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Part of Ulysses 2.2, curated, presented and produced by ANU, Landmark Productions and MoLI, Cripping Ulysses is a three-part podcast series with Sinéad Burke that transports us to the heart of Eumaeus, episode 16 of Ulysses, where the central tenet is the friction between how we define ourselves, and how others see us. Taking Joyce’s disability consciousness, this podcast response speaks to people whose lived experiences transcend the intersections of identity. We create space for them to tell us who they are, in their own words.
Discover more at ulysses22.ie
Speaker 1 (00:20):
I asked Ian to play that just slightly longer than was comfortable . I think it worked . So that piece of music was designed by a brilliant disabled composer called Jacques who is part of the RAMPD collective, which is based out of the United States, which is a collective of disabled musicians. We commissioned that piece of music to start our conversation today and this three-part series laying out our intention for this dialogue as a whole. As you may or may not be aware, we have tried to model better practices around accessibility within this space and within this series as a whole. We have ISL interpreters, we have live captioning, we have a quiet room out front, and hopefully you received clear information around the accessibility of this space. But accessibility is a continuous practice that requires flexibility. And I share that in advance because at some point tonight I'm going to speak too quickly for the interpreters to keep up because I'll be nervous.
(01:26):
Undoubtedly, at some point my accent will probably be too strong for the closed captioners who are remote to pick up live on screen. But as Ben said in the introduction, there may be times where you feel overwhelmed and need to step outside to the quiet space or need to just engage or stim or be yourself in this room. Know that this conversation and the whole purpose of Cripping Ulysses is the idea that you can come as you are, which is how Rosaleen and I are going to enter into this conversation. But that was RAMPD and their piece of music and we're very grateful to them for their collaboration in part of this project.
(02:06):
So in thinking about the ways in which this conversation will tie somewhat into the themes of Ulysses and specifically the chapter that we're going to engage in, Joyce was often considered to have a disability consciousness. And I'm going to pause there because we had a great conversation prior to this afternoon talking about what sign would be for disability consciousness. Apparently it doesn't yet exist, and the rationale behind Joyce having a disability consciousness was because of his own lived experiences of disability through glaucoma. Often in the text of Ulysses, there are characters who have a disability, but when we look at the timings of the text, the way in which disability was framed, it was often used as a metaphor to talk about paralysis in Irish society and in Irish politics, which in and of itself is ableist. Joyce talked a lot in 1916 and 1917 in his own letters around the deep embarrassment he had over his own disability, being apologetic for not responding quick enough because it took him time to read and to ensure that he could write down.
(03:29):
There's many passages which talk about his own written word being almost illiterate by the time it came to the close of his life. But in many ways it talks to the reality that so often we still see disability as less. We still see that characteristic and trait as making somebody less. So I'm going to read a bit of a monologue which ties this text to the conversation we're going to have today. But then we're all going to take a deep breath because we're going to move from the academic and the literature into the literature and the personal and really share a conversation around what is so much tied to this chapter. And I'm using modern technology to do so.
(04:15):
‘The interactions between non-disabled characters and disabled characters also point to Joyce's criticism of Ireland as a prototypical nation obsessed with normalcy. Ireland is comfortable with the stereotypical representation of disability yet threatened by its condition because unlike congenital, marginal identities, disability can assume anyone at any time.’ It is very likely that it is not just Rosaleen and I who identify as disabled in this room. If so, we really have an issue. ‘In Joycean Ireland disability was not considered to be part of the life cycle of the human experience, but an invisible other within our society.’ Which brings us to Eumaeus, where the character of Murphy is unimportant and invisible. Yet a central tenett to the chapter is a modern pastime: gossip. Conversations lined with prejudices and assumptions, humor and cynicism, suspicious inquiries about who people are and how they live have such residency in even modern parlance. But what if we had the opportunity to define ourselves, to speak to the ways in which what makes us other can be unifying and sometimes a challenge. What if we created space for the protagonist and the audience to have a disability consciousness? Welcome to Cripping Ulysses. My name is Sinéad Burke. For access reasons, I'm going to give a visual description of myself.
