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Sinéad Burke

A moment within a movement

_STYLE / Editor-at-large letter

Today is the International Day of Persons with Disabilities. That phrase might mean that you raise an eyebrow and question the language. Don’t worry, I do too. In recent years, to attach pride and to erase shame surrounding disability, identity-first language has grown in popularity. For example, I’m Sinéad and I describe myself as a disabled woman.

At JUNIPERunltd, we try to mirror the vocabulary preferred by disability advocates and activists. As you move through our content, you’ll often see us speak about, with and to disabled people. Though, of course, if our contributors prefer different words to describe themselves, you’ll see that language dotted in articles and interviews as well. Language is powerful; it doesn’t just name our society, but it shapes it too.

So, yes, today is the International Day of Persons with Disabilities. It is a day created by the United Nations to reflect on the current positioning of disability and to map the next steps for true and authentic inclusion. This year’s theme is ‘Not All Disabilities Are Visible’, reminding us of the importance of intersectionality and an acknowledgement that the breadth of the disability community is almost immeasurable - covering visible, invisible, sensory, chronic illness, disease, mental illness and more.

But, it’s been challenging to be disabled recently. More so than usual. It seems like it was both eons ago but also yesterday when Sia released the trailer for her film ‘Music’, wherein the autistic protagonist is played by Maddie Ziegler, a non-disabled dancer. It instigated debate - where disabled people had to articulate the validity of their existence and the importance of being granted space to tell our own stories. Those who were non-disabled questioned the capacity of autistic people to play such a role and whether or not it would have been unethical to include them. But, did they ask or assume?

Data proves that stories about disabled people are welcomed by Hollywood. They are loudly celebrated and often awarded, because it gives non-disabled actors a role in which they can transform themselves and take the audience on a journey. Our stories are important, but just not when we tell them.

The pandemic has also been particularly difficult for disabled people. Here, in Europe, where I live, many disabled people have been sheltering for months. Some of my friends have only left their homes once or twice since March. They’ve had to have difficult conversations with family and friends who don’t understand the gravity of the pandemic and the risk that it places many disabled people within. For some, it is life or death.

So yes, it’s the International Day of Persons with Disabilities, and it is a day to celebrate. Disabled people are extraordinary - not in an ‘inspiration porn’ kinda way - but because of their resilience, humour and hope that things will get better. I am so proud to be disabled and to be part of such an incredible community who challenge my internal ableism, who demand that I rest and mind myself, and who strive for a better, more accessible and equitable world.

Today, I’d like to ask you to make a commitment. To think about the opportunities that you have to have a positive impact on people and the planet. Start small: next time your friend uses the word ‘lame’ in a sentence, challenge them. Ask them if they mean silly or ridiculous. Do the same if they use the word dumb or stupid. Find new language that doesn’t minimise disabled people and their experiences. As you become more confident, think about how you can ensure that your business, no matter where you sit within the organisation, that it is accessible - both in its physical space and on your website. Hire disabled people and create scholarships, grants and paid internships that allow disabled people to go to college or apply for their dream job. Vote for the representatives that promise to create access and will deliver policies that provide independent living and disability justice.

The progress that we have achieved is measurable. The world has changed. Ten years ago, would the world be listening to a conversation about own voices and the importance of authentic representation in film? I’m not so sure and not enough people are listening now, but there are more voices and more conversations. For me, today, that’s worth celebrating.

How will you design your world?

Sinéad Burke
Editor at large

Sinéad Burke is a teacher, writer and advocate. Sinéad works towards accelerating systemic change within the domains of diversity, education, inclusion, design and disability. She consults within the fashion and design industries to ensure that spaces and products are accessible to all.

Sinéad is a TED speaker, her talk ‘Why Design Should Include Everyone’ has amassed over one million views and resulted in her achieving some ‘firsts’: Sinéad is responsible for the introduction of the term for little person, ‘duine beag’, into the Irish language, she was the first little person to attend the Met Gala, and is the first little person to feature on the cover of Vogue. Sinéad has addressed the Business of Fashion’s VOICES conference and the World Economic Forum too. Sinéad was presented with The Leadership Award at EcoAge’s Green Carpet Fashion Awards by Gucci CEO, Marco Bizzarri and by appointment of President Michael D. Higgins, Sinéad is a member of Ireland’s Council of State.


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