Gemma:
Thank you so much, Shane, for having this conversation with me. I wanted to start by just explaining how we know each other. We know each other from teaching medical ethics in the Faculty of Health and Medicine (FMH). I ended up there because I’m from History and Philosophy of Science, and I teach a lot of ethics. How did you end up there?
Shane:
I’ve got a background as well in ethics, and I have a disability. So that combination of the lived experience of disability, in my case, spinal cord injury, and the background in ethics got me the invite.
Gemma:
What about disability that brought you to ethics? Were you interested in ethics prior?
Shane:
No, I’ve been teaching Christian Ethics at a theological institution for a decade prior to my experience of spinal cord injury and disability. It’s the richest field. It’s an examination of life, why we do things, and whether we should do them. All the key issues of life are ethical. I was most passionate about justice issues in the church, especially LGBTQI+ inclusion. The church’s ethics are terrible when it comes to queer justice. And I have a philosophical interest in virtue ethics — philosophers such as Aristotle and Aquinas and some contemporary virtue ethicists such as Alistair McIntyre.
Gemma:
Let’s return to that in a moment. I think we share that background of not beginning in disability ethics. While I do other research, I got into academia because of ethics. I did my first year of Philosophy with Peter Singer and I did Environmental Science after that, so environmental ethics was my number one love. My second was animal ethics and animal rights, animal liberation. And I feel like those are justice issues, too. And so really, what I was interested in was justice. I feel like that’s similar to your story. And interesting, isn’t it?
Shane:
Yes. With my theological background, Peter Singer was the enemy – a utilitarian, anti-theist. He came to conclusions that in Christian ethics are incredibly problematic, such as his positions on abortion. I later discovered that in disability, Singer was even more reviled for his utilitarian views on late-term abortion of the disabled foetus, even post-birth killing of the disabled newborn. Although weirdly, over time, I’ve become more aligned with Singer’s ethics than I once was, even if I disagree with many of his conclusions.
Gemma:
That’s so interesting, because I feel like I really started as a utilitarian. Utilitarianism is basically the greatest good for the greatest number, and you define your good as wellbeing or happiness or what have you. It’s about consequences. And that really defined how I established myself as an ethicist. But now, after engaging with Singer’s work on disability, especially in the last few years as he has published defences of eugenics, I can’t say that utilitarianism is necessarily my one great love anymore. And I have a soft spot for virtue ethics.
Shane:
Yeah, so look, I guess my background, in terms of ethical theory, had two different sources. Rather than focus on utility, consequences and the greatest good, the first was based on theological principles. Christian ethics draws on theological ideas such as the inherent value of humanity, made in the image of God, the goodness of the created world, and the problem of sin and injustice. It’s driven by principles rather than consequences.
The second was virtue ethics, which is about the person, the individual performing the ethical act. Virtue ethics is about character and principles of virtue. When I had my spinal cord injury in 2010, I used virtue ethics to help me through the crisis. The underlying logic of virtue ethics is that happiness, the good life, is achieved by living virtuously and exercising character traits; such as love, joy, peace, patience, kindness, compassion, and various other virtues.
I’d experienced this life-changing horror, where I’d lost my sense of happiness. Spinal cord injury was hard to live with, especially early on, and I was desperately unhappy. Virtue ethics became my way of thinking about happiness, about how to thrive or live well through pain and suffering.
Gemma:
When I developed Meniere’s Disease, the idea of maximising the good and only allowing or promoting happiness, or wellbeing or flourishing – above all – well that no longer really satisfied my need for complexity in ethics. I feel like now I’m a pluralist.
Shane:
When I said I’ve moved toward utility, I should clarify what I mean by that. Spinal cord injury and some problems with the Church led me to a crisis of faith. Many of the old theological principles driving Christian ethics became extremely problematic to me. I was, you know, just extremely frustrated with ethics driven by rules and regulations. Biblical legalism (any form of legalism) gets my blood boiling, because it locks ethics into rigid boundaries. And even virtue ethics can be problematic. It can get tied up with the positivity myth, with ‘overcoming’ disability.
Sometimes there’s a reason we can’t exercise virtue, because injustice damages us. The vices – such as anger, frustration, impatience – may be a product of the social situation we live in. And sometimes we should be angry, even if we pay a psychological price. So I could see a bunch of critiques of virtue, ethics, and then I guess, even, you know, the disability experience and the queer experience got me thinking about consequences. And so I don’t buy into utilitarianism, the greatest good for the greatest number, because you cannot evaluate that. It’s an impossibility and it ends up with nonsense results.
Gemma:
Yes.
Shane:
But to me, I think a combined sense of virtue ethics and utility is where I’m probably at, which is “do no harm”, so consequences can help a person to flourish. It’s about what decisions can I make that reduce harm and that enable flourishing? Virtue and character can be part of that. So that’s not really Peter Singer, but at least aligns with his focus on consequences.
