I recently visited the Fundació Joan Miró in Barcelona, a museum dedicated to the Spanish artist’s iconoclastic creations. For an academic on vacation, the scene was idyllic: an art-festooned courtyard; a fluttering white canopy filtering the Mediterranean sun; and an ice-cold Diet Coke. What more could one ask for?
In my case, it would have been the grant I was hoping to receive. As I sat and pondered the art I had just enjoyed, I foolishly checked my email to find a message asking me to downsize a large grant into a smaller project. Not exactly good news, but not altogether bad.
Several colleagues and I had proposed a project to study the legal rights of people with severe brain injury. Their plight is terrible: They are often dispatched from the hospitals where their lives had been saved to nursing homes where they receive what is euphemistically called custodial care rather than skilled medical care.
Their families struggle to get them rehabilitation and basic medical care, and often even a credible diagnosis. Upward of 40 percent of traumatic brain injury patients in chronic care who are thought to be in a vegetative state