A common phrase you’ll hear in the disability community is, “I’m tired of being tired.” Constantly advocating for accessible, quality healthcare, transportation safety, and supplies necessary for my well-being often feels like weathering a never-ending storm. It’s deeply exhausting to navigate a world not designed for me. What’s more challenging is the toll advocacy has taken on my mental health.
As a wheelchair user with a physical disability living in New York, it’s becoming extremely difficult, year after year, to live the way I want in my community. People with disabilities continue to face threats at every corner, all of which weigh heavily on our minds. The state chose to implement a single fiscal intermediary to administer the Consumer Directed Personal Assistance Services (CDPAS) program, which is designed for and with people with physical disabilities, to allow aides to perform life-sustaining services in the community. Budget cuts continue to reduce funding for crucial services, and the state is reducing the number of people in the Health Home program, displacing people with disabilities.
According to the National Center for Biotechnology Information, an estimated 17.4 million adults with disabilities reported frequent mental distress across the United States. Among adults with disabilities, those with both cognitive and mobility disabilities—55.6 percent—most frequently reported mental distress. This comes as no surprise because our nightmare never ends.
As co-leader of the Civics League for Disability Rights (CLDR), an independent, volunteer-led group of New Yorkers with disabilities who advocate for themselves and their community to emphasize the challenges people with disabilities face, I continue to hear the horror stories of those who have waited months for wheelchair repairs. We hear about struggles with skin breakdowns, pressure wounds, and poor-quality supplies. It’s challenging to ignore the mental and emotional fatigue that comes with fighting for basic necessities.
As someone with muscular dystrophy, I currently face my own health challenges and have found myself buying my own supplies to support myself because I’m not receiving what I need to live. I am angry, uncomfortable, and without peace of mind. When you’re constantly battling to survive, you lose so much time. When you are limited to how much money you can earn, it’s devastating. Without my personal aide, I couldn’t work, eat, or travel. There’s little breathing room and plenty of uncertainty.
What we need is change—now. The healthcare system is broken, not breaking. To the best of our abilities, we have to prioritize our personal wellness because the truth is, though we are tired, the fight can’t stop. Advocacy, the powerful tool that exhausts us, also empowers us and allows us to be heard.
The Civics League has launched an advocacy campaign aimed at demanding that the New York State Department of Health (DOH) fulfill its longtime promise of establishing a new specialized program to support people with disabilities. We need you to take action with us! Connect with me at civicsleague@gmail.com to join the fight and learn how you can make a difference. Our lives depend on it.
Opinions expressed are solely those of the writer(s) and do not necessarily reflect the opinions of Able News at The Viscardi Center and/or The Viscardi Center.