When I turned twenty-five, my younger brother took to Facebook – in true millennial fashion – to wish me a happy birthday. (Relax, my beloved Zoomers: we’ve since migrated to Instagram.) “Cheers to you! Cheers to existential defiance!,” he wrote. That was five years ago, and I am still moved. This year, I turn twenty-five, again. I turn thirty, too. Let me explain. The medical establishment predicted that I wouldn’t live beyond the age of five, after having been diagnosed at age two with Spinal Muscular Atrophy — a genetic, degenerative illness that affects one in eleven thousand babies. For this reason, with each birthday that rolls around, I don’t just take stock of the years since my birth, but also the years since defying my prognosis. When I turn thirty this year, I will have also outlived my prognosis by twenty-five years.
What continues to move me so deeply about my brother’s virtual toast all those years ago is the invitation embedded in his words to celebrate my continued existence, despite the forces of despair that pervade the lives of young, disabled Black people like myself. And the forces that shatter lives like Jeremy McDole’s, known as “Bam Bam” by his friends and family, who never lived to celebrate his thirtieth birthday. He was twenty-eight when Wilmington law enforcement officers, in a 911 dispatch gone wrong, fired several shots into his body — killing the wheelchair-user on the scene. That was five years ago. No criminal charges against the officers responsible were filed. Together with activists in Delaware, Keandra McDole — Jeremy’s sister — who reached out to me over the summer via Instagram, has been desperately trying to keep the embers of justice burning. But, heartbreakingly, this was extinguished by the expiration of the statute of limitations almost a month ago.
I think about how I could have been Bam Bam. Then I remember, I am Bam Bam because he, like me, was so much more than the value the world assigns to us as disabled Black people. He was magnificent. That he lived among us must be celebrated. Disabled Black life is often accommodated, even tolerated, but never really quite celebrated. Celebration, in the broader context of the pursuit of justice, is not about denying the existence of despair, but rather about denying despair the power over our existence. I feel therefore that I must celebrate my existence – and Bam Bam’s – in defiance of a world that routinely and callously denies my disabled Black siblings the right to exist.
In the run-up to my birthday, and most certainly on the day itself, I will be raising my glass in honor of the refusal that flows through my bloodstream — the refusal to give up on life, the refusal to be less than extraordinary.
I am turning thirty against the backdrop of the refusal of Black people, from Wilmington to Johannesburg, to accept the brutality of injustice. I am outliving my prognosis against the backdrop of the refusal of disabled people to be made to disappear from public view. Taken together, I have every reason to celebrate. I sit firmly in a tradition of magnificent Black people, disabled people, and disabled Black people, who live through the vicissitudes of illness — be it in the human body or in the body politic — day in and day out. We love through the discomfort of our own bodies. We work through throbbing, persistent pain. We dream ourselves out of the constraints into which we are born.
We transcend, not our bodies, but the world itself. As I’ve said before, I seek to become the first physically disabled person to travel into space. Transcendence in space is the next logical step for me because, like all disabled Black people, I already defy the gravitational pull of a society that tries to diminish or disappear me. We are a living embodiment of possibility. That is worth celebrating. To Bam Bam, and to myself, I will raise a glass to our existential defiance.
On Oct. 22, TIME100 Talks will air a special episode focusing on the future of space exploration. The episode will highlight leaders, including Eddie Ndopu, whose efforts and insights are helping to shape that exploration—which will in turn shape the future of our world.
Watch Live: ti.me/3dEAg7O