(06:07):
I'm a white cisgendered woman who uses the pronouns, she and her. I identify as queer and disabled. I'm a little person with brown shoulder length hair. And today I'm wearing a red high neck and long sleeved dress custom Hermes, I’ll have you know, and I'm sitting in the museum - I'd love to see if they can caption that
Speaker 2 (06:30):
Speaker 1 (06:31):
Close, but no. Access, flexibility. I'm sitting in the Museum of Literature Ireland and for the next three episodes I have the honor and privilege of being your host and facilitator. Today and this evening we are going to explore the space that exists between how people define us and how we define ourselves through a feminist and disability lens. I could think of no one more wonderful to share this stage with than Dr. Rosaleen McDonough. She is an academic, a playwright, a friend, and an advocate who forged a path for so many, including me, while also giving a whole generation people tools and community to construct a route for themselves. So I'm going to put you in the easy position to start with and ask you to give a visual description of yourself please.
Speaker 2 (07:37):
I’m a wheelchair user. I have a kind of a speech impediment, which I love. It also means I talk either too slow or too fast. And when I'm too fast it may be difficult, you don't understand because I get animated, so Sinéad, you may have to rein me in . I wear glasses, which I love. I'm wearing a black embroidered dress, very much in line with Frida Kahlo, and I'm middle-aged, older than Sinéad. And that intergenerational conversation about disabled feminism is really interesting. And lastly, even though I'm Caucasian white, my ethnicity is from the Irish traveller community, but I would call myself a Pavee. That's our language.
Speaker 1 (09:16):
Thank you. And I think even with a visual description there, it gives us an opportunity to share who we are. Though I am disappointed you didn't share the color and shape of your glasses. So I'm going to go
Speaker 2 (09:28):
Back.
Speaker 1 (09:29):
And give you an opportunity to edit that.
Speaker 2 (09:34):
Well, I want to know, forget the glasses. This woman was NASA only a couple hours ago. I want to know about NASA. What were you doing, what was it like?
Speaker 1 (09:48):
That is not the point of today.
Speaker 2 (09:51):
Well, we need to know.
Speaker 1 (09:52):
Well, we'll do it really quickly and then we'll move on. Right.
Speaker 2 (09:57):
I didn't prep this Rosaleen. Her glasses are pink and they're cat eye shaped. Sorry. Okay. I was in NASA for four days in the Kennedy Space Center working with the leadership team to support them and thinking through strategies around building in accessibility and disability as part of their programming because I love the idea of making space accessible, but I think it's even more important that we make earth accessible. And they are an institution nationally and globally. And what they do matters. If anybody is a fan or uses alt text, they do some of the best alt text on the internet in terms of explaining their space exploration. See, I'm an expert. Four days, know everything . No, don't ask me about sport if that's the next question. Rosaleen, we are into a dire conversation. No,
Speaker 2 (10:52):
What I would say, I may not know what alt text this, but I think this woman deserves an applause.
Speaker 1 (11:09):
Thank you. An alt text is text that is embedded in an image specifically for those who use screen readers or who are blind or low vision, for example, can be able to access the image. So often we find now with Instagram or TikTok or Facebook, people don't necessarily provide detailed captions. So alt text is a really great way to provide access to imagery and image-based content. Alright,
Speaker 2 (11:33):
Description.
Speaker 1 (11:34):
Descriptions. Exactly. Should we get on with the show? Yes, thanks very much. Not at all. So the link between Cripping Ulysses and Ulysses, the text, is about this notion and this conflict between how the world sees some people versus how they have an opportunity to define themselves. And I think the first question that we're going to talk through from your experience and my experience is probably a challenging one based on the identities we hold. And I think what we've tried to create here is a safe space. But how does the world see you?
Speaker 2 (12:19):
I think so much how I'm viewed, it's where I'm positioned and it's a paradox, like all things in life, and my impairment and being a wheelchair user means I'm very visible. But that takes away my freedom, my anonymity, and more often than not my safety, Sinéad, I feel afraid. And I know, on your journey, you talked about being stared at and for me, it's not the staring, it's the intent of what that stare is and the violence and the aggression and the placating and patronizing. And often because of my speech impediment, a complete denial and deroding of my personhood and so is how I see myself.
