New Podcast Release: Elizabeth Barnes

In the latest episode of Lives Well Lived, the podcast I co-host with Kasia de Lazari-Radek, we talk to philosopher Elizabeth Barnes.

Elizabeth is known for her influential work on disability, wellbeing, and the philosophy of health. Drawing on both her academic research and her lived experience, she challenges common assumptions – including some of my own - about the impact of a disability on living a good life.

We explore why disability is often misunderstood as purely a loss, how many people with disabilities experience flourishing and joy, and what the empirical evidence really says about the relationship between disability and wellbeing. Elizabeth reflects on how her early experiences questioning religious authority shaped her as a philosopher, and why learning to question widely accepted beliefs is at the heart of living reflectively.

In a powerful and deeply personal segment of the conversation, Elizabeth shares how her recent diagnosis with young-onset Parkinson’s disease has impacted her thinking about health, mortality, and, more surprisingly joy and the importance of philosophy.

Along the way, we discuss the ethics of prenatal diagnosis, the social significance of disability, the limits of adaptation, and how philosophical reflection can help us make sense of some of life's most difficult experiences.

Below are some highlights from our conversation, lightly edited for clarity. You can listen to the full episode on Apple Podcasts, Spotify, or your preferred platform.

Vegetarianism as a moral awakening

PETER: You mentioned your father was a religious minister and a Christian. How did you react to that? Are you still a Christian of that type, or did you rebel against it at some point? If so, what brought that about?

ELIZABETH: I definitely rebelled against it. I was brought up a very hardcore evangelical Christian. My parents are no longer as deep into that as they were when I was young. My parents are the salt of the earth. I have a very good relationship with them. I didn't rebel against them specifically, but I rebelled against that upbringing. I haven't darkened the door of a church in 20 years. I consider myself a person who is spiritual and a person of faith, but not at all in the tradition in which I was brought up.

It's always a process for kids when they develop their moral understanding and start questioning things. For me, my first acts of moral rebellion were vegetarianism and veganism. I thought about my relationship with my dog and my love for non-human animals. It didn't seem that the justifications people gave me for why it was okay to eat animals, if I also loved animals, made sense. They seemed to have feelings and experiences and could live good lives.

That was the thing I remember looking back as the first point where people were giving me a moral explanation, and I thought, I don't buy it. Once you don't buy one thing, you question other things. This has profoundly shaped my approach to philosophy and my thoughts. Probably part of what turned me into a philosopher. You take an introverted, nerdy kid and raise them in a highly ideological system. When you've had a whole worldview or ideology that you then come to question, it affects your relationship to what you believe. In my case, I've tried to cultivate a habit of mind where I try to understand where people are coming from, but it certainly has turned me into a natural skeptic in some ways.

How living with disability shaped her mindset and philosophy

KASIA: Let's try to define disability. In The Minority Body and an earlier article published in Ethics, the leading journal, you argue that we should not consider disabilities necessarily bad. You distinguish a mere difference, say having red hair, from a bad difference, like being in constant pain, and argue that some disabilities are mere differences, not bad differences. Have I characterised you correctly?

ELIZABETH: Yes. I regret the terminology somewhat because the "mere" aspect makes it sound insignificant. I think disabilities are almost never insignificant. If you live with a substantial disability, it is one of the most significant things in your life.

What I meant was distinguishing things that have a robust counterfactual correlation with reduced well-being, such as loneliness, victimisation, and despair, from other things that lack that robust connection.

Your overall well-being depends on circumstances, habits, and preferences. These can be very significant. Think about something like having children. Having children can be one of the most impactful and rewarding things in your life if you want kids, if you're in a good situation, if you have a supportive family structure, maternity leave, and so on. But having kids can also ruin your life, depending on the circumstances.

I was thinking of these things that can make your life go better, worse, or neither, but without the robust correlation people often assume between being disabled and being worse off. I’m primarily talking about physical disabilities.

What I mean by disability is not just a diagnosis, not just a medical condition. It's how you live in the world if your body functions slightly differently, the mismatch between a person's capabilities and how people are expected to function, such that you must navigate the world differently.

Very often, people assume that disability automatically makes you worse off. Or they assume there might be instrumental goods, such as perseverance through suffering, but the thing itself is still bad.

The view I put forward, and have defended, is that disability isn't quite like that. Disability can make life worse for some people, especially depending on their social circumstances, but for others, it can make life better, or it can make their live neither better nor worse.

Many of life's richest, most rewarding things are a mixed bag; they come with significant pains and struggles alongside the goods. I don't want to deny that there is loss, struggle, and pain associated with disability. Of course not. And for some people, it’s just bad. It just harms them. But I argue that while there is loss and struggle, there can also be gain. Very often, we focus only on the loss and ignore the gain.

PETER: Tell us a little more about the gains. We all understand what some of the losses are. What are the gains?

ELIZABETH: This depends greatly on the person and their circumstances, especially social ones. Disability can introduce social vulnerability or precarity; it might be easier to be harmed or to lose out. But a recurring theme, including on your podcast, is that the things that make life go well are relationships, meaningful work, and love. Having a physical disability, for the most part, if you have the right kind of social environment, doesn’t prevent you from accessing those things. In some ways, for some people, it can even augment access to them.

