00:00:10 Sinéad Burke
Welcome to episode two of crippling Ulysses. A podcast that explores. The friction between how we see ourselves. And how the world sees us. But what does that mean? Specifically, through three conversations, we explore the notion of disability consciousness, which Joyce was supposed to have. Within three conversations across geographic boundaries and identities, we look through the lenses of physical disabilities, neurodivergence, chronic pain to learn a little bit more about who people are. How they navigate the world and how they're observed. Today's conversation is with somebody who. Is incredibly special to me. And has had an enormous impact. On my life. And how I think about myself and the world. Alok V Menon is a poet, a writer, an activist, a thought leader. And a stand-up comedian. Over the past 12 months, I've seen them perform twice in person. Here in Dublin, at home in Ireland and at the Edinburgh Fringe Festival, and while both performances had a similar script, what I took from each of them was extraordinarily different. I've been fortunate to get to know Alok across coffee tables at parties. In intimate conversations and I am always. So moved by firstly their command of language and their use of it. And secondly, just their insightfulness in how they push us all to think. Beyond. Going into this conversation, I felt like I had a great understanding of what the output would be. There are moments when you can probably sense that. The cogs are turning live, at least for me. This conversation ends with some amazing moments. Where it's not just thinking about the practices that we all know about to create change. But actually. What role does love play? And a disability consciousness. Both in terms of how we love ourselves. And how we love each other. It's a theory of change that I haven't given much time to. But I'm going to do it after this episode. This is episode two of crippling Ulysses. I am so pleased and feel very grateful to be joined in conversation today by Alok V Menon. Alok is a writer, a thought leader, and somebody who has genuinely shaped how I think about myself. And also has given me tools to see the world from a different perspective. But I'm conscious that they're on the end of the line and me waxing lyrical about how I see them. It's probably not the greatest start to a podcast whose whole purpose is about how they see themselves. I guess to start, for accessibility reasons, I'm going to give a brief visual description of myself and then I'm going to throw to Alok to do the same. Oh, hi, my name is Sinéad and I have been your host for these three episodes. I'm a white cisgendered woman who uses the pronouns she and her. I identify as queer and physically disabled. I have brown shoulder length hair and today I am wearing. A burnt orange pangaia jumper in the hope that it feels warmer than it is in Ireland currently and I'm wearing just comfortable, leisurely trousers because it has been a long week of working from home. But Alok I'll pass to you now. Do you describe yourself visually today?

00:04:29 Alok V Menon
Hi everyone. Thanks so much for having me. My name is Alok and tell me a joke, Alok. I use they/them pronouns and it's Fashion Week, which means in protest I'm wearing a T-shirt and a pair of gym shorts and utterly unfashionable and glamorous in it. I've got multi coloured green hair. I'm being interrupted by a siren so you know that I'm truly in New York City. And I am Indian and gender nonconforming and live with chronic pain.

00:05:08 Sinéad Burke
This podcast was born out of a piece of academic research which talked about James Joyce having a Disability Consciousness, both because he himself had low vision, though he never in his own descriptions described himself as having a disability or being disabled. But in Ulysses, there are many characters who have disabilities, and across Joyce's work, disability exists, though disability is often used as a metaphor to talk to political paralysis. So unintentionally describing the ableism that exists within society. And that notion of Disability Conscious has really rooted in these three conversations. I guess. I'd love to ask, have you ever thought of yourself as having a Disability Consciousness based on how you've just described yourself there, or do you think it's something that is continuous? Work in progress for result.

00:06:04 Alok V Menon
I tend to believe that everything is a work in progress. That nothing is absolute. Everything is always becoming. And I think so often there's an emphasis with modernity, big word, that things are real and permanent. But my view of the history of time is that everything is energy and circulation. And that's why I have a very ambivalent relationship with definitions, categories and identities. Because I think we keep on trying to believe that there's one standard way to be. To be man, to be woman, to be disabled, to be anything. And I don't know if that's really the goal. I think what's more interesting to me about identity is how we all deploy them differently. And so in my life. This framework of invisible disability has always been a real provocation for me because. I think that we don't question that realm of visibility enough. Is it that these things are invisible? Or is it that they become invisible, lized? Is it that the only framework that we have to observe each other is one in which foregrounds a particular form of vision, precluding the possibility of other ways of witnessing each other? And that's why I was excited to have that conversation with you.

00:07:40 Sinéad Burke
I often wonder if. That categorization of visible. And invisible disability creates. A hierarchy both of needs and. Of who qualifies most to be disabled and how is that often articulated through a nondisabled lens, whether that's based on access to services, whether that's based on representation and really further marginalises people in a way in which identity. Is potentially supposed to create a sense of community and pride.

00:08:16 Alok V Menon
Yeah, I feel like it's, it's not organic, it's superimposed. And I think that this is the difficulty and so many of the worlds that I orbit. We just said that language and the frameworks that we've inherited don't come from us, they come from the language of biomedicine. And biomedicine’s approach to queer people, to trans people, and to people with disabilities has always been one of elimination, and has always been one of pathologization. Trying to say there's one standard body. This is what a healthy body is, and anyone who I don't even want to use, the word deviates because that's loaded. Anyone who flirts with anyone who transcends expands out of this framework. Is suspect and criminal, and So what happens often is that the only vocabularies that we have to narrate ourselves are so steeped in that history and ongoing present. Of biomedicine. And that's why I actually really turned to literature as an alternative vocabulary to describe myself, because I actually feel like writings for and by marginalised people give us so much more of an abundant sense of self. What I'm saying is I think. I would have only seen myself as lacking or as broken if the only framework I had to describe myself was Western medicine. And then when I began to read. I realised that actually maybe the reason that I have pain, and maybe the reason I live with pain. Is not because I have some disorder. Maybe it's actually because the society itself is disorderly. Maybe it's not actually my fault. Maybe it's actually that we live in a world where people are only valued for their labour and their output, not for their soul, their dignity. And maybe my pain is a result of that, the external indictment of a world rather than my internal failure.
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