Speaker 1 (14:01):
You're skipping to the next question,
Speaker 2 (14:03):
Rosaleen. No, but they're both linked in terms of when I see me, I see you. When I read a book, when I go to a play, when I read about Edith Piaf, I'm thinking ethnicity, travellers, Romas. I'm thinking critical theory has trained me. And I remember once in an airport, it was Heathrow, and I saw a woman, young woman, and we both had the same impairment and straight away I went up to her and before I got to her she said, stand up, I stood up, and we measured our limbs and our arms and then there was a whole thing about can you do this? How do you do that? And we forgot to ask each other what our names were. But for me, I'm nervous in an environment where it's all settled, it's all white, it's all non-disabled or non neurodiverse. It's all presented that we're all the same and that makes me scared and nervous and frightened because then I'm thinking, is there someone here that's alt right? Is there someone here that doesn't want travellers, or Roma or migrants? Is there someone here, that wants to kill me because I'm female? All that stuff is a constant narrative in my head.
Speaker 1 (16:22):
And it's shaped by our environment. If we think about you, were talking there about critical theory, but if we think about social constructivism, if we think about the layers of society, we're all a product of our environment or the various different systems that we're part of and formed. It's funny at the beginning you talked about visibility and
(16:45):
My experiences are somewhat similar to yours though different. I stand at the height of three feet, five inches tall and my day can span from - now we talked about humility earlier and the need to have it, this will be a moment in which I don't have it, so brace yourself. But I can go from in one day sitting front row at a fashion show in a beautiful custom made gown that is made for me. And then I will leave and somebody will call me a name, will jump over me in the street, will pick me up without my consent, will take photographs and videos because there is a currency to my visibility on their channel because I am somewhat humorous or funny or less than. While at the same time creating a career where you realize the lack of visibility is the reason why so much of this exists. But your visibility in and of itself and creating that visibility can come with a cost.
Speaker 2 (17:51):
And there's also something about as women with disabilities, we're so much nicer if we appease, if get rid of that edginess, that rough, kind of…and I find that very difficult that they were not allowed express actually you are hurting me or you're making me uncomfortable. I don't like that antisemitism and anti traveler, are they? Oh yeah. Yes. And it's all about the intent, Sinéad, and where that intend leads and what that journey.
Speaker 1 (18:53):
In 2017 I did a TED talk in New York, see lack of humility already, you're winning this game.
(19:01):
And I remember, I think I was 26, 27 at the time talking about how my independence was based on the kindness of strangers. It was a sentence and a phrase that I used and I remember my intent around that phrase was to use it as an invitation to the audience to be kind because my independence was rooted in it. I don't think I had the level of awareness or exposure or maybe access to community to realize that it shouldn't be other people's kindness that I am relying on. Though it is an immediate factor. But I also think, and to your point, I often talk in therapy and have the luxury and privilege of being able to attend therapy about being a people pleaser and the idea of being a disabled person, you're constantly relying on others to do it for you. That you are always in a position where you are looking for gratitude or kindness rather than sometimes being on an equal footing because of the systems that are at play that you can't access them.
Speaker 2 (20:08):
I don't want to be alarmist,
Speaker 1 (20:11):
Oh go on, I have therapy on Saturday. Talk to me.
Speaker 2 (20:14):
Well I'm in therapy as well. No, I suppose, what happens if that kindness doesn't happen? More importantly as human beings with or without impairments, what happens to us, to all of us when we don't expect or want kindness to each other? What does that say about
Speaker 1 (20:50):
Our
Speaker 2 (20:50):
Society, what it means to be human?
Speaker 1 (20:53):
And I think disabled people are often put on this axis or spectrum of independence, how much capacity we have, how much independence we have. Whereas I have
Speaker 2 (21:02):
None
Speaker 1 (21:03):
Speaker 2 (21:03):
And you know what, I don't care.
Speaker 1 (21:06):
But if I asked everybody in this room to raise their hand and tell me how independent they are, everybody immediately would do it. And then they'd have a think and go, actually we don't expect non-disabled people to have the level of independence that we expect from disabled people because we are all interdependent in lots of ways. Though we should strive for agency in terms of the design of places and spaces at all times.
Speaker 2 (21:36):
I suppose for us, and again I can only speak for myself, that independence, it's entangled with infantilization. So I find - I don't know about you - but I have to constantly reassert my independence when my inner monologue says, what the
Speaker 1 (22:05):
captioner definitely didn't pick that up and probably just as well!
