Why design should include everyone - Sinéad Burke

“I often forget that I'm a little person. It's the physical environment and society that remind me.” Sinéad Burke, WEF  | Photo Credit: World Economic Forum / CC BY-NC-SA 2.0

Sinéad Burke is acutely aware of details that are practically invisible to many of us. At 105 centimeters (or 3' 5") tall, the designed world -- from the height of a lock to the range of available shoe sizes -- often inhibits her ability to do things for herself. Here she tells us what it's like to navigate the world as a little person and asks: "Who are we not designing for?"

I want to give you a new perspective. That sounds grandiose, and it is. I left Ireland yesterday morning. I traveled from Dublin to New York independently. But the design of an airport, plane and terminal offers little independence when you're 105 and a half centimetres tall. For Americans, that's 3' 5". I was whisked through the airport by airline assistants in a wheelchair. Now, I don't need to use a wheelchair, but the design of the airport and its lack of accessibility means that it's my only way to get through. With my carry-on bag between my feet, I was wheeled through security, preclearance and I arrived at my boarding gate.

I use the accessibility services in the airport because most of the terminal is just not designed with me in mind. Take security, for example. I'm not strong enough to lift my carry-on bag from the ground to the carousel. I stand at eye level with it. And those who work in that space for safety purposes cannot help me and cannot do it for me. Design inhibits my autonomy and my independence. But traveling at this size, it isn't all bad. The leg room in economy is like business class.

I often forget that I'm a little person. It's the physical environment and society that remind me. Using a public bathroom is an excruciating experience. I walk into the cubicle but I can't reach the lock on the door. I'm creative and resilient. I look around and see if there's a bin that I can turn upside down. Is it safe? Not really. Is it hygienic and sanitary? Definitely not. But the alternative is much worse. If that doesn't work, I use my phone. It gives me an additional four- to six-inch reach, and I try to jam the lock closed with my iPhone. Now, I imagine that's not what Jony Ive had in mind when he designed the iPhone, but it works.

The alternative is that I approach a stranger. I apologize profusely and I ask them to stand guard outside my cubicle door. They do and I emerge grateful but absolutely mortified, and hope that they didn't notice that I left the bathroom without washing my hands. I carry hand sanitizer with me every single day because the sink, soap dispenser, hand dryer and mirror are all out of my reach.

Now, the accessible bathroom is somewhat of an option. In this space, I can reach the lock on the door, the sink, the soap dispenser, the hand dryer and the mirror. Yet, I cannot use the toilet. It is deliberately designed higher so that wheelchair users can transfer across with ease. This is a wonderful and necessary innovation, but in the design world, when we describe a new project or idea as accessible, what does that mean? Who is it accessible to? And whose needs are not being accommodated for?

Now, the bathroom is an example of where design impinges upon my dignity, but the physical environment impacts upon me in much more casual ways too, something as simple as ordering a cup of coffee. Now, I'll admit it. I drink far too much coffee. My order is a skinny vanilla latte, but I'm trying to wean myself off the syrup.

But the coffee shop, it's not designed well, at least not for me. Queuing, I'm standing beside the pastry cabinet and the barista calls for the next order. "Next, please!" they shout. They can't see me. The person next to me in the queue points to my existence, and everyone is embarrassed. I order as quick as I can, and I move along to collect my coffee. Now, think just for a second. Where do they put it? Up high and without a lid. Reaching up to collect a coffee that I have paid for is an incredibly dangerous experience.

But design also impinges on the clothes that I want to wear. I want garments that reflect my personality. It's difficult to find in the childrenswear department. And often, womenswear requires far too many alterations. I want shoes that affect my maturity, professionalism and sophistication. Instead, I'm offered sneakers with Velcro straps and light-up shoes. Now, I'm not totally opposed to light-up shoes.

But design also impacts on such simple things, like sitting on a chair. I cannot go from a standing to a seating position with grace. Due to the standards of design heights of chairs, I have to crawl on my hands and knees just to get on top of it, whilst also being conscious that it might tip over at any stage.

But whilst design impacts on me, whether it's a chair, a bathroom, a coffee shop, or clothes, I rely on and benefit from the kindness of strangers. But not everybody is so nice. I'm reminded that I'm a little person when a stranger points, stares, laughs, calls me a name, or takes a photograph of me. This happens almost every day. With the rise of social media, it has given me an opportunity and a platform to have a voice as a blogger and as an activist, but it has also made me nervous that I might become a meme or a viral sensation, all without my consent.

So let's take a moment right now to make something very clear. The word "midget" is a slur. It evolved from PT Barnum's era of circuses and freak shows. Society has evolved. So should our vocabulary. Language is a powerful tool. It does not just name our society. It shapes it.

I am incredibly proud to be a little person, to have inherited the condition of achondroplasia. But I am most proud to be Sinead.

Achondroplasia is the most common form of dwarfism. Achondroplasia translates as "without cartilage formation." I have short limbs and achondroplastic facial features, my forehead and my nose. My arms do not straighten fully, but I can lick my elbow. I'm not showing you that one.

