Finding Freedom In A Wheelchair Called “Freedom”

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Redefining & Using My Abilities

As I was moving my arms back and forth next to my wife in our very first protest, chanting Black Lives Matter, as two beautiful strong brown skinned African Americans amid a COVID-19 and Racism pandemic. I was thankfully reflecting on how my GRIT freedom wheelchair gave me the freedom to have the opportunity to physically participate in a protest that meant so much to me in needing an outlet to reclaim my identity and fight against systemic racism and oppression in need of massive change. Freedom gave me physical freedom by providing me a wheelchair to move and participate in life in a way my body can’t. My GRIT Freedom wheelchair is an extension of my body so that I can fight for freedom for other parts of who I am, my family, friends, and other’s that are marginalized, including the larger black community I am a part of full of beautiful people and because ALL BLACK LIVES MATTER.

Fighting for Change

Under my face mask I yell, “George Floyd and Black Lives Matter”. My life matters. My wife’s life matters. Our daughter’s life matters. Our family member’s lives matter. Our grandson who will be born soon, his life matters. I take a deep breath. I am moving in the crowd. I am chanting. I am living. I am expressing my voice. I am fighting for change. I am thankful for this opportunity. Not more than three years before this moment, I wouldn’t be here, right now, in this significant moment. I fought for this. I fought for so much. We both had. And we will continue to. I will continue to live into my authentic self and hope for the day, the day that ALL BLACK LIVES MATTER is an everyday lived experience embedded in equity within the foundation and structures of the institutions that make up our society. The day in which all black and brown lives can move and live freely without oppression and the indication and lived experience that being black in the United States is a crime and death sentence.

Life Changing Turning Point

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A string of appointments one right after another left me angry, devastated, and hopeless. I had been watching everything in my life as I knew it slip away, and according to the doctors there was nothing more I could do, and one even suggested I get my affairs in order and start looking into 24 hour nursing home care. This came at the age of 32 and a diagnosis of unspecified dementia and a progressive motor neuron disorder (genetic cause unknown). I had watched my body and it’s abilities change both physically and cognitively. The tremors, spasticity, muscle weakness and pain impacted being able to create art and perform daily living activities, my ability to read and write, participate in outdoor activities, withdrawing from a PhD program, and significant changes in my ability to drive while transitioning to a walker and wheelchair; were all fading away along with the life and person I was. Never did I imagine at that time, I would be where I am and engage in life the way I am today. I went from life being over to finding a new normal, redefining my life, taking chances, hoping for the future, and navigating taking steps to live my best life.

A New Lease

From the very first walk I took in Freedom together with my best friend, who is now my wife, it was like flying. I no longer felt like I was trapped in the jail of the disease that had taken over and was controlling my body. Over time I started exploring new and different ways I could engage my mind and body, which I learned is a form of neuroplasticity. Freedom opened the door to more physical and cognitive freedoms in addition to exploring what healthy living and living my best life could look like for someone like me. It gave me a new lease on life, a lease I plan to continue fighting to grow with every chance I get. Fighting so that all parts of who I am may be authentically free to live fully – out and proud. Fighting so that all people may have the opportunity to live into their authentic selves safely, equally, and freely in all aspects of everyday life.