Speaker 2 (22:10):
But there's an entanglement of Infantilization if I don't be on all the time, inverted commas, they won't see me as a grown woman. Also I'm not allowed make mistakes in the way you're not my mistake. We're supposed to have it right all the time. And also as disabled women we're shamed, why aren’t you more independent. And even around the lipstick, when I go in and I'm thinking I can't make up my mind and that would be a symptomatic of who I am, not my impairment. It's Rosaleen at her best. I am very indecisive. And also, Sinéad, independence is very male. It's overrated and more importantly, I think of people in institutions, I think of people in direct provision, their independence and their liberty is taken from them. What do we mean by independence, it’s overrated, and women like us have too much of it.
Speaker 1 (23:57):
But I think what you were saying there around infantilization and particularly as a little person and being mindful of language, some people who have the same disability as me describe themselves as a dwarf for having dwarfism or restricted growth or short stature. I use little person and I think for me clothes was the vehicle by which I wanted to illustrate to the world that I wasn't a child. And I think my interest in fashion became really rooted in that. And then understanding the lack of visibility and representation. But if I sit across from you in a custom Hermes dress, it is difficult to see me as a child. I mean it's still possible, but best of luck. But it is a deliberate effort on my part to provide a new narrative to the aesthetic and the body that I acquired and to be able to challenge that visualization for some others in a way probably because I am exhausted by having to continuously assert myself that for me clothes are a tool that I use by which to do that to the audience.
Speaker 2 (25:02):
Okay, there's three things I want to say.
Speaker 1 (25:05):
Yes, please. I'm getting comfortable.
Speaker 2 (25:09):
Can we go back into Ulysses.
Speaker 1 (25:12):
Can we? Yes.
Speaker 2 (25:13):
And chapter 16. And the character Gerty McDowell and her lame leg. And for me - interject whenever you have an idea, because I don’t really know where I’m going with this – Joyce’s cultural cache comes from the white male western canon. Yes I know, it's Jewish but nonetheless it's a very male lens and we have honored and celebrated that canon and worshipped these men for many years and there’s a whole industry around that. And for me, see I’m biased, Sinéad, I loved the Dead. I didn't like Ulysses. This is because of the depiction of disability, particularly with female impairments and that whole public masturbation and projection of male fantasy and the hundreds and hundreds of disabled women over the century that have been abused by the male gaze, be they carers, family members, strangers. But again, context is all important and I just don't buy into Gertie’s, because I don't believe her, because it's a male construct and on name, he may have been visually impaired but he didn't identify it. Now I know that different language evolves and so does writing and empowerment, but I, I'm just the aesthetic of femaleness and impairment. You have it with Laura in The Glass Menagerie and that whole desperate withering, wanting woman, bubbling over with sexuality but not knowing what to do with it and throwing herself at anybody that smiled at her. And you think that's not…
(28:40):
I know lots of disabled people, men and women, their sexuality. I suppose what I'm saying today is in the current zeitgeist, not only are we expected to be reasserting everything about us, we’re also buying into this oversexualized positioning which I think is, it doesn't matter if we're not educated, it doesn't matter if we don't have proper access to health, accommodation or whatever, but as long as we talk about sexuality and being sexual, and then we’ve made it and I'm sorry I don't buy into that, we're rounded. Does that make sense?
Speaker 1 (29:52):
To pick up on a couple of things that you shared there. I think when we
(29:59):
Deconstruct anything within the canon as you spoke to, we begin to investigate and interrogate the various lenses by which many of those stories are put forward. I think from a disability but an intersectional perspective, this mantra of nothing about us without us has never been more fundamental and key. And it is this balance between visibility and representation. But pushing forward this question of who's telling the stories, how and why. Speaking of who's telling stories, how, why and questions, just for a moment, I do want to mention to the people that are in the room that in a few minutes we're going to have an opportunity to go to them to ask either of us questions.
Speaker 2 (30:45):
You never told me that
Speaker 1 (30:47):
Speaker 2 (30:49):
Do you know what?
Speaker 1 (30:51):
I never told them that either until just now look at their uneasiness, look at their uncertainty. So if there is a question as regards to this conversation, we'll take it in just a couple of moments. But in terms of what you were sharing there around the need to put forward framings of identity in a holistic way, there seems to be a pendulum that we swing particularly in arcs and narratives around disability. We are either superheroes, athletes, people who overcome what we are defined by, or to your point, over sexual and sexualized. I think there have been some modern very good examples that are improving in terms of how we think about and frame disability. But before we go to the audience, I would love to ask you, how do you now see yourself?
