Challenging the Status Quo: Sinéad Burke’s Journey of Disability Activism

October 17, 2023

October is National Disability Employment Awareness Month which celebrates the contributions of workers with disabilities past and present. This week’s guest is the incredible Sinéad Burke, whose work is centered on raising the baseline standards in accessibility, to design an equitable and accessible world. Sinead is a writer, academic, podcaster and disability activist, popular for her TED talk 'Why design should include everyone'. She is the CEO of consulting organization Tilting the Lens which she founded In 2020. There, she leads a talented team of people to create accessible and equitable solutions through education, advocacy and design. Her clients include Gucci, Ralph Lauren, Netflix, Pinterest and Starbucks. She has graced the cover of British Vogue not once, but twice. She was the first little person to ever appear on the cover in the 2019 “Forces for Change” issue and in May of this year in the ”Reframing Fashion” issue. Sinéad’s work is centered on raising the baseline standards in accessibility, to design an equitable and accessible world.

- Hello, everyone. I am Chris Hyams CEO of Indeed. My pronouns are he and him. Welcome to the next episode of "Here To Help." For accessibility, I'll offer a quick visual description. I am a middle-aged man with dark rimmed glasses. I'm wearing a black t-shirt. Behind me are books and LPs. At Indeed, our mission is to help people get jobs. This is what gets us out of bed in the morning and what keeps us going all day. And what powers that mission is people. Here to help us a look at how experience, strength, and hope inspires people to want to help others. October is National Disability Employment Awareness Month, which celebrates the contributions of workers with disabilities past and present. Its aim is to showcase supportive, inclusive employment policies that benefit employers and employees. My guest today is Sinéad Burke. Sinéad's work is centered on raising the baseline standards in disability, inclusion, and accessibility to design an equitable and accessible world. Sinéad is a writer, academic, podcaster, and disability activist, popular for her TED Talk, "Why Design Should Include Everyone." Through writing, public speaking, lecturing, and social media, she highlights the lack of inclusivity within the fashion and design industries. She has visited schools, workplaces, government agencies, and the White House to facilitate honest conversations about education, disability, fashion, and accessibility. Sinéad has graced the cover of British Vogue, not once, but twice. She was the first little person to ever appear on the cover in the 2019 "Forces for Change" issue, guest edited by the Duchess of Sussex, Meghan Markle. In May of this year, she was featured on the cover for a second time in the "Reframing Fashion" issue. Sinéad is the CEO of consulting organization, Tilting the Lens, which she founded in 2020, leading a talented team of people to create accessible and equitable solutions through education, advocacy, and design. Her clients include Gucci, Ralph Lauren, Netflix, Pinterest, and Starbucks. She consults with leadership to ensure the process of designing for, with, and by disabled people is embedded into their business model. Sinéad, thank you so much for joining me today.

- Thank you so much for having me. It is such a treat to be here. And to mirror, I think I'll give a brief visual description of myself. 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 that is kicking out and misbehaving today, and I am wearing a white t-shirt and currently in a hotel room with much less of an aesthetic backdrop than you, Chris. But thank you for having me on the podcast today.

- Let's start a bit broadly. We're talking about accessibility. Can you define what accessibility means to you and what it means to you personally as well as professionally in the work that you're doing?

