which costs far more on the back end than building exclusively would have in the first place. Alan gave me an example of a housing type that gets this exactly backwards.

Alan Hejl:
One example of a housing format that I’d say is exclusive and not inclusive is, and this can offend some people, but it’s town homes. And town homes, they’re very developer-friendly because you’re able to build a multi-unit, multi-bathroom housing with usually a built-in or attached garage. So it’s kind of the developer dream and it’s something that with the density often checks the boxes where communities are saying like, “We need more dense housing.” The issue is town homes have an odd exemption to the Fair Housing Standards Act that HUD sets. And when you think of a town home, it’s usually multi-story. Rarely, if ever, do they include elevators or any sort of barrier free aspects to them. And what I’ve found in a lot of developments is they’re often going in places that require public funds. Town homes really only exist with some level of public subsidy, but then with being exempt from the Fair Housing Standards Act and a lot of the accessibility requirements with that for barrier-free units, town homes are kind of this asterisk in that system where, and I call it exclusive housing.

So that’s one of those soapboxes I get on in educating folks of until you’re confronted with being a person with a disability who’s being invited to town homes and whatnot, those barriers are rarely felt or seen.

Dr. Melicent Miller:
So what does it look like when it’s done well? Alan says the best example he’s experienced had nothing to do with building codes.

Alan Hejl:
One of favorite places me and my wife have traveled is Japan. And I think you’ll hear that from a lot of people with disabilities who visit Japan of things are just different there. And from a perspective of their built environment is not always fully accessible, Japan is a very service-oriented culture. So in addition to the gaps in the built environment, there’s always this level of customer service and really helping other people. That is where you get the cultural mix of accessibility.

One example of that too is my wife and I were staying at a hotel in Osaka and we requested a roll-in shower for our hotel room. And they had actually had a great one, but they didn’t have a shower bench. So she had nothing that she could transfer out of her wheelchair to shower. And we brought it up with the staff and it took a little bit of Google Translate of I don’t speak Japanese and they didn’t speak English. And with showing pictures of a shower bench and they finally understood what we needed, they took what must have been like a thousand dollar tea table from the lobby and brought that up to our room and it worked perfectly for us.

I don’t think you would get that in the US. And that comes to this assumption in the US that we have the building code and infrastructure and we have this assumption that it’s all figured out. But for any person with a disability in the US, the ADA is a civil rights law, but at the end of the day, it’s a reactive law that has very little proactive support behind it. When you think of what does the dream standard for an inclusive and accessible built environment, it’s that ability to move freely, to move on your own time and not question whether or not you’ll be able to go there and show up and have a good time.

Dr. Melicent Miller:
Conversations about accessibility often center on cities, but much of Virginia is rural, and I wanted to know what this work looks like in places without a transit authority or planning department. Alan grew up in one.

Alan Hejl:
It’s a perspective I rarely share, but I grew up and come from a product of rural environments, so spend enough time around me and the hick comes out and I grew up in a county, an entire county with one stoplight. And so I’m very familiar with the kind of barriers that entails. And I think from the lens of disability inclusion, it just adds, I think, to the empathy part so much more of it’s not this concept of a mass demographic that you’re trying to serve. When you’re in a rural environment, I see it more as a need to help your neighbors. I feel like in some of those rural communities, it’s a lot easier because you’re able to better craft the story of why this needs to be accessible and then you get to directly see the impact very quickly.

You kind of lose your non-realization when it comes to accessibility, which is there’s some fear in that from the perspective of people with disabilities in small towns. Everybody will know or the courage it takes to disclose that can be a little bit more of a barrier. But then at the same time, to be on the other side of it, the opportunity to help a neighbor or friend is just so much higher.

Dr. Melicent Miller:
For communities that want to act, there’s a policy tool already sitting on the shelf in most of them. Under the Americans with Disabilities Act, state and local governments of a certain size are required to designate an ADA coordinator and adopt what’s called an ADA transition plan, an assessment of the barriers in their facilities and public rights of way, and a schedule for removing them. Alan says that document is far more useful than most people realize.

Alan Hejl:
If you’re in one of those communities, hold them accountable. Show up at a city council meeting, contact your state senator or your state rep. And that’s what I found really gets attention of when you can kind of cite like, “Hey, we’re required to do this.” And it’ll also benefit us in the long run.

I’m just north of Detroit and Ferndale, Michigan, and our local government fits that ticket and it ties to transportation, it ties to housing, it ties to how we’re designing our streets. Then there’s good ADA transition plans and there’s bad ADA transition plans, but the work is kind of out there to do and it’s one of those artifacts that then gets used when it comes to master land use planning, when it comes to transportation planning. So it becomes one of these little catalyst items within kind of local public policy that can create a lot of change. And then every state is also required to have an ADA transition plan usually owned by the Department of Transportation. Not everybody even talks to people with disabilities in their community when they create it. Going back to that cross-section identity of disability where it covers neurodiversity, it covers our senses of sight hearing, it covers chronic illness. But if we’re only thinking of physical disability, it’ll be really limiting in the long run.

