Disabled, marginalized, stalled and walled

Yehyun Kim :: ctmirror.org

Alex Bode, left, listens to her speech therapist at home in North Branford. Bode, who likes people and has spent most of her time at home during the pandemic, said, “I mean it’s very boring. I have nothing to do.”

As a bilingual health information specialist for PATH P2P Family Voices CT and National Family Voices Cultural Responsiveness Telehealth Team, I offer more than professional expertise as well as despair for the marginalized within marginalized communities. I am a Latina with disabilities, adoptive mother of 17-year-old twins with special needs and a thriving toddler.

Doris Maldonado

Between my children and I, we have over 15 physical and mental health disabilities making us immunocompromised. Our family lost four matriarchs last year including my mother. My eldest son, a junior in high school, survived 16 days with a false negative COVID diagnosis right after the world shut down, only to have my mother pass the following month and two aunts every other month after. I’ve had electrical shock treatments twice to my heart and subsequent PTSD concluding in securing a will and DNR.

Health access is an essential human and civil right. Access to the vaccine is considered essential, but only for targeted and protected classes as we faced survival of the fittest when persons with disabilities were left waiting for testing and medical attention nearly a year ago. Our communities remain disparaged by health, housing, food, education and employment insecurities. Without health, the rest have become a pipe dream further ostracizing our marginalized.

My son and I suffer with very tangible fears of contamination and trauma daily. The opportunity of procuring a vaccine has masked the overwhelming fear of death as we attempt to seek medical attention virtually when not buried by lapsed internet bandwidth, adequate devices and funding to maintain communication.

Our increased providers, educational and family counseling along with access to peer and support groups have helped Band Aid our challenges as we hope for tomorrow and beyond the 346 days when we were forgotten and remanded to isolation.

As a guardian ad litem, certified health worker, youth mental health worker, teacher and faith-based leader, I’ve advocated for our people throughout their lifespan and their civil rights in pursuit of happiness.

It’s health. In this pursuit of equity, I’ve offered, through PATH P2P FV Connecticut’s 34 years of family- centered support. We’ve offered family-centered health information to empower dignity. Yet, I cannot, we cannot empower, support, educate and rationalize the vaccine distribution when it blatantly disregards the most marginalized with disabilities amongst the already marginalized.

Health, like the COVID 19 vaccine, has been ordered and shipped awaiting consumption at a satellite near you, but delivery for many has been stalled and WALLED.

Please help me prevent burying our children or leaving them behind, orphaned as I was. Will you put us all on the right path?

Doris Maldonado is a bilingual health information specialist for PATH P2P Family Voices CT.

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