Museums + Heritage Awards winner releases memoir on disability advocacy

Sam Bowen, winner of the 2024 Museums + Heritage Awards Sector Impact Award, has published a memoir detailing her experience advocating for disabled children’s access to cultural institutions.

‘The Phoenix and the Unicorn’ chronicles Bowen’s path from parent to disability rights campaigner. The book examines how her family’s experience with childhood disability led to broader changes across the UK, including in the museum sector.

The memoir describes how Sam and Craig Bowen faced challenges becoming parents before navigating childhood disability. In the book, Sam Bowen describes the challenges faced by families with SEND (Special Educational Needs and Disabilities) children, representing 11% of the UK’s child population. The book addresses both practical barriers and the complex dynamics within disability advocacy communities.

From the newly published book, republished with permission from the author, Bowen describes winning a Museums + Heritage Award: 

“It was never about winning awards, getting recognition or garnering sympathy for me. Campaigning and advocating for something so near to your heart can be dangerous to your well-being and requires skills in self-care and self-awareness that I possibly didn’t possess at the start of my journey. I learned, as so many do, along the way, and I didn’t always learn the first time or via the easiest route. Many aspects of advocating for disabled children, in particular, are challenged from within the disabled community itself. Some people argue passionately that you can’t and mustn’t speak for someone who is disabled if you are not yourself disabled.

To which I gently reply (because I know this observation often comes from a place of painful lived experience) that my child is like many SEND children who lack an actual voice and have need of their adult to express what exclusion and ableism does to them. I believe that the whole family experiences ableism when a disabled child is ‘othered’. In fact, families and loved ones of disabled people are covered by the same hate crime laws as those with protected characteristics. Lucy’s pain is my pain. Her struggle is my struggle. Her right to access society is my right to fight for it.

“I set out to change the museum sector, and I succeeded. On 18 May 2024, I sat in a sparkly gold dress in the Hilton Hotel on Park Lane in London for the Museums and Heritage Awards. The ballroom, resplendent with huge crystal chandeliers, tinkling glasses of wine and jammed with five hundred museum leaders, buzzed with excitement as the winner of that year’s Sector Impact Award was announced. My ears were muffled to the sound, as all I could hear was my blood thumping through them, but as the emcee spoke out my name, I felt a calm closure envelop me. I turned to Craig sitting to my left; he looked like a stunned goldfish.

“The whole room cheered, and people short-listed alongside me in the same category stood up clapping. I picked my way through the crowded room, looked out across a sea of faces and used the stage as my biggest platform yet to tell people about the website and why I shared my win with 11% of the UK’s child population who are SEND; I even told a joke. I’d just won the museum equivalent of a Best Actor Oscar for my work, and it felt very sexy and timely indeed!”

‘The Phoenix and the Unicorn: A mother’s memoir of raising her disabled daughter and their transformative journey’ is available now via Amazon.