DUBLIN, Ireland — There are two things that immediately stand out about Sinéad Burke.
One is her height. The other is her hair. Between the two, you’ve got her story in a nutshell.
Burke is a little person, three feet, five and a half inches tall. There’s one little person born every 15,000 births. Burke can tell you the exact gene that switched off her growth receptors. She’ll also tell you that, when you combine physical and mental impairments, there are 1.2 billion disabled people in the world. And, over the past 12 months, she has become a highly visible advocate for them. It started last June with her TED Talk, “Why design should include everyone.” In December, an appearance at BoF’s VOICES launched her on a trajectory that culminated with four speaking sessions at the World Economic Forum in Davos. Along the way, she’s had one-on-ones with everyone from Christine Lagarde to RuPaul, Joe Biden to Oprah Winfrey. No wonder she describes the year as “seismic.”
Then there’s the hair. It’s a precise bob. When she was young, she was mad for the Spice Girls. Posh was her favourite. Her first holy communion, she was allowed to buy herself something with her pocket money, but family rules dictated she also had to get a gift for her four siblings. Everyone got the special VHS edition of Spice World with Posh on the box. Two decades later, destiny manifested when Burke had her long hair cut à la Victoria Beckham.
She’s always been like that about fashion. For her birthday, she’d ask for the September editions of American and British Vogue. The doorstop US version was too heavy for her to heft and read. She’d stand on it and exult, “Oh, look, I’m tall.” She was obsessed, you might say, with every aspect of fashion, to the point where a recent profile in The Daily Telegraph suggested she’d make an ideal editor, or maybe even chief executive. So, it’s inevitable that Burke’s advocacy for the disabled is focused on the fashion industry. “No one is looking at this market in isolation,” she says. “And it’s not like it’s a new customer. But their voices haven’t been amplified. They’ve not been invited to the table to help make and share decisions.”
But Burke’s advocacy is about so much more than a seat at the table. A 2013 report on The Global Economics of Disability calculated that the 1.2 billion disabled people in the world have a combined annual disposable income of $1 trillion. Then, factor in their 2.3 billion friends and family members, who control another $6.9 trillion. Those numbers won’t have gone anywhere in five years. But if all those voices have not been, as Burke says, “amplified,” that can only be because they’re a “cacophony,” a favourite word of hers. That will be her role as an influencer, then: to distil the noise into a clear message for the fashion industry. And one distinct asset she has on her side is that she speaks their language.
Still, as much as she is a True Believer, a proselytiser for fashion’s dream, she doesn’t really nurse any illusions, which breeds the kind of pragmatism that makes her see solutions where there are problems. “One of the challenges of fashion is that it is notoriously hierarchical, and it profits from exclusivity. In order for the disabled market to be relevant customers and to have their voices validated, there has to be power sharing. There are very few people within the fashion industry in positions of power who have lived experience or an empathy within this arena. If they design for difference without a tangible understanding, the product becomes patronising. Or it comes about that we think only in terms of function.”
Consider the footstool. Burke’s legs dangle in the average chair, so after 15 minutes, she gets pins and needles and she’s more comfortable standing. The solution is a footstool she can carry with her, but it’s clearly preferable if it’s something she wants to carry. It doesn’t exist (unless pink plastic is something you’re partial to). “Why should my experience and product and money be lessened purely by something I don’t have control of?” Burke wonders. “And why isn’t anyone looking at it as a creative opportunity?” Fast forward: she’s mentoring a student at Ireland’s National College of Art and Design who has designed a backpack which converts to a footstool when it’s laid on its side. “The key conversation in the design process was about form, because the only thing she was considering was function,” Burke adds.
In order for the disabled market to be relevant customers and to have their voices validated, there has to be power sharing.
“Organised, articulate and creative by nature,” is how she defines herself. “Primarily because I’ve had to be, from the earliest of ages. I had to develop a vocabulary I could use, the boldness to go up to strangers, to ask for help when I couldn’t access something. So I have no qualms about saying this is what the industry needs to do to change. And I’m not talking about transformative change across different sectors. The skills are already in-house. It’s about a change of mind, a change of presence. Visibility is so important.” Burke claims that’s one distinct advantage of her own disability. “People’s assumptions come to the forefront when they meet me. They deal instantly or they don’t. With something that’s not obvious, like dyslexia or autism, there’s always that question — how long do I wait before I tell you?”
“But it’s actually less about confining it to one disability,” Burke continues, “and taking a step back and looking at the skills required in all those categories. For people in wheelchairs, for instance, it’s about the length of sleeves, which can catch on wheels. You adjust through tailoring, which is what little people require too.” She confesses that she herself is particularly “beguiled” (her own delicious word) by the dress, but historical fixtures like zips are her enemy. They limit independence. Recently, she was at a country wedding where, with no one to call on for assistance at the end of the evening, she had to sleep in her dress. All she’s asking for is a creative solution that offers “beauty, but also autonomy.” The disabled market is not just a creative and financial opportunity, it’s also an educational one.