Speaker 2 (31:59):
There's something else I want to say.
Speaker 1 (32:01):
Go ahead.
Speaker 2 (32:03):
When I was preparing to chat with you, there was an advertisement in the Guardian during the week, you may have seen it, it was by a fashion company and it said: ‘This winter, show your ribs.’ And it was young men and women to show their ribs. I'm thinking, have we not moved on and have we not -
Speaker 1 (32:42):
If we look to the past season in fashion, what we have seen post pandemic, and I think in many ways it is a microcosm of the wider world. We have seen this energetic return to thinness, whiteness, to the heteronormativity that was so popular and so commercialized in the past. We're seeing this across the industry as a whole. Whatever changes we felt were made around diversity and inclusion, whether that is looking to black lives matter, to trans rights, to disability rights, we are seeing so much of what we thought was once certain now up for debate. We are seeing this shift between whose voice is loudest. This notion of balance means that everybody gets to have a say rather than the notion of fairness or human rights being a common decency and a common central tenant to who we are as a society. I think fashion is indicative in both its images and the business of the industry. It is worth billions of dollars and the way in which it is continuing to move forward with this one definition of beauty, size, weight is really challenging and we must interrogate it.
Speaker 2 (33:59):
I would concur by adding in publishing and in theater, they have this facade of EDI, inclusion, diversity and equality. But yet, when they talk about waking the feminists, it was still all white, non-disabled women under 40, you know, and still very much as superficial and the rhetoric around rights has become an industry where we're rolled in, give our spiel, and then rolled out and nothing ever changes. It was very disheartening. But I'm sad for you in the fashion industry and you work so hard. You were alone in terms of alone going into that third space or that sphere where a lot of us wanted to go, but were afraid, Sinéad, our bodies…I just think you’re amazing.
Speaker 1 (35:34):
Well I think visibility alone is not the definition of success. For me, I think one of the biggest changes that I've had in my own practice has occurred in the past two years. The pandemic was a mass disabling event. There are still undoubtedly many people who would love to be here in person, but due to chronic illness, chronic diseases, just being immunocompromised, cannot be here. I'm conscious that many of us are unmasked, which is not safe for many others. And yet despite it being a mass disabling event, despite the largest number of people who died from COVID 19 being disabled and members who were members of our society who are older and in care homes and institutions, we have returned to a normality that continues to exclude so many who for the first time, maybe had equity or inclusion. For me, I'm no longer interested in what is just on the runway or in the campaign. Show me your boardroom, even better, show me your budget.
(36:44):
We can create product for disabled people. We can call it adaptive, but when 50 to 75% of disabled people remain out of the employment system and the employment opportunities, there are mass challenges about how we see and view disability. If we are only ever customers rather than colleagues, we continue to see disabled people as opportunities for transaction rather than creativity and collaboration. Which is why I think intersectionality in all that we do is so fundamentally important. Intersectionality being rooted in the research of Kimberly Crenshaw, which talks about the ways in which our multiple identities overlap. So often when we do DE&I work, we do gender, then race, then religion, then disability, then maybe class, rarely acknowledging the fact that people weave in and out of those groups as a whole, often ensuring that those who are multiply marginalized consider, continue to exist outside of our scope to include them. We're going to be kicked out of the room in just a minute. I can see Ian eyeballing me from the back of the corner of the room, but I want to create space to see if there is a question in the room. Now everybody's like, don't look at me. Hello! Can you use the microphone? Thank you.
Speaker 3 (38:11):
Can you hear me?
Speaker 1 (38:13):
Not yet.
Speaker 3 (38:14):
Can you hear me? Yes.
Speaker 1 (38:15):
No, we're good now.
Speaker 1 (38:18):
Thank you. Okay.
Speaker 3 (38:20):
You mentioned, Sinéad, DENI work. Did I hear that correctly?
Speaker 1 (38:25):
DE&I? Yep.
Speaker 3 (38:26):
Oh, DE&I. Can you tell me what that means please?
