Since I launched my website along with my blog and Instagram I have been digging deep into the world of social media and marketing, and the first opportunity I noticed was the chance to tell my story via podcast interviews with individuals that have a passion for advocating for disability rights and neurodiversity.
Just last week I had a podcast pre-interview with Deanna from The Neuroaffirming Parent Podcast. From the moment the meeting started, we had an instant connection and we didn’t stop chatting until the timer on our video ran out and we quickly reconnected using an alternate video call.
While I spoke with Deanna, she asked me a question that stuck in my mind and kept me thinking long after it was over. It was a question that helped me make connections that I had never known existed and began to unravel the truth in my life as the person I was meant to become, the person that was always within me but hadn’t yet to be self-actualized.
She asked me this, “Do you think your background in Public Health helped prepare you in any way for raising a disabled child?” My immediate response was “Absolutely not.” I even scoffed. As a mom with a child with high support needs, I had no idea what I was doing, and I was definitely not prepared for the challenges that would arise. Public Health and raising a disabled child were two different worlds as far as I was concerned. After I answered so quickly, I felt a pang, like maybe I had jumped the gun. Maybe there was some connection, but nothing came to mind in the days that followed, and I certainly wouldn’t have been able to construct a response in the moment of our meeting.
As the week passed, the question kept popping up in my head and must have been subconsciously working itself out, because just as I sat down to my desk to work, the answer popped into my head like the camera lens finally came into full focus and a picture I hadn’t been able to decipher was now completely clear.
The truth is, when I was going through my Public Health program, I was alarmed by the constant need to tell communities how they should live healthier lives through healthy eating and exercise, when they had so many unmet needs that certainly needed to be addressed first. I was floored by the number of universities and institutions that had been stepping into disenfranchised communities and incentivizing health programs and exercise classes when there was not one accessible grocery store or safe place to take a walk. I didn’t understand why we were addressing a first world problem in a community that essentially had developing and third world challenges.
After my two years in graduate school, I wrote my culminating paper titled: Community Organizing and Community Building for Health in Disenfranchised Populations. It basically outlined all the ways in which we, as a society, were going wrong in addressing our health epidemic in lower socioeconomic areas. The paper was presented to a small group of colleagues, and I graduated and moved on with life.
I look back now and realize I had always been a dissenter, a questioner of society. I saw the inequities back then in the public health world, and now, I see where we are going wrong in the disability world. This time it’s personal and I won’t be dropping the subject any time soon.
I now fully understand, treating our disabled children like they are assignments to be completed and problems to be fixed is a Public Health problem. My blog, my website, my memoir and my Instagram are my paper on how we are failing our disabled children because we are overlooking the true priority. Which is and always should be to treat our disabled children like we tell every parent to treat their typical kiddos, like human beings, with love, kindness, and respect.
Please stop pressuring our parents and caregivers to “work hard” to get their child “caught up”. Please stop prioritizing our children’s physical abilities and “acceptable behavior” over their mental and emotional well-being. Please stop dehumanizing our disabled children and abandoning our families for the sake of meeting standards that are impossible for us to meet. Please see us, accept us, support us, accommodate us, and love us for who we are.
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