For example, there’s a blind woman who did a project called Great Things About Being Blind. She was honest about frustrations but talked about how she doesn't experience self-consciousness about her physical appearance. She doesn't even understand what it would be like to have that self-consciousness. I can see how that could be a good thing.

I have a friend who is deaf. She has hearing aids but uses them less and less. She likes being able to opt out of being in a big city, surrounded by noise, and retreat into her silent world.

Of course, deafness was bad for Beethoven. If you build your life around the auditory experience of music and lose the ability to hear, that's devastating.

It's not denying that losses are real. But we often underappreciate the gains, or we reframe them as inspirational stories of perseverance, when they can be genuine goods in their own right.

Reframing Parkinson’s diagnosis through philosophy

KASIA: In the afterword to your recent book, Health Problems, you revealed that when you were in the final stages of completing the manuscript, you were diagnosed with young-onset Parkinson’s disease. You almost certainly had the disease while writing the book, but you didn’t know it.

Once you were diagnosed, you learned a lot about Parkinson’s disease and you found analysing it in terms of what you had written about health was, I quote, "strangely comforting."

I feel you. Two years ago, while finishing my book on pleasure, I was diagnosed with breast cancer. I’m fine now, but then I felt: it’s so good that I was a hedonist writing about those things because I lived my life well. I was happy with how I had lived. I didn’t have regrets.

So, what was this "strangely comforting" feeling for you?

ELIZABETH: I think partly, at the end of the day, I’m just a nerd. I love information. I'm a compulsive consumer of nonfiction. I love learning about the world. When I started learning about Parkinson’s, especially young-onset Parkinson’s, it was fascinating. The brain is fascinating, and how much we don't understand about the brain is fascinating.

But philosophy is also my first love, and how I approach the world. Doing philosophy about it helped me make it meaningful, helped me process it, and was cheaper than therapy.

Writing about it and framing it philosophically helped me understand it and make sense of it. It reframed it so that I could think, "This is very heavy and overwhelming, but also, I know how to do this."

Receiving a diagnosis like Parkinson’s at 38 was shocking, it’s young, but it felt almost familiar. I had lived through other health struggles. And really, losing function and bodily decline is the human condition. It happens to all of us if we’re lucky to live long enough. This is just a more concentrated version of it.

Philosophy helped me to see that, and that was meaningful for me.

PETER: That’s quite a remarkable statement. It’s an expression of what we might call the consolation of philosophy, that thinking about your condition philosophically enables you to find something positive in the experience. Rather than thinking, "This is devastating," you think of it as an interesting experience that you will go through. Have I understood you correctly?

ELIZABETH: Absolutely. There’s consolation, but also a reframing.

You think a lot about pleasure. I've been thinking a lot lately about joy. Happiness can be a mood or an effect, but joy, for me, often comes enmeshed with sadness, pain, and difficulty.

Shortly after my diagnosis, my husband and I went for a walk with our dogs. We were sitting with it, thinking about it. He took my hand and said, "I love you, and we’re going to be okay." It was maybe the most profound moment of joy I’ve ever experienced.

It didn't negate the profound sadness. They were there at the same time - two sides of the same coin. It refocused me on how much good there is in my life.

Weirdly, doing philosophy about this, writing it, and thinking it through does the same thing. It reconnects me with wonder, with fascination, with meaning. Even in places where I have no agency, I have agency in conceptualising it.

And that is real.

Living well

PETER: At the end of each interview — and we're getting close to the end now- we ask our guests whether they've lived well. We probably know your answer already from what we've been discussing.

But you are the first person we've had on the Lives Well Lived podcast who has lived with a disability all their life, and now you’ve been diagnosed with Parkinson’s as well.

You have nevertheless lived well. Do you want to comment on that? Am I right?

ELIZABETH: Yes. I can hear the question as either a moral, have I lived rightly, or a well-being question.

In terms of being a good person, I’ve tried hard. I don’t know how much I’ve succeeded. I’ve tried to focus on small, good things I can do, but I fall short in many ways.

In terms of wellbeing, flourishing, absolutely. I feel like I have lived well. I feel extraordinarily fortunate. I’ve had such a happy, lucky life.

I've been very blessed by my marriage in particular. I have the most wonderful husband, and I love him so much. He’s the true joy of my life.

I'm able to be out in nature. I have wonderful dogs.

In many ways, having a diagnosis like Parkinson’s, I wish it didn’t take that diagnosis, but it has permitted me to prioritise the things I love most, to chase after them.

It’s not that I didn’t do that before. But I do it much more now.

It reminds me that if you're interested in disability and wellbeing, in a real "warts and all" way, I can't recommend the documentary Still about Michael J. Fox highly enough.

For me, watching that film was like watching a horror movie and an uplifting story at the same time. It was both horrifying and truly joyful.

That, in many ways, has been the story of my life.

I think about when I was in college. I knew two women. One was a professor I admired, engaging with her students, hiking with her dogs, living her best self. I wanted her life.

The other was a very thin, frail woman from my parents’ church, who walked with a mobility aid. She became my psychological bogeyman, the person I was terrified of becoming.

I remember thinking, "I won’t let that happen. I’ll work out, take vitamins."

But as I've aged, I’ve become both. I've become the woman I admired and the woman I feared.

And they are the same person.

That wasn’t what I expected. But it has been truly joyful and surprising.

Ten out of ten. Would do it again.