- My definition of accessibility has truly evolved. As I talked about, I'm a disabled woman. I'm a little person, so I stand at the height of around three feet, five inches tall, or 105 centimeters. And my insight, curiosity, and exposure to accessibility has become and come out of that lived experience. I think, for me, in terms of my definition of accessibility, it's often being mindful that in order to get up onto a chair or a table, I might need support from a footstool. Or if I'm staying in a building or a space, I might have to do preparation in advance to ensure that I can access the building with agency and with autonomy. But I think in my work, how my understanding of accessibility has evolved has been challenged by the definitions of accessibility that exists in the world. As you mentioned previously, I have done some work in the fashion industry and the fashion industry often describes certain echelons within the system as accessible luxury. And what they mean by that is that it's more affordable, not that it's explicitly or specifically designed for disabled people, and one's definition of affordability is deeply subjective. But even when you look up the definition of accessibility in the dictionary, it's limited. It often talks about things that were once hard to reach to now be in reach. And even when we look at legislation, what is defined historically as being accessible or good practice in accessibility is often about, rightly so, serving the needs of wheelchair users, for example. But for me, I look at accessibility as a holistic practice, one that's end to end. So I think about accessibility as something that is iterative and continuous, and the idea that was accessible yesterday might not be accessible tomorrow. And for that not to feel overwhelming, but encouraging and for us to be opportunistic about what presents it to us as. I think accessibility has to be defined by those who have lived experience of exclusion because they understand the friction that takes place between them and the world. I think it needs to be part of every single stage of a process. So if you're developing a product at Indeed, for example, it can't be something that comes in when the product is built and we look at the WCAG 2.2, which is the legislation defining digital accessibility. But we have to bring it in from the very initial conversation and that iterative process being able to follow through. And I think, fundamentally, where some of the definitions of accessibility are challenges that in terms of what the outputs are, so often we design for disabled people, rather than with them or creating co-design frameworks for disabled people to have that power and authority to create that decision making themselves. But I think true accessibility builds agency, equity, pride, and dignity, and that it is in and of itself a design process. But I think one of the other things that is important to keep in mind around accessibility is that accessibility is nuanced, that what creates accessibility for me might create inaccessibility for you. And that access means different things to different people, and it might mean different things to the same person on different days, which I think can often lead people of thinking, where do we start or how do we even begin to do this work intentionally? But the idea is that it is a gradual iterative process and we do it with as many people as possible.

- Yeah. Thank you for that. It reminds me of the conversation that we were having actually earlier. Maybe we could spend a minute and define the word disability. Disability is contextual, which I think is what you're getting at, that there are certain things that might be inaccessible at a certain time for people in a certain context. And you talked about this recently in a video on Instagram where you said, "I'm disabled because I live in a world that's not designed for me." Can you talk a little bit about that, what you meant by that and how people like myself who had maybe not thought about that before, what we can take away from that?

- If we look at the history of disability, and even if we take it from a US context, for example, the Americans with Disabilities Act, which is the most advanced legislation, is only 33 years old. It's the same age as me. And if we look at the models and the timeline of disability, it's not so long ago and still in some parts of the world, and even in countries like the US or Ireland, eugenics and the medical model take shape. But we have advanced to the social and the rights-based model. And I think, historically, we have often taught about disability being something that makes us less. And by that, I mean deficient or not as functional, not as valuable to society, not as valuable to us ourselves as people, the non-disabled people. For me, I really like the definitions of disability that come from the social model and the rights-based model, but specifically that the World Health Organization is beginning to narrate and include, which is how disability takes shape when it is a friction between the individual and the environment. And what that means is, for example, if I am getting a bus, I am disabled because that bus was not designed with me in mind as a customer and definitely not as a bus driver in that maybe there's a ramp that comes down, maybe it can come to the curb. When I go to pay, that payment system is probably too high. My disability results in the lack of thoughtfulness, planning, and design within that moment, rather than the fault being with my body and with me as an individual. And how do we think about that mismatch as a design opportunity in all of the products, and services, and policies that we create? And how, in terms of that, being disabled by design... To give you a classic example, I recently moved into my first home, and the very first thing that I did was pull out the kitchen because I couldn't be independent in that space. And I have a kitchen that is now, by my own definition, beautiful, but accessible to me. The counter heights are at 60 centimeters tall, which means, Chris, if you were to be in my kitchen and to cook me dinner, which I hope happens at some point, you would experience inaccessibility and, in many ways, that friction between the individual and the environment because it wasn't designed for you in the way in which most places are. So how do we think of that as not something that creates shame for the individual, but actually as a responsibility and accountability in the work that we collectively do?

- So I want to talk a little bit about... obviously, Indeed is a business whose mission is to help people get jobs. And when we think about the world of work, and the reason we're having this conversation is that for all of the barriers that disabled people face, work is an incredibly significant one. It's estimated there's over a billion people worldwide that have a disability. And it's also estimated that about 90% of workers with non-apparent disabilities choose not to disclose them due to discrimination or fear of discrimination. Can you talk about some of the big barriers for workers and job seekers seeking opportunity?

