When I was in the third grade, a boy named Nestor was added to my school who, like me, was born blind. He was put in my class, even though he was a year younger and had never been to school before, because of our blindness. Before then, he had, in effect, been hidden away from society and had spent much of his life sitting in a chair listening to the radio — something my mother, in contrast, always refused to let me do. My mother’s insistence that I be active was actually quite unusual in those days. The way Nestor’s parents raised him was more the norm. People just didn’t know what to do with kids like us.
Disability rights advocate, Amber DiPietra defines ableism as, “Dozens of small, often subconscious assumptions, that are made about people with disabilities. The assumptions create the limits, instead of the other way around.” Rather than being expected to contribute to society as active, engaged citizens and workers, many people with disabilities are raised with a sense that we will forever remain part of a permanent “dependent class.” We have largely been seen as a commodity to be exploited — our needs parasitically considered through the lens of the profit they might produce, via skilled nursing facilities and supportive housing, for example. Non-disabled people often have a patronizing habit of viewing people with disabilities as monolithically weak and in need of care, while simultaneously arranging society to best exploit our needs.
But the Americans with Disabilities Act was passed in 1990 because thousands of tough-as-nails folks with disabilities got together and demanded that they be treated as equals. Thanks to what I like to call “the ADA generation,” today’s disability community is better educated than ever, and eager to work. The opportunities provided by new technologies and expanding access are forcing society to come face to face with the reality that having a disability is, in itself, not an impediment to living a full, productive life. Restricted access to supports and services, including affordable health care, is.
Consider the fact that the landmark Affordable Care Act mandated that there be mental health and physical disability parity in coverage. As a result, there was a huge group of people — folks with bipolar disorder who need medications, for example — who were suddenly eligible for coverage through the open marketplace making it possible for people with disabilities to work and have their healthcare needs met, without relying on public benefits to survive. The ACA allowed many people to leave the social safety net and go to work, some for the first time. If the ACA is repealed, what will these people do? The answer is obvious: people with disabilities will be forced to “stay poor” and jobless in order to get public benefits, and, like Nestor, will be relegated back to our chairs and radios at home.
The truth is, health care is a civil right and until we treat it as such, we’ll be ensuring that a great many people never reach their full potential. This has a terrible impact on the overall work force, and on American prosperity, more broadly. As we witness the stunning disregard for the lives of the fully one-half of our nation with pre-existing conditions, including children, who stand to lose health insurance as the Trump administration works to repeal the Affordable Care Act, people of conscience everywhere are urgently needed in the struggle to ensure the rights of the most marginalized.
Despite our progress, people with disabilities remain among the most disenfranchised in our society. The question is whether we will continue widening access for all people in our quest to build a more perfect union, or whether we will allow our rights to be rolled back as the elite consolidate their powers at the expense of people with disabilities. These are dire times and much hangs in the balance. Persistent public pressure is our best tool in fighting outrageous attacks like these. Please join me by contacting your representatives today to speak up for the Affordable Care Act.
Jessie Lorenz is executive director of the Independent Living Resource Center San Francisco.