Dr. Melicent Miller:
Alan’s other recommendation is one every agency can act on tomorrow. Every county in this country has a center for independent living, a local resource staffed by experts with disabilities who can weigh in on local issues. But he says, this door has to swing both ways. Because the ADA is enforced through complaints and the courts, waiting to be told you have a problem puts the entire burden on the person already facing the barrier. Whether you’re a health department, a housing authority, or a transportation agency saying plainly, “We want to hear from you and this is how you reach us,” change is what’s possible. Alan shared a story about what that kind of open door can do when a health system builds one.

Alan Hejl:
A health system near us, University of Michigan, and they have the Center for Disability, Health and Wellness. And it’s this central group that they touch a lot of different aspects of how the university hospital does its business of having a path of communication to them as well was when my wife was pregnant, OB-GYN didn’t have an accessible scale. So when she’d come in for an appointment, they would ask her, “How much do you weigh?” And for early pregnancies, that’s how they’re measuring health of a baby, that’s how they’re measuring health of the mother. And we had three different nurses in one of our first visits ask her how much she weighed and she didn’t know. They didn’t have an accessible scale. Through word of mouth, somebody referred us to the University of Michigan and their Center for Disability, Health and Wellness. They had just kind of a weekly office hours that anybody from the public could just jump on all these doctors and experts within the university. And if you’re a member of the public, they would just jump on it and say, “What can we help you with?”

And so I think I presented kind of that issue of like, “Hey, we visited our OB, they didn’t have an accessible scale. I don’t have time and bandwidth to fight for everything. Is there a model or two I could recommend?” And I think it was two days later, they basically had written a white paper on different accessible scales and four different examples used within the university system. And then only two weeks after that, the OB-GYN got an accessible scale. And so that’s like one of those accessibility slam dunks.

The other aspect they helped with was we were kind of on the hunt for a doula. Knowing my wife as a wheelchair user and having a spinal cord injury, having a doula really helps with health outcomes when you’re in any hospital environment around pregnancy. And we were connected with our doula, Dr. Brandy Bentley, who had a PhD in disability studies with maternal health. And my wife gave birth to a beautiful, healthy, our baby daughter, Nora. And I consider that such a good example of being proactive with disability inclusion through that lens of health and really having advocates who are just there to help get you what you need.

Dr. Melicent Miller:
Nora was born into a country that has had the Americans with Disabilities Act her entire life, and so has nearly everyone entering the workforce today. Alan says that’s shifting the conversation faster than most people realize.

Alan Hejl:
We’re starting to see the post ADA generation come up in the United States. It’s the people who were born after 1990 who, because of a lot of the laws and policies created through the ADA, it affected our entire social system. So you have people who started school in the ’90s who had classmates with disabilities that maybe they didn’t have before, and not just from a fighting tooth and nail to be there, but by default, it’s a civil right that people with disabilities can be in public school alongside non-disabled students. And that’s just this paradigm shift that is starting to come through. And if you get the opportunity to meet a lot of new professionals who are entering the world of disability, they’re fighters. It is this just default assumption that people with disabilities belong and you don’t have to explain why. So I think that aspect has me really excited for what the future is going to be. So that’s got me really excited for, in my lifetime, we’re going to see a lot of change.

I think the one thing to understand is that disability inclusion and accessibility has to be baked into education and continuing education. And I think the example is through the course of medical school and we have several friends who are doctors and several of our health professionals in both my care team and my wife’s care team, and something we learn is that disability is really not covered well in medical school for the most part. I think I find that fascinating given the entire medical profession is based around disability and either preventing disabilities, curing disabilities, and ultimately helping people, but understanding the fundamentals of what it’s like to live with a disability, what is involved with talking respectfully to someone with a disability, understanding the barriers that can be within a medical practice. It’s all these little things that within medical education we need to have more and more of all the time.

I think too, it’s also, it’s a bit of a shift of seeing it from by us for them and more of a by us for us. So seeing disability in ourselves, seeing disability in our coworkers and recognizing that disability is all around us no matter where we’re at and it’s just recognizing it or not and making that part of our identities.
The best piece of advice I give whenever I’m educating folks is talk to your community. No matter where you are, there’s a local disability community. It might just be one person, it might just be one organization, but there’s almost always local voices who are just waiting to be heard and understood. So kind of taking that as a challenge of no matter what your work is, listen to your local disability community and treat them as experts with their lived experience.

Dr. Melicent Miller:
What stays with me from this conversation is how many of these barriers stay invisible until suddenly they aren’t. A clause about where a wheelchair can be used, a scale that can’t weigh an expected mother, a staircase between a grandmother and a granddaughter, none of those look like healthcare decisions in the way we usually think about healthcare, but every one of them shapes whether a person can work, connect, and stay well. That is public health. And as Alan reminds us, this isn’t work we do for someone else. It’s work we do for all of us, including our future selves.

Thanks to Alan Hejl for sharing his insights and experiences with us. And thanks to you for listening to this episode of Health in the Commonwealth. That brings us to the end of our second season, but we’ll be back. Season 3 is coming soon with more stories from across Virginia.
For past episodes, show notes, and transcripts, go to VirginiaPaths.org/podcast and click the follow button on Apple Podcast or Spotify to be notified when the next episode arrives. Until next time, I’m Dr. Melicent Miller.