Gemma:
You’re right that’s not quite Peter Singer, but it’s very close to what I think as well, actually. And that development of moral character virtue ethics is really important. So on that, what do you think is the most pressing issue in disability ethics today? I’m spending this week at a mental health conference. And I think one of the most pressing issues is, in fact, how to integrate the full spectrum of disability and related kinds of disorders, and the complexity and the diversity of the disability experience into our understanding of disability, but also service provision within disability. I think it’s one of the things we don’t do very well at all, and mental distress and ill health often gets left behind.
Shane:
I agree, I think we assume we know what people with disability think, and that there is one disabled view on ethical issues, such as disabled people are against euthanasia, worried about the pressure to end disabled lives. Yet, diversity of impairment is the essence of the disability experience. And that diverse impairment should lead to diverse perspectives and diverse ways of thinking. Many people with disability support euthanasia. The celebration of difference shouldn’t be just the celebration of impaired difference. It should open us to appreciating ethical diversity.
Gemma:
Yes. And my next question for me follows on from that – what would be your best piece of advice for disability advocates and activists coming into that sphere today? My advice would be that over time, what I’ve realised is that, whilst I can be sure of my own ethical position – although I grow less sure of it over time – and whilst I can feel like I know what’s right, that’s not going to be the same for everyone. And if I want to convince someone of anything, of the importance of anything, what I should look for is shared values. But I wonder what advice you would give to emerging disability advocates or activists?
Shane:
Ethics is a reminder of how complex and grey the world is and how little we know, and it’s important for advocates to be open to diversity even when fighting for a cause. When I was a theological ethicist, I was surrounded by religious people who were so sure about what is right and wrong and very judgemental of people who disagreed with them. At its best, theology and ethics are a deconstruction of our certainties as we encounter different ideas and people whose experiences and outlooks are radically different to our own. At its worst, theology and ethics are narrow, legalistic, self-righteous and terrifying.
For a good reason, advocates are passionate about their causes. But passion sometimes leads to dogmatism and certainty that mirrors religion. So in the advocacy space, we need to find a balance between commitment to the rightness of our fight and awareness that there are different ways of looking at things. Our way is not the only way, and it might not even be the right way!
The other thing I’d say to advocates is to learn from groups outside your own fold. Disability advocacy has so much to learn from feminism and queer advocacy. People who have experienced exclusion should work together and fight for a world where everyone is welcome.
Gemma:
Yes. In diverse, colourful, different wild ways.
Shane:
I love it. Wild ethics.
Gemma:
Wild ethics rather than constrained by logic is, you know, just wild like the world is. Now we’re sounding pagan.
Shane:
I’m delighted to sound pagan.
Gemma:
I’ll just finish up by asking you one last question. What do you think is the most important thing happening at Sydney University in terms of disability ethics right now?
Shane:
Oh, that’s a tricky question because I feel a little disconnected to Sydney University at the moment, as all my headspace has been in the Disability Royal commission. But let me sell the brilliance of the Centre for Disability Research and Policy, which I’ve been connected to for a decade.
I love the Centre. I love the director, Jennifer Smith-Merry, and all the faculty and staff, who are committed to learning from people with disabilities and shaping inclusive policy.
The Centre is meant to gather people from across the University, but I don’t think it gets the attention or the participation it deserves. Disability is a marginal topic, but it shouldn’t be. Disability is about the human condition. It’s about our vulnerabilities and dependencies, our social experiences and constraints. Disability can help us think differently about ourselves and the world around us. I’m biassed, but I think disability should be a foundational study for all disciplines. How different would medical science be if doctors studied disability not as something to be fixed or cured, but as an essential and wonderful aspect of human life? What could engineers learn from disability concepts such as universal design and the social model of disability?
Gemma:
Yeah, absolutely. I teach plenty of medical science students, and engineering students occasionally, disability ethics for the first time, and it’s often right at the end of their degrees. And I find it incredible that they haven’t encountered at any point, any critical view. When it comes to disability, they haven’t engaged with questions like what kind of people there should be in the world, they just assume that we don’t want disability and illness. We just want to fix it and cure it.
Shane:
That’s true in all professions. The Disability Royal Commission exists because of ableism in every profession; negative, paternalistic and dehumanising attitudes to people with disability that lead to violence, abuse, neglect and exploitation. People are not deliberately antagonistic toward people with disabilities. They just don’t know much about disability, that disabled people can flourish, and that disability makes a rich contribution to our world. Since Sydney University educates future Australian leaders and policymakers, it must take disability seriously. After all, we are all either disabled, or heading toward disablement of one kind or another.
Gemma:
Okay, thank you so much for this chat. It was illuminating, and I hope it will be interesting to everyone who’s reading it.
***
Professor Shane Clifton is Professor of Theology and Ethics, Honorary Associate at the Centre for Disability Research and Policy, Faculty of Health Sciences, the University of Sydney, and Director, Respect and inclusion, at the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. Shane lives with quadriplegia.
Gemma Lucy Smart is a PhD Researcher in the School of History and Philosophy of Science at the University of Sydney, working on critical perspectives in mental health, psychiatry and neuroscience. She is also the Deputy Disability Equity Officer in SUPRA. She lives with complex dynamic disability.
