What Health Care Means to Me (by Jeneva Stone)
Rob Stone, now 23 years old, supporting Little Lobbyists & showing off all his advocacy pins
As the mother of a young man with complex medical needs and disabilities, health care means peace of mind: knowing that Rob’s medical and adaptive needs will be met. That Rob can take advantage of technology and medical advances, such as his augmentative and alternative communication (AAC) device. Rob’s Tobii EyeMobile gives him the ability to speak for himself, and he has a lot to say!
Access to quality health care hasn’t been easy for our family. Protecting Rob’s health took us on a 14-year odyssey through seven different private insurers, to the Affordable Care Act (ACA), to, finally, a Medicaid waiver. We learned the hard way that our country’s health care system is too byzantine, too fragmented, and it must be fixed.
What else does health care mean to me? That one day soon, our protracted civil war over the right to health care will be over. That all of us will have equal access to technology and medical advances. Protecting the ACA is an important first step toward health care for all.
The U.S. Supreme Court will hear oral arguments November 10 on the Trump Administration’s challenge to the ACA, a case that will decide its fate. We must hope SCOTUS recognizes health care as a necessity, not a choice. This case is the decade-long culmination of Republican efforts to undermine our health care, offering no plan to replace it other than a nebulous idea that the right “to choose” will give us health care--as if doctors treated patients with rainbows and lollipops.
Acknowledging that health care for all is 100% necessary shouldn’t be this hard, but we live in a society of massive contradictions: If I could make a Venn diagram of conservative positions related to healthcare and "liberty," I’d find significant overlap among persons who claim to act from a religious imperative, deplore abortion, but are quite willing to endorse the use of the verb "to choose,” as in, "I should be able to choose not to buy health insurance," as though that statement has any connection with reality or responsibility, personal or otherwise.
Choosing not to have health care is an act of gross societal negligence. By choosing not to, you demand that other people shoulder the bills you will inevitably incur when you require (at a minimum) emergency room care, unless you carry a card in your wallet that says you prefer to bleed out on the macadam after your car accident. We must all chip in, as well as support those who cannot afford to do so.
Especially now, during a pandemic, our health depends on the health of those around us. Yet Republican leadership is still trying to convince us that health care is not a right, but an undeserved entitlement. We don’t have a right to remain healthy, but we do have a right to be sick and stay sick? Even die? Is that why Republicans want to overturn the ACA? Because the ACA takes away our right to “choose” poor health?
Make no mistake about it: Health care is a human right. Medical research and technology is the moon race of this century. Whenever I sit down with doctors or durable medical equipment vendors or pharmacists, I'm stunned by the sheer ingenuity of this country. For those who hunger and thirst for adaptations and answers to their medical problems, let alone righteousness, there's someone out there who's spent their working years thinking about your problems and how to solve them. All persons need access to these advances --despite cost issues--and we must dedicate ourselves to ensuring that access.
We must elect politicians who realize that critical investment must be made in health infrastructure, that health care is part of our larger, job-creating economy, and that we must give all citizens equal access to medical care. If we start from the perspective of cost, assuming that our collective resources are puny (they're not), we'll never get anywhere. If we point fingers of blame, we'll just self-destruct. We have to start from the perspective of humanitarian investment and what this investment will yield for our country, its citizens, and the world.
In the days leading up to the most consequential election in our history, ask yourself this: Have we become a country that looks to the future, or a nation of Hobbits, content to spend our lives by our own home fires, looking at the past? What happened to us? And, more importantly, what will happen to us?
Jeneva Stone is the blog manager of Little Lobbyists, and Rob’s mom.