- Absolutely. I think, when we think about the barriers, they often exist at different levels of kind of influence. They exist within the organization in and of itself. But I think before starting there, it's important to acknowledge how, in terms of disability is positioned, or represented, or the policies that exist within any country, that that too shapes not just its impact, but also the way in which disabled people enter into the workforce. So what we know, for example in the US, is that, regarding the access to healthcare and the need for many to have access to private healthcare, that that can change the dynamic of their ability to engage in the workforce or their access to social security. But what we know on the flip side then is, for example, if you were disabled and in the UK, you have access to a UK government grant called Access to Work, which may provide for a personal assistant, which may provide for an interpreter, or a chair, or a blind. Whatever your access accommodation might need, it is outside of the employer's responsibility and funded separately, which means it may be more kind of inevitable than possible. But in terms of the work and the access for disabled people for employment, I think it can be very granular, and then it can be very institutional within the organization. What we know in terms of our work at Tilting the Lens has been even starting from something such as a job description, that there are ways in which so many disabled people opt out. Because, for example, on a job description, there may be language or a requirement that somebody be a strong communicator. But the lack of specificity there means that many people decide that that's not a role for them because the organization hasn't shared if that person needs to be an oral communicator, written, sign, in English. And that lack of clarity around the expectation means that people are just not set up for success, and I think, so often, those requirements are just habitual. The role may not actually require somebody to be a strong communicator in all definitions of communication, but it's just habit. And we don't think to change it because it isn't a barrier to access for us. Or if we think about those who may be in caregiving roles, those who are caregiving for parents or for children, or those who have a chronic illness or are long-term sick, for example, their CV might provide and might have a significant gap. And so often we don't ask the question, we don't pick up the phone or send an email and say, "Hey, can we chat through this?" And that often means that that person is put to the side and isn't advanced forward, even though they have value and skills that I think would be instrumental to an organization. Or if we even think about in terms of what a role might look like. It is so rare for us to see within a job description or within that first communication with an organization that they put forward and say, "Do you have any accommodations that you might need to participate in this process?" Often that only comes about when the individual is coming to interview or, even further, has been assigned the role. And they're only asked about their accessibility accommodations within that one moment and never again, not understanding that actually within that 1.3 billion- Within that 1.3 billion of disabled people, that actually 70% of those disabled people acquire a disability within their lifetime. So they're not born with it. And I think it's also about thinking about, within an organization, as we look post pandemic and return to the workforce, that for many, returning to an office is actually inaccessible to them, that in terms of being able to work from home, their home environment may be more accessible. But as we look to the workplace, how can we continuously make sure that those environments are accessible? But I think one of the challenges that we have, and you pointed this out, in terms of over 90% of people with non-apparent disabilities not self-identifying within the organization.

- I want to talk a bit about the fact that you've always had this passion for design and fashion. And in 2020, you founded Tilting the Lens, which is, as we said, a consultancy that creates accessible and equitable solutions. Can you talk about how you came to recognizing this is what I need to do, this needs to be done by me? What was your inspiration?

