Paul Stevenson

He Him
I am a lived experience Ambassador, Tourette Syndrome Advocate
Genius Within CIC

Award category:

Grassroots Community Advocate

I am Paul Stevenson, a 61-year-old married father of five, honoured to be both an award-winning photographer and an advocate for Tourette Syndrome (TS) awareness. Despite encountering late-onset Full Blown Tourette Syndrome alongside conditions like ADHD, OCD, and Sensory Processing Disorder, I strive to combat stigma associated with neurological disorders. My involvement in media projects such as the National Geographic Taboo series, BBC Employable Me, and the Swedish Kanal 5 documentary “Outsiders Tourettes” has allowed me to promote acceptance and understanding.

Supporting Evidence:

Beyond media appearances, I actively support individuals and families affected by TS, offering practical guidance and education. Projects like the acclaimed animation “For the Love of God, Just Refer Me” with Nottingham University illustrate my commitment to raising awareness, even during challenging periods such as lockdowns. Collaborating with Nottingham University on a Tourette Syndrome steering group and contributing to panels like the National Institute for Health and Care Excellence reinforce my dedication.

Actions to Address Stigma:

I advocate for TS awareness through speeches at conferences, webinars, and podcasts globally. Personally addressing offensive and inaccurate portrayals of TS online reflects my ongoing efforts to combat stigma. Initiatives like the opera “Your Story, Your Voice, Your Stage” showcase my goal of empowering those with TS to challenge stereotypes and share their experiences.

Tangible Outcomes:

My advocacy extends support to TS associations across the UK and Europe, including Tourettes Action, Tic & Hull Yorkshire, Tourettes Scotland, Tourette Italia, and TTAG (Tourettes and Tics globally). Participating in various research studies on tics and TS has contributed to significant strides in understanding and treating the condition. Initiatives like the animation “For the Love of God, Just Refer Me,” which reached over 500,000 views in its first week, underscore the impact of these efforts.

Ongoing Commitment:

I remain dedicated to raising TS awareness through continued engagement with patient communities, media appearances, and collaborations with advocacy organisations worldwide. As an ambassador for Genius Within, I promote neurodiversity awareness in workplaces, empowering individuals with TS to thrive.

“In order to see the essence of a person, let us not linger on what may hold us back, but concentrate on what drives us forward.”

Q&A

Paul Stevenson
I don’t really view myself as a role model, but as someone who is in a position to fight for inclusion and change, so that is what I do.
In summary, my work has fostered greater awareness, empathy, and support for the disabled community, not just those affected by Tourette Syndrome and associated neurological disorders. Through advocacy, media presence, personal engagement, and collaborative efforts, I continue to advocate for inclusivity, understanding, and empowerment on a global scale.
Overall, my future goals and aspirations in disability advocacy are likely to focus on expanding my impact, fostering acceptance and inclusion across diverse platforms and audiences, and continuing to be a leading voice for positive change within the TS community and beyond.
Being creative, by means of photography, and investing lots of time making forever memories with my wife Carol and our children.
What brings me joy is knowing that I can make a difference in someone’s life. It doesn’t always require a grand gesture; sometimes, a small act of kindness can make a world of change.
No real preference, I like both.
That every human being should treat each other with compassion and empathy.
Hope this isn’t too controversial, but I wish the powers that be should stop demonising the sick and disabled.
Paul Stevenson wearing a dark polo shirt, image of a newspaper article from the Times recommending my TV documentary Employable Me.

Areas of expertise

Accessibility, Art, photography, Charity, social enterprise, Community, Education, Employment, Health and wellbeing

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