On the latest episode of Insights presented by Sean O'Rourke, Sean invites Sinéad Burke, a teacher, writer, entrepreneur and an advocate for disability and design, to share an open conversation about fighting for change, being on the cover of Vogue (twice!) and using language deliberately. Listen back above.
When Burke was 13 years old, she was faced with a choice that would significantly alter her appearance and life going forward. Born with Achondroplasia - the most common form of Dwarfism - Burke describes her family as a "warm, nurturing" one, that prized education, community, justice and fairness above all else.
So when the opportunity to undergo limb lengthening came up for Burke, her parents left the decision up to her.
The surgery involves deliberately fracturing the limb bones, inserting pins in the bones and surrounding them with a cage-like structure. Every day Burke would need to "twist those pins so that the fracture increases so that new bone can grow".
"I think on a surface level I could see some of the advantages of being taller in terms of physical access", she explained. At 3ft 5 inches now, she was told at the time that the max height gain she'd get from the surgery was up to six inches - which would have "made some difference" to her.
She was told it would help make her "feel more included in society because I would be closer to being taller, I would be closer to being non-disabled".
"I remember at the time realising that, yes, it would be easier to reach light switches but the reality is, we can change those things quite easily and I didn't want to change me."
Raised by a non-disabled mother and a father with the same condition, Burke grew up with a sense of deep positivity around her disability, something that carried into her parents' decision to set up Ireland's first charity for Little People, then called the Irish Association for Restricted Growth and now known as Little People of Ireland.
Their aim was to bring families together to create social supports as well as sharing ideas and innovations around the condition. It was just as deliberate a decision to change the name of the organisation to match international bodies, and Burke's choice to use the term Little Person is a considered one.
"I think language is deeply personal. I also think that in terms of language it's always evolving, that idea that the organisation used to be called the Irish Association for Restricted Growth was relevant terminology at the time.
"There were undoubtedly friends of mine that wouldn't describe themselves as a Little Person, would maybe describe themselves more comfortably as having Dwarfism.
"It identifies my personhood, it immediately identifies my size, but like that interchangeably I would often say that I have Dwarfism because for those not connected to the community, defining myself as a little person doesn't give them as much of an insight as maybe saying I have Dwarfism."
She personally doesn't like using "euphemisms" like differently abled, special needs or different abilities because, "I think they defer us away from using the term disabled". It's up to communities, she adds, to ensure that offensive terminology is not used "as if they have no meaning".
"Language always has meaning".
In the years since, Burke has become an internationally recognised and sought after advocate for disability and design, not to mention an impactful figure in the fashion world. She said she was drawn to fashion as a means of communicating who she was with a "new vocabulary".
"From a very early age I think I was very much aware that when people looked at me they made certain assumptions over who I was and specifically what I could do."
Through her blog Minnie Melange she interviewed key figures in the industry, and was invited by the Obama administration to present her work and meet other disabled advocates at its event, Design for All. In recent years, she's appeared on the cover for Vogue not once, but twice, stepping in as a consulting editor for the May 2023 issue, Reframing Fashion.
In 2019 she secured a coveted ticket to the Met Gala, where she walked the hallowed steps and struck a pose alongside A-listers like Kim Kardashian, Harry Styles and Lady Gaga.
"What I wanted to do was to have meaningful conversations with leaders to think about that systemic change but specifically also around art museums and galleries", she said, highlighting how these spaces are often inaccessible for people with disabilities.
Years later, in 2023, Burke saw the fruits of her labours in real time when the Met held a winter exhibition, Women Dressing Women, that featured two disabled mannequins, one of which represented Burke.
"Sometimes change takes far longer than you think", she said. But ever focused on the future she added that two mannequins isn't enough. "But it's a start."
Listen back to the full episode above or click here.
If you have been affected by issues raised in this story, please visit: www.rte.ie/helplines.