- I had been very fortunate that I had got to experience some of the most celebrated and known moments within the fashion system. In 2019, I got to be on the cover of the September issue of British Vogue, alongside Jacinda Ardern and Jane Fonda. What a trio. And I also got to go to the Met Gala in 2019, which in and of itself is... It happens the first Monday of May. It is a fundraiser for the costume Institute at the Met, but it is this social and cultural moment that many in the world, if not most of the world, are aware of. But the publicity moment happens on a flight of stairs, which in and of itself is a symbol of inaccessibility. And I have been very fortunate to be part of these movements and to be working within the luxury fashion system, and then the pandemic happened. And those statistics that I spoke of lived with me. And I sat there in September 2020 and made myself ask the question of, did the fashion system become more accessible because I was part of it? Or did it become more accessible for me? And I can open the doors of my wardrobes, and there are some beautiful custom, incredible pieces by some of the best designers in the world, But they are the exception and not the rule. They are not commercially available. There is not disabled people as creative directors within those brands. The infrastructure and the systems haven't changed. The representation and visibility is important. It's not enough to be systemic. And what do you need for systemic change? And I really believe you have to move from the individual to the collective. So I set up Tilting the Lens with this idea of creating an all-disabled team, being a disability-owned business and deliberately being a business. We are not a not-for-profit. And the rationale behind that was because, for too long, disability and charity have been synonyms of each other. And as much as this podcast is called "Here to help," often the notion around disability is helping disabled people. I don't want to help disabled people. I want to give them the tools and change the systems so that they can be set up for success and have agency and autonomy. And also that notion around kind of capitalism and investment, that if we are not a 501 3 or a charity, if we are a limited company in a business, the financial investment that an organization makes in us is also a investment of time. It's also an investment of significance because they have to do the work. They're not getting a charitable or a tax deductible discount in order for investing in this. They are doing this hopefully because there is intention and meaning behind the strategic change that they want for their organization. So we kind of see ourselves as a catalyst or an engine that comes into an organization and either does an audit or support a specific project or creates a strategic plan from top down, bottom up, and sideways to support an organization to think about accessibility holistically, much like the ways in which we're thinking about sustainability, that sustainability doesn't just exist within plastic cups and plastic straws, but it is the way an organization functions. And I think accessibility has merit within a similar framework in thinking about whether it's recruitment, in thinking about finance, in thinking about product development, in thinking about technology, in thinking about just leadership and creative direction overall. So it has been an extraordinary opportunity to work with some of the largest and some of the smallest companies in the world in terms of what success has looked like. We have brought assistive technologies for those who are blind and low vision into Gucci stores across the Americas. So if you are blind and low vision, what happens is you log into this app called Aira, A-I-R-A. And when you go into the store, the app kind of comes alive, and you're connected directly to a real life person who has permission to see out of the back camera of your phone. And that individual can guide you through the store, it can give you visual descriptions of the various different products and items, and whether you need to go to the bathroom or would like a glass of water or would like to sit down for a moment. It supports you in the navigation. The client advisor, even of themselves, supports the transaction or the conversation around the product detail because that's their expertise But it ensures that somebody doesn't feel intimidated or anxious opening the door. Because I think, for all of us, if you've ever been into a luxury store, pushing open that door, if it's something you are physically able to do, is intimidating. It can feel like this is not for me, and the idea that we can use technology as a support for both employment and for customers to be able to enter into that domain is truly incredible. But like that, we've worked in quiet ways, supporting people with the recruitment journey from job description all the way through to retention and promotion, because setting somebody up for success has to move beyond the probationary period. But also then looking to, okay, great, employment and support employment is one thing, but actually what about education? Because if somebody doesn't have the necessary degree or the necessary qualifications, they'll never get to the job moment. So we're currently looking into funds, and bursaries, and creating support systems to be able to support people to come through education in a way in which even the campus needs to rethink its accessibility because these problems are systemic. And while we can start small and move through an iterative process, the importance is that we think of it collectively and what can we all do to step outside of ourselves and create that change.

- Before we get to our final question, and I really wish we could keep talking for a lot longer here, I did want to, because I think it ties into you talking about how you form this company and why it was so important to have the staff that you have. I heard you say that when trying to design for accessibility, there's two questions that you always want to ask. Is this accessible? And also, who is in the room? Can you talk about why that's so important and what that means to you?