It’s already part of Burke’s lore that she has a complete Burberry wardrobe. After her TED Talk, she was approached by Alice Delahunt, then global director of digital marketing for Burberry. Appointments were arranged in the brand’s Regent Street flagship. It wasn’t a capsule collection created specially for her. Burke selected clothes off the rack, and they were re-tailored for her. Valuable lesson: “It doesn’t have to be a chief executive or a creative director. All it takes is an individual advocate who can use their platform within the company.”
Anyone who’s encountered Sinéad in her Burberry finery (the trench is a particular point of pride) can tell what a revelation the experience was for her. Empathy and respect from such a global brand for someone whom convention would steer to the children’s department, where, says Burke, the boys’ clothes would be quite chic — striped boatnecks, chinos, good shoes — and the girls’ would be all sparkly princess sequins and butterflies. “Young girls are already infantilised,” she sighs. “My money is the same as yours, why am I limited to shopping for items that don’t fit properly and don’t help me command respect and own a space?”
Inevitably, Burke has been offered funding by key fashion investors to design a line for little people. “I’m not a designer,” she says dismissively. “And that also abdicates responsibility from the fashion industry to accommodate this market.” As she astutely points out on behalf of fashion aficionados everywhere, “buying into the luxury market is not just about craftsmanship, it’s also the currency associated with the label or brand.”
But she is actually markedly non-accusatory about industry inadequacies. All she wants is an opportunity to make her case for inclusion. It’s convincing. The financials say so. Design for the disabled accesses a wider community. “We’re no longer in an era when we can enforce a distance between the corporation and the customer,” she agrees. “Social media has bridged that gap by uniting a whole new customer base in the conversation. It no longer makes financial sense just to accommodate the bell curve of society, because people invest in people. Which means they’re more and more willing to invest in a brand with a human story.”
Her own is as good a place to start as any. Unsurprisingly, its strongest thread is family. There are seven of them. The other little person is Sinéad’s dad, Chris. Birmingham-born, he was acting in a show at Dublin’s fabled Olympia Theatre when he fell for Kath, a waitress in the restaurant next door. She followed him back to England, they married, returned to her hometown, had five kids. Sinéad is the eldest, at 27. In descending order, Natasha is an actuary, Niamh and Chris are optometrists and Chloe, the youngest at 20, is studying to be one. They are all of average size. That is the term Burke uses by way of contrast to her own stature. She points out that 80 per cent of little people are born to average-sized parents.
It was through addressing Sinéad’s radically under-serviced needs — school uniforms, for example — that her parents came to found the Irish Association for Restricted Growth in 1997, though that mouthful was soon changed by consensus to the Little People of Ireland. When she was 11 and considering having what sounds like some extremely Gothic surgery to lengthen her legs, her mother and father left the decision with her. “I realised the reason I was doing it was to assimilate and make other people more comfortable with my disability, and an extra three inches wouldn’t make that much difference — so I decided that, if people didn’t like me because I was a little person, that was their problem, not mine.”
It no longer makes financial sense just to accommodate the bell curve of society, because people invest in people.
She was 11, remember. Which underlines the glaringly obvious: she wouldn’t be who she is if she hadn’t been who she was. Burke tells the story of a recent encounter with a classroom of young kids. One asked, “Do you believe in unicorns?” She answered yes. Another wondered if she had a magic wand, would she be tall? She answered no. “That would mean there’d be no way I’m the person I am today, because the person I am is not despite my disability, it’s alongside it.” Her articulacy, her curiosity, were hers from the beginning. She learned to assert herself in creative ways. Her doctors’ appointments were at the children’s hospital in Dublin, so she’d make sure she was reading something adult, just so the staff knew she wasn’t a child. (She swears she just held The Da Vinci Code, she didn’t actually read it.)
The Burke family now lives an hour outside Dublin in Navan, in a four-bedroom bungalow which, she says, hasn’t been physically adapted for her father and her, bar low light switches and taps at the front of sinks rather than the back. Sinéad takes the bus into the city every day because she’s a couple of years into a PhD at Trinity College. Her specialty is children’s rights as they pertain to education at the primary school level, where there is less research than at higher levels. Her aim is a new teaching model and methodology. It stems from her own experience teaching at the primary level, how her physicality brought about a change in the classroom. “For me, it was always about listening to the children, and the learning and participation that could occur when they were taken seriously.”
“I’m very fortunate that education was something I revelled in,” Burke says. “Those who create the curriculum aren’t cognisant of all the different people in the classroom. I was teaching disadvantaged 11-year-old boys in a poorer area, some academically able, some challenged, and I was coming from a perspective where my voice was already so different, I had to adapt the curriculum for them and myself.” It will always come back to empathy and respect in her story. Valuing what her pupils valued… this was Burke’s access. For instance, she used local takeaway menus to teach them maths. One order costs this, so two orders cost how much? “I didn’t do maths, I did dinner.”