Speaker 1 (38:29):
Absolutely. I have a great colleague in the room, Rowena, and she always talks about the importance of shared understanding and sometimes we forget the lack thereof. So DE&I is diversity - so it can be a couple of things. It can either be diversity, equality and inclusion, or it can be diversity, equity, and inclusion. I am a much stronger advocate for equity rather than equality. Equality I find means giving the same resources to every person. Equity is giving people what they need based on the environment. To give you a very trite example, when I was in school at the egg and spoon race, eequality was all of us running at the same time, not acknowledging the fact that I'm three feet, five inches tall and would never win. Equity is giving me a head start. Now I would still not win because I'm Sinéad. But at least I was set up for success.
Speaker 3 (39:27):
Well if it’s any help, Sinéad, I have very long legs at school and I was called Patty last at school because I always came last in running races. So
Speaker 1 (39:38):
Kindreds spirits
Speaker 3 (39:39):
A very minor disability,
Speaker 1 (39:41):
But I think what you're proving is
Speaker 3 (39:42):
Can just say again because I have very short memory as well. Say again. What disability is it? Can you say again what it means?
Speaker 1 (39:50):
So disability, diversity, oh, sorry. Thank you very much. Diversity.
Speaker 3 (39:54):
Diversity.
Speaker 1 (39:55):
Equity. Equity and inclusion. So it's a framework to think about redesigning systems. So it should never exist as a separate pillar. But should be a central methodology to everything we do. So I usually ask two questions to try to move us from awareness to action. The first one: is this accessible? And watch people panic.
(40:21):
And the second one is, who's not in the room? Knowing that the room can be in person or virtual, it moves us from the point of passivity, particularly from disability. Our advocacy often stops because non-disabled people in particular often say, well what about if I say the wrong thing? For too long we have prioritized non-disabled people's embarrassment over disabled people's access. So you say the wrong thing, so you make a mistake, so you feel embarrassed for a moment. There's this great quote where people talk about the fact that disabled people have never been more visible. The reality is disabled people have always existed. Society was inaccessible and ableist and in many ways continues to be. To be mindful of timing -do you wanna come in?
Speaker 2 (41:13):
Maybe you could say something about we are producers of knowledge. We are not always…this idea that we…when I read a book or see a play, I'm looking for bits of my identity. But also I think, disabled people, regardless of our impairment we're really clever and we’re producers of knowledge.
Speaker 1 (42:05):
Yeah, I talk about disabled people as being innovators by design, because we've had to be, because we live in worlds that were not designed for us. So the concept of being creative is often fundamental to every disabled person, be you neurodiverse, have a chronic illness, congenital physical, visible in disability. There's a whole spectrum of us. And I think bringing that mindset to how we think about, talk about and prioritize disability is really key. But I want to thank sincerely Dr. Rosaleen McDonough for sharing in this extraordinary conversation this evening. I think you deserve the most enormous round of applause. The three episodes of Cripping Ulysses are going to be available on Spotify, Apple, or wherever you get your podcasts. For access reasons, this will be available in a video format, in an audio format, and there will be a transcript also. if people would like to avail of a plain language version of that transcript being mindful of the content, please email us at accessibility@tiltingthelens.com, which the interpreter is going to have a nightmare finger spelling.
Speaker 2 (43:35):
.
Speaker 1 (43:37):
I wanna be very mindful and thankful of those who provided the access accommodations for this evening. I hope we continue to see better practices like this in all venues. I wanna sincerely thank Landmark, ANU, MoLI for their collaboration and participation this evening, but I would love for you to give an enormous round of applause to Gráinne Pollak who is at the back of the room and hiding who has been a producer and really just, Gráinne, do you wanna make yourself known there? Yeah.
(44:16):
At many points in this year, Cripping Ulysses was a possibility, but rarely an eventuality. And for us all to be in this room and online feels like such a success. Lastly, I want to thank my colleagues at Tilting The Lens, Áine and Emma, who have been just so exceptional in bringing this event together with such kindness in a way that is not expected, but always nice to receive. Thank you very much to all of you for joining us in person and those who have joined online. I wanna thank the tech team for figuring out access at the highest possible levels, sometimes in the moment. And I hope you have a safe trip to wherever you are going to next. If you have questions that you didn't get to ask, please do email them to us and we'll include them in the follow up conversations. But for now, I ask you to safely and as fast as you can, exit the room as the team at MoLI need us to move to other events as part of First Fridays. Thank you very, very much and have a lovely evening.