- When you're in the midst of a project, whether it is a design sprint or whether it is just in that iterative stage, concept has been confirmed, Asking a question like, is this accessible at any stage, is an amazing tool because two things usually happen. The person either says, "Yes, it's fully accessible," which means, A, they have no idea what they're talking about 'cause there's no such thing as fully accessible, and immediately requires at least a conversation or 15 other follow-up conversations. Or the second thing that happens is their eyebrows go up about three inches on their forehead and the whiteness of their eyeball is immediately evident. And they go, "What?" And you repeat it, "Is this accessible?" And then you see sweat on their forehead and their temperature rising, and you realize that accessibility hasn't been part of the plan at all. And you don't ask those questions to shame anybody, but what they are is it's a useful tool to move from awareness to action. Because if somebody says, "Yes," the next question is, "Great, how?" Is this in terms of digital accessibility? Is this physical accessibility? Is this in terms of the research process? Have we had a co-design model? Is there disabled people in the room? Who is it accessible for? In what way is it A, AA, AAA? And I think it's about ensuring that it's built into the process. And I think it's also about discovering that accessibility means different things to different people, and it is about moving us again away from this notion of compliance. So even if we look to accessibility and compliance, there's new legislation coming down the tracks here in the EU. It's the EU Accessibility Act, which is specifically around digital accessibility, initially, for those that are publicly-funded organizations and will then come to the private sector. But each EU member state is taking that legislation differently. For example, in Italy, it's asking all private companies on their website to narrate how accessible their digital technologies are based on say the WCAG 2.2 or other frameworks. But even as we think about the notion of compliance, compliance should have always been the floor, not the ceiling. It is a starting point, it is a minimum. And even if we think about compliance around recruitment and minimum numbers... In France, we have that 6% of organizations should have a representation of disability that, say, French global organizations, 6% of that team should be disabled. In Italy, it's 8%. But what we know even from the most recent census in Ireland is that it's 22%. The Irish public sector will soon move to an increase from three to 6% of disabled people, but it's not representative of society, and we can't think that the job is done when we get to six or eight. There's so many more people to include. So I think, is this accessible is an interesting question to think about moving to action and to really give us, I think, greater understanding as to how our teams are thinking about the prioritization of accessibility. In terms of who is in the room, who is in the room is an interesting question, particularly when we know that disability can be apparent and non-apparent, And we may not always know who is in the room. We may not always have the right to know who is in the room because people should have a choice in terms of how they self-identify and if they choose not to self-identify. But even knowing whether or not there are disabled people in the room informs the product, informs the service, informs the level of innovation. Whether it is an advertising campaign, whether it is a piece of technology, I think there is a deep understanding of whether or not there's disabled people in the room. I'll give you a classic example. At Cannes earlier this year, an advertisement won at Cannes Lion, which is the kind of most prestigious word in advertising. around the renaming of Charles de Gaulle Airport on December 3rd, which is the UN Day for People with Disabilities for his daughter Anne de Gaulle who was disabled. The advertisement opens with talking about the wonderful historic legacy of Charles de Gaulle. Everybody knows who Charles de Gaulle is, and then it gets quiet, and then the sad violins come in, but nobody knows about Anne de Gaulle. Now I imagine her father knew who she was, but for the story to... And that's what I mean by who is in the room. It's so evident so often that when disability-focused initiatives take place, that there is a real exclusion of disabled people. But asking who is in the room is not enough because it doesn't illustrate or define how we get disabled people into the room. So whether that's on a board, whether that's for a specific project, whether that's thinking about access to education, et cetera. So I think who is in the room is almost a catalyst question that then needs us to investigate the why. So, potentially, there's nobody disabled in the room. How did that come to be? Why? what can we do to change it? What is the infrastructure and the resources that are needed in order to do better?

- Well, unfortunately, we are at time for the last question, and so I'm going to ask you what I always ask at the end here, which is, despite everything going on in the world today, and all that has gone on, and all the challenges, and suffering, what is it that gives you hope for the future?

- I think what gives me hope is just people being able to move outside of themselves as individuals and come immediately to the collective. So whether it is the war in Israel and Palestine, whether it is the earthquakes in Afghanistan, whether it's the continued war in Ukraine with Russia, whether it's thinking about apartheids that are happening, or just the anxieties of day-to-day life, the grief and the loss that we each deal with in small or large ways. For me, I think what gives me hope is the ability for us to be vulnerable and trust and come together with one another. To give you an example, I think most recently in Ireland's history, what gives me hope is the sense of community. Historically, we have been a very Catholic and very religious-focused country. We have had two referendums in recent memory. One on marriage equality for queer and LGBTQ people, and one on reproductive rights and repealing the Eighth Amendment. Both pieces of legislation that I don't think could have been imagined a decade ago, definitely not two decades ago, And change happened because of individual conversations that happened around a dining room table of people who you would assume from different generations would be against, or would be homophobic, or would believe that women need to carry their babies to full term, should it be women who are pregnant. And it was individual conversations where people said, this is about me getting married, this is about my rights, this is about me choosing who I love, and not choosing to be gay, but this being who I am, or the idea that a person wants agency over their own body. And that resulted in landmark change in a country that I think many people decided who it was and what it was. And I think that isn't exceptional to Ireland, but I think whether we are talking about conflict and funding of wars, or if we're thinking about climate justice, or if we're thinking about racial justice, for example, that there is power in conversation and there is change in conversation. It probably just needs to happen a little bit faster.

- That is a beautiful way to end what has been an amazing conversation. Sinéad Burke, thank you so much for joining us today and thank you for everything that you do for the world.

- Thank you so much, Chris.