Reflections on Cerebral Palsy Awareness Month
March highlights Cerebral Palsy Awareness Month, and for many, this is a point of pride and celebration, for me this is a moment of reflection, a time to think about the journey and how I’ve come to a place where the role of disability is both a blend of the personal and the professional. I have often recalled the words of Rainer Maria Rilke when he wrote in Letters to A Young Poet, “Don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.”Having been born with Cerebral Palsy has laid the groundwork for how I perceive life. My earliest memories are a cacophony of images and sounds emphasizing my constant need to adapt to my surroundings and struggle with the whispers of others staring at me because of my funny gait or spasticity. I feel fortunate to have a loving and supportive family who instilled a belief in myself and gave me an uncanny ability to drown out the negativity and focus on what was in front of me which has served me well to this day.
My formative years were in a time before the internet, before YouTube, Instagram, TikTok, and various other forms of social media that have given people with disabilities a platform that has redefined Disability Culture and embodied a new vision of pride. Early on, the only time I was regularly amongst a community of other disabled people was during my weekly Physical and Occupational Therapy sessions at Newington Children’s Hospital. It was there I recognized that Cerebral Palsy was a big tent with a tremendous amount of nuance and diversity. But it was also a time that I started to feel a level of internal ableism, asking myself questions, like was I truly disabled enough because I was someone with a spastic right hemiparesis who could walk and focused on just trying to “fit in”. I lived in what I thought of as two worlds, the world of the disabled, and the world of the able-bodied. This internal shame was prompted by what I referred to as “perceptual anxiety” that was in part due to the lack of representation of persons with disabilities in mainstream culture, and a true embrace of Disability Pride.
I was faced with real existential demands about the path I wanted to take. As Rilke said, I had to live with those questions, I had to search for how my disability identity would form the man I would become and still becoming. The searcher in me began to rethink my relationship with my own disability while discovering a more public understanding. The dot com boom of the mid to late 90s was a true awakening and changed my life. It was the time I met Judy Heumann, John Kemp, and Matt Sapolin, each an extraordinary leader in the Disability Rights Movement, and each challenged me to acknowledge a greater understanding of disability rights, pride, and culture.
When I think about Cerebral Palsy Awareness Month, I reflect on my personal history, but also how that history is part of a larger tapestry that is in a constant state of flux. This is a month that should urge each of us who are part of this community to offer a verse to realize real change is possible and to ultimately find the answers you seek.
Head of Investment Operations
11 个月Great article
Director of Rehabilitation at Performance Plus Rehabilitative Care Inc.
1 年Exceptional summary of people’s true experiences.
Deeply touched by your kind reference, Jonathan! You've been a great contributor to improving the lives of thousands and thousands of people by writing and educating so many people! It's your fantastic gift that you're giving everyone.