And when she had a girls’ class, Burke used her own passion as a foundation: the geography of fashion, the history of fashion, art through fashion illustration, oral English taught through interviewing local fashion people.
Her life has been an education in the power of language, as a force for good and something less so. Words shape perceptions. Once, she was called on in an oral exam to describe herself in native Irish, but “dwarf” was the only term she had recourse to in Gaelic. “I was frustrated by a language that didn’t represent me,” Burke says. So she agitated for a change. As of three years ago, the Gaelic lexicon now includes a literal translation of “little person.”
She has no time for the sensationalist triumph-over-adversity scenario that is the easy option for the media when they approach her. “But as people can be patronising, overly sympathetic and frustrating, they can also be terribly cruel and unkind when you are othered,” Burke says. You immediately appreciate the emotional intelligence she has had to develop over the years, the ability to assess a situation. She has liaised with Dublin’s police force on amending procedures regarding street harassment and hate crimes. And — less ominous, maybe, but irritating nonetheless — she’s canny about the uses of social media in her own life so she’s quite aware when someone is positioning her in a photo when she’s out and about in Dublin.
Burke says when she was young, she referred to herself as “just Sinéad.” She never used the vocabulary of disability. Then, she began to emphasise her personhood, “a person of disability.” But she realised that was minimising the disability. Now, she calls herself “a disabled person.” She says, “I am proud to be part of the disabled community. I’ve learned from advocates, like Rebecca Cokley in the US, who are increasingly amplifying the vocabulary of disability. There’s a real power in claiming the lexicon.” In other words, no more infantilising notions like “special needs.”
“Where have you seen someone who looks like me before?” she’ll ask an audience. Inevitably, she finds they’re often familiar with little people through the toxic reach of reality TV and its “Little Women” franchise, which features the same degree of brawlin’, boozin’ bad behaviour that has made “Real Housewives” such a guilty pleasure for a depressingly huge audience. “Is it my job to critique something that creates an opportunity to engage a huge number of people?” Burke wonders. But is such a moment leverageable for little people at large? “Not every little person is me,” she says carefully. “There are all sorts of people in the little people community, and seeing people in different ways is important. My biggest wish is that they leave the programme with a bigger platform than they had to begin with.” In other words, that Terra and Tonya and Elena and the others might feel the same responsibility she does, to prove herself so the little people behind her don’t have to.
I used to think influencer culture would be a new vehicle for minority voices to be heard. But this is just the beginning.
The night before I met Burke in Dublin, she went to an evening with Angela Davis, a true activist legend. For last year’s International Women’s Day, Burke designed a scarf in collaboration with London design studio Electronic Sheep which featured quotes by women she admired, Davis among them. To get the chance to share opinions with yet another icon seemed pretty much of a piece with the year Burke has had. “She told me it wasn’t her place to dictate the struggle of a younger generation or how they narrate it. She insisted her role was to support them, and only hope they didn’t make the same mistakes. She didn’t elaborate on what those might be.” But Davis at least vindicated Burke’s belief in collaboration. With a cacophony of voices, sustainable change is only possible with power sharing.
Which brings us back to fashion: Burke’s faith in the transformative dream tempered by clear-eyed practicality, the means to an end. “With advocacy in fashion, there always needs to be the question, who is profiting?” she muses. “Is the payoff giving visibility? In our quest for inclusion, who are we exploiting? Fashion’s a minefield, I love percolating on these issues, I don’t think there’s any one answer or one correct conclusion. Policy is less about legislation, more about getting the consciousness into the DNA of the brand: who are we accommodating? Who are we representing? How many non-white or disabled people do we have as brand ambassadors?”
Burke allows herself a reflective moment. “I used to think influencer culture would be a new vehicle for minority voices to be heard. But this is just the beginning.” Her ideal right now, after everything that has happened in the past year, would be a sit-down with LVMH and Kering in the same room. “Lots of different questions need to be asked of the fashion industry,” she insists. “Movements often have individuals at the helm but they need to be supported by allies. For true success, there has to be a community, supported by people in power who can further causes that they aren’t perhaps affected by.”
But, of course, the fiercely ambitious activist still harbours the ardent fashion fan. Since she was 15 years old, Burke has kept a notebook of things she wanted to achieve. Most of the things from the past 12 months were not on that list. So what’s on it now? “A visit to Coco Chanel’s apartment, an invitation to the Met Gala… and I’d love to sit down with Anna Wintour. She’s been the editor-in-chief of US Vogue for my entire existence.”
Sinéad Burke contemplates my raised eyebrows and adds, “I want to hear what makes people in the industry tick, besides profit and power.”
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