Inspired by her daughter and driven by purpose, Sharon Smith’s journey to the Down’s Syndrome Association is anything but conventional.
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How did you land your current role, and what was your career path leading up to it?

It’s hard to describe my journey as a traditional career path, as it has been more of a series of nomadic meanderings. Over the past 20 years, after my daughter was born and diagnosed with Down’s syndrome, I have worked in several part-time, self-employed roles, while also dedicating time to voluntary work and studying for a PhD. The idea of returning to full-time employment after such a long period out of full-time employment was daunting. However, when the opportunity arose to bring together these many threads together into a Policy & Communications role at the Down’s Syndrome Association, it felt like a natural next step, and it is a bonus to work with a charity that has provided us with incredible support since my daughter was born.

What is the most interesting part of your job?

The Down’s Syndrome Association works with a group of self-advocates who have Down’s syndrome called Our Voice. The most interesting part of my role is meeting up with members of the group, hearing their views on a range of topics, and working out how I can bring together their authentic voices in charity communications and policy briefings in a way that remains authentic and that reflects their lived experiences. A highlight of my year was Christmas Karaoke!

What would be your alternative career?

I would love to own an ice-cream parlour by the sea, the type you read about in chick lit novels, with a weathered wooden counter, handwritten chalkboard menus, and the scent of salt and sugar in the air. Despite growing up in the Midlands, the sea is where I feel most at home: its rhythm, its vastness, its power and presence. Maybe one for retirement...

What inspired you to work in the charity sector?

My daughter, who has Down’s syndrome. Prior to having children, I had worked in financial services, retail and internet marketing, often for faceless shareholders whose priority was profit. Following the birth of my daughter, I wanted to find roles, whether voluntary or paid, where I could feel that I was making a difference. Navigating systems as a parent carer has shown me both the barriers that families continue to face, and I wanted to be part of building something better.

What challenges do you face in your day-to-day work?

Balancing authenticity with impact is vital, especially in communications and policy work related to people who have Down’s syndrome or other learning disabilities. Powerful stereotypes abound, meaning that there’s a real risk of slipping into tokenism or sentimentality if communications are not carefully constructed in a way that is respectful, representative, and rooted in real experience. I need to make space for complexity and differing perspectives, resisting the urge to simplify what is nuanced and deeply human. This is not always easy to achieve.

What would make the biggest positive difference to the sector right now?

The biggest shift would come from organisations working better together with shared purpose and humility. Disabled people and their families are currently facing complex challenges, and no single organisation holds all the answers. We need joined-up thinking, rooted in lived experience, where those receiving support and those delivering it shape solutions together. When organisations collaborate, sharing insight and resources, we can achieve so much more together.

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