Achondroplasia occurs in approximately one in every 20,000 births. 80 percent of little people are born to two average-height parents. That means that anybody in this room could have a child with achondroplasia. Yet, I inherited my condition from my dad. I'd like to show you a photo of my family. My mother is average height, my father is a little person and I am the eldest of five children. I have three sisters and one brother.

They are all average height. I am incredibly fortunate to have been born into a family that cultivated my curiosity and my tenacity, that protected me from the unkindness and ignorance of strangers and that armed me with the resilience, creativity and confidence that I needed to survive and manipulate the physical environment and society. If I was to pinpoint any reason why I am successful, it is because I was and I am a loved child, now, a loved child with a lot of sass and sarcasm, but a loved child nonetheless.

In giving you an insight into who I am today I wanted to offer you a new perspective. I wanted to challenge the idea that design is but a tool to create function and beauty. Design greatly impacts upon people's lives, all lives. Design is a way in which we can feel included in the world, but it is also a way in which we can uphold a person's dignity and their human rights. Design can also inflict vulnerability on a group whose needs aren't considered.

So today, I want your perceptions challenged.

Who are we not designing for? 

How can we amplify their voices and their experiences? 

What is the next step? 

Design is an enormous privilege, but it is a bigger responsibility. I want you to open your eyes.

Thank you so much.

"Who is it accessible to? And whose needs are not being accommodated for?"

Kat Holmes, previously, the Inclusive Design Director for Microsoft, spoke with me about challenging the language of accessibility and truly understanding the economic, creative and cognitive value of rooting your business in diversity. Kat will release her book with MIT Press in 2018.

"Due to the standards of design heights of chairs, I have to crawl on my hands and knees just to get on top of it, whilst also being conscious that it might tip over at any stage."

Rob Van Varick of Michael Graves Design was a huge help in shaping this talk. We had lengthy discussions about the definition of accessibility, design standards and the perceived aesthetics of accessibility. We assume that by making a product, building or organization accessible, we are limiting it's beauty or physical appeal. This is not true. Accessible solutions can and should be beautiful.

"But whilst design impacts on me whether it's a chair, a bathroom, a coffee shop, or clothes, I rely on and benefit from the kindness of strangers. But not everybody is so nice."

Stella Young's excellent TED talk, "I'm not your inspiration, thank you very much" changed how I viewed the world and myself. At times, I need the assistance and support of others but I wanted this talk to cultivate empathy, not sympathy. Artist Joe Caslin was my empathetic counsel for this talk. He taught me that 'empathy is the noticing and therefore valuing the preciousness of a life'. Joe's most recent work can be viewed here.

"The word 'midget' is a slur."

"The M Word" — Little People of America.

"If I was to pinpoint any reason why I am successful, it is because I was and I am a loved child."

In 1998, my parents founded Little People of Ireland, an organization that offers educational and social support for little people and their families. They created a community and a safe space for little people and their families to flourish, to ask challenging questions, to share advice and experience and to receive medical knowledge and up-to-date expertise. My parents have not just transformed my life but those of a whole community.

Sinéad Burke, a passionate advocate for education and inclusivity, has been committed to empowering the most vulnerable since her early days in elementary school. After graduating at the top of her class with the prestigious Vere Foster Medal from the Marino Institute of Education, she aspired to become a teacher who would create a safe and representative environment for children.

Through her writing, public speaking, and social media work, Burke sheds light on the lack of inclusivity in the fashion industry. She fervently encourages designers to consider and collaborate with disabled individuals, pushing for a more inclusive approach. Additionally, she critiques the media's portrayal of women, offering an alternative dialogue that celebrates achievements through her "Extraordinary Women" interview series.

Sinéad Burke is an educator, author, and founder of the accessibility consultancy Tilting the Lens in 2020. Since its inception, she has been at the forefront, leading her team on numerous fulfilling projects and partnerships. As a strong proponent of accessibility and equity, Sinéad dedicates much of her time to educating and advocating for a more inclusive world.

Burke's efforts extend beyond the fashion industry. She has engaged in meaningful conversations about education, disability, fashion, and accessibility in various settings, including schools, workplaces, government agencies, and even the White House. Her advocacy aims to include all members of society and calls on officials to create legislation that benefits the most marginalized communities.

Currently pursuing a PhD at Trinity College, Dublin, Burke's research focuses on human rights education and giving children a voice in schools. Her core values include kindness, empathy, and volunteerism, and she actively supports organizations such as the Irish Society for the Prevention of Cruelty to Children and the Irish Girl Guides. As the podcast host "As Me with Sinéad," she continues to amplify voices and inspire positive change.

In addition to her work as an advocate, Sinéad takes on a pivotal role in the strategic development of Tilting the Lens. She fosters a company culture that thrives on collaboration and compassion, ensuring the organization remains true to its core values.

Through her dedication to education, advocacy, and strategic leadership, Sinéad Burke is truly shaping a more accessible and empathetic world for all.