Dr. Kara Ayers on Disability, Connection, and Empathy
Dr. Kara Ayers knows the importance of empathy to change hearts, minds, and actions. From navigating a disability, finding community support, expanding her research and prolific career, lobbying policymakers, and raising her family, empathy underscores Dr. Ayers’ life. The summer sun poured into her brightly colored office at Cincinnati Children’s Hospital as we talked about why community connections change lives, what’s missing when we talk about disability, and how we can do better in caring for each other.
Interview by Olivia Taylor. Photography by Stacy Wegley.
I wanted to start with where you are today and your professional journey.
I am an associate professor here at Cincinnati Children’s in the Division of Developmental and Behavioral Pediatrics. We have a number of different grants, and each of them has slightly different focus areas, but they all fall under our major project. I'm the Associate Director of UCEDD. At the University of Cincinnati, it’s the University Center for Excellence and Developmental Disabilities.
We work on a number of disability-related issues, research, training, and information dissemination – making sure that people with disabilities and their families know about what resources are available and what policy changes are coming. Policy is a large area of passion for me. I keep track of what's going well, what's not going well, and what changes could be coming up. I'm trained as a psychologist so, in some ways, it feels that what I do now is very different from what I thought I would be doing. I still definitely apply all of those skills, ranging from research and data analysis to understanding how people work and nuance.
I really love what I do, and it looks different every day. I know that our world is better with greater inclusion of people, including disabled people. I see it as not only working for and with people with disabilities like myself but to make a better world for all of us.
Are there certain policies that everybody should be aware of concerning disabilities?
So of course we keep an eye on things at both the federal and state level primarily, but sometimes local things come into play. An exciting project and policy that I had a chance to work on for about seven years from start to finish was Senate Bill 202. It's an Ohio bill that prohibits discrimination in parenting or custody on the basis of disability. It gave me a chance to see the full lifespan of a policy.. We were part of a group that had introduced model legislation for the National Federation of the Blind. At first, the bill was just going to prohibit discrimination in parenting for people who are blind. We actually got some pushback from one of the members of the State House at that time who said, “I can't possibly imagine a person who's blind being able to be a parent.” So we said, “Well, let us introduce you to your constituents, Ohioans, who are blind and parents.”
It was really fascinating because this person had been a staunch opponent, but after meeting with actual blind parents, they said, “I totally understand this now and why is it only people who are blind? Why don't we widen and broaden it to parents with disabilities?” Which was always our hope – we just didn't know if we could jump into that. So the next time it was introduced, it was prohibiting discrimination on the basis of disability.
In the previous Ohio code, children could be removed from the custody of their parents on the basis of physical disability, psychiatric disability, or substance abuse alone without any due cause. While it rarely happened where CPS would randomly take children, it did happen in divorce proceedings. So, if one party of a divorce was disabled, they were automatically at a huge disadvantage for custody. I also have worked with a number of Ohio mothers who have had CPS involvement at the hospital before they even had a chance to parent because they're often cited as “concerns by the nurses,” when really it's a lack of understanding. That was heartbreaking to see what should be a really happy moment for a family to be the start of a long journey to be able to keep their family intact.
In the Ohio legislature, if you don't get bills passed in a certain amount of time a lot of times, they get put on the back burner for other more pressing or newsworthy bills. That happened to us for several years. Then, last year, we finally got enough momentum and support from legislators because, over the years, we've worked to educate legislators about why this was important.
The bill finally passed and went into effect in April of this year, and now we are doing the work of educating people about it such as judges, lawyers, courts, and child advocates. It's an exciting time to be able to figure out how we can make it matter now that it's passed.
Often, we try to gather stories of how this will affect Ohioans with disabilities and make sure that their stories are heard at a national level. For example, people with disabilities who live on their social security benefits and how those have not been updated or increased in years and they're completely out of scale of even living in a one-bedroom apartment. We try to make sure perspectives from real people are heard in those discussions too.
That brings me to my next question for you and that is how intersectionality plays into your work. Not everybody has just one identity and there are socioeconomic factors, race, gender identity, all those aspects can affect somebody with disabilities not getting the resources they need.
One of the grants that I’m a principal investigator on is the National Center for Disability, Equity and Intersectionality. Our national center looks at a broad range of issues. Right now, we're tracking school shooter response plans and the bills that each of the 50 states has. Then look at those to see if and how they incorporate disability into that – recognizing that students with disabilities have a shared experience in this and a unique experience. The idea for things like school shooter drills are more harmful than they are helpful based on perhaps disability but also exposure to police in their history, exposure to police in their neighborhoods, which may be traumatic in relation to racism and law enforcement. So we’re looking at these policy issues and how race factors into disability access, how socio-economic status, how gender and gender identity factors in – it is complicated.
We’re also talking about the need to cross state lines as a disabled person to get healthcare and how much more complicated that is. We as a society are almost being forced to think about these questions because we have this patchwork of access. Basically, whether you're looking at transgender care or abortion access, it's different than it was a year ago and five years ago – and when you add the layer of disability onto that, you have transportation concerns. A person with a disability may not be able to drive themselves across the state line. Then, you also have equity concerns in terms of private insurance, which is usually more flexible from state to state than Medicaid.
Intersectionality is so much more than a buzzword; it has to be embedded in our practices, or else we're missing a huge piece of the picture.
I wanted to talk about how, in recent years, there has been an increase in advocacy and support of people with invisible disabilities such as autism or people with chronic pain. I'm interested in your perspective on what those discussions and changes have looked like and how they evolved over the past few years.
It’s been interesting to observe, and I think we're trying to break free from the exclusively medical model of disability – looking at disability as kind of a symptom list and as inherently a deficit in the individual versus a social model – looking more towards society and seeing what barriers are present. Now, we absolutely consider self-diagnosis to be valid, but what does that look like? You may not have equitable access to resources that somebody who has that letter from their doctor has. I learned a lot from this community too; if they identify as disabled like I do, they have a completely different experience in terms of disclosure.
If I'm in a physical space, I’m in my wheelchair, that’s disclosure enough, and it's up to me as to how much more information I add about my identity. One of my mentees that I work with explained it really well – she said, “You know, I have a physical disability, so in some cases, I want to disclose that with the person seeing me so that I can clear up any assumptions they may make about me,” but when she was referencing her invisible disabilities and she said, “But my invisible disabilities are different, and I worry that people will make assumptions once I disclose.” Disclosure is a big, complicated ball with no right answers.
How does community factor into your work and what does the community around people with disabilities look like?
Historically, disability advocacy circles or communities have been too white. They have been dominated by white cisgender men, and so we need to actively work to diversify them.
As I grew up, I found that my identity and community were not really attached to my specific diagnosis. I have osteogenesis imperfecta; my bones break easily, and it is a type of dwarfism. My mom really prioritized trying to get me to national conferences. She saw the importance of connecting me with a community in that way, and it was really meaningful to me as I formed my identity. I still love that connection and value it, but I also think I see now that I have as strong if not stronger connections across disability. The community is more identity-driven than diagnosis-driven for me. Somebody might have the same diagnosis as I do but may think very differently about disability. That’s actually often the case. Disability is very medicalized, and if there's pain involved and lots of medical treatments, some people don't necessarily connect to that cultural experience. I do, and for that reason, I'm really grateful to realize that the disability community is not necessarily fragmented by having to stay in your diagnosis bubble.
There has been an ever-evolving conversation about how we talk about people with disabilities, especially how people who don't identify as disabled talk about disabilities – whether or not we should say “differently abled” or “disabled people.” People don’t want to say something wrong, but there has also been more voice given to those in the disabled community about it. What is your perspective on this language conversation?
I love that we have these conversations. It's part of evolving the way we think about disability; it’s bringing us into the conversation. I know that there can be some frustration of, “Just tell me what to say.” But I love that people think about it and talk about it.
The advice I give, and the advice differs a little bit whether I'm training a resident who's working with patients and their families or whether I'm talking to journalists, but typically, the advice I give is when in doubt, make sure that you're going to use the word disability or disabled in some context. Try not to skew too far up from that. Euphemisms signal a kind of discomfort with saying the word “disability.” It’s indicative of discomfort with disability which we all have to work through in different ways.
So whether people use person-first which would be “person or people with disabilities” or identity first, which would be saying, “I'm a disabled woman,” I think is fine. I tend to go back and forth between both. If I introduce myself, I say “I'm a disabled woman,” but I teach and often still use person-first. I have a lot of colleagues with intellectual disabilities who prefer person-first, so there's no one answer, but it's a journey of thinking it through.
A more controversial, discomforting topic is the idea of “curing” disabilities. So, can you elaborate a little bit about what that conversation looks like?
I think one of the challenges with this is that we know, and actually some fascinating research has shown, that the word “cure” is powerful in terms of fundraising. Even just using that word, you can usually get more donations. It’s just one of those not only controversial but leveraging words. So, I always ask people to take a step back and think about what they are actually thinking or hearing.
I think it comes from a weirdly young revelation that I had as a nerdy adolescent. I would see these campaigns for donations to cure my disability. One day, I remember realizing even if I took a pill tomorrow that would make my bones not break as easily, which would be great, it wouldn't change my bone deformity from what I already had. It wouldn't change my scoliosis. It wouldn't make me grow – I'm four foot three. When we say cure, we don't really think through what we are really giving.
What are we really talking about when we say cure? Sometimes, what we're really talking about is more along the lines of eugenics in terms of genetically testing for and eliminating disability in that way.
I’m a researcher who studies these kinds of things, so I’m not necessarily opposed or in favor of that. I'm more on the side of trying to understand people's reproductive decision-making – that is what I study as one of my branches of research. We need to be honest about what we mean by cure. Are we talking about people who are living with the condition now, or are we talking about eradicating it for future generations because we are able to identify it? Would we either terminate the pregnancy or genetically alter it in some way? Because that's increasingly a possibility with our technology.
I hope the world is not cured of all disabilities because I think it would be worse off. We would lose a valuable piece of the diversity of our planet.
How do you establish boundaries between your professional life and your personal life and protect your mental health?
My training in psychology gave me good pillars of boundaries and confidentiality – recognizing that I can have certain personal opinions that may or may not be reflected in what I'm researching or studying. I think advocacy burnout is a real thing; I care about all kinds of causes; that’s just my personality, but I try to be careful about piling too much on myself. I try to take time to recharge and reconnect. With my kids, they make it pretty easy to stay grounded. I have a 6, 13, and 16-year-old, and I want a better world for them, but I also want to enjoy the world that we're in today with them.
What is your perspective on empathy in your work?
I love learning about empathy. Actually, I was just listening to Adam Grant who is one of my favorite authors and psychologists. He was highlighting this study about how leaders who are more empathetic are more successful, and that held true even at hedge funds. It's nice to hear that good leaders are empathetic leaders. He added the clarification that it’s not putting yourself in their shoes but thinking about what it would be like to be them in their shoes, which is slightly but importantly different.
I definitely try to do that in my work from the ground level of individuals with disabilities who may have different marginalized identities from me and also up to policymakers. I'm really interested when we work with policymakers and we try to educate them about connecting them to disability issues. What is the barrier to them understanding or connecting with this? Is it as simple as that one policymaker who just couldn't imagine because they’ve never had experience with a parent who's blind? So it’s about trying to unearth it, and it takes empathy even if it's your opponent; you've got to understand how they're seeing it.
What are some of the challenges in getting people to recognize or connect with this line of work?
One of my challenges is getting people to drop their defenses when I talk about something like ableism. Ableism is discrimination experienced by people with disabilities. So if I bring up that word, I feel sometimes a wall comes up like, “Well, I would never do that.” And yes, you don't mean to do that, but I want people to lower that wall to realize we're all doing it sometimes because it's built into our system.
I use this image when I teach about ableism, which is to think about a black-and-white smokestack at a factory with smog around it. We've all been breathing this smog – the messages that disabled lives are less worthy. Sometimes, it's very explicit, such as the news coverage when Senator Fetterman was struggling with his speech after a stroke.
Other times, we don't see. When we go to the store, we never see products with representative advertisements featuring people with disabilities or in movie roles we never see representation. Either way, we're breathing in all of that smog not because we're intentionally trying to be mean or trying to discriminate against people but because we have to actively work to get that out of our lungs. We have to put on our smog masks and help other people with their masks.
One of the hardest things is helping people recognize ableism. We know more, we know better, we do better, and we're in this together.
Who are the women in your life who inspire you?
Brené Brown – I’m super motivated by her work and connected to a lot of her messages around imperfection and shame. I feel like I can apply it to all facets of my life ranging from my own parenting to leadership at work. My mom taught me a lot about identity development. She's not disabled, and now that I'm a mom I look back at how she worked to forge an identity that was not her own is a core piece to reflect on.
Bringing it home here to Cincinnati Children's is Dr. Patty Manning who just retired. She was in service for decades, but I admired her leadership during COVID. It was such a stressful time not just for our hospital, and she was leading the helm with the hospital decisions. My husband and I were high risk, and she sent weekly updates, and she was a lighthouse in the storm. I could go on and on – I'm really fortunate to be surrounded by a lot of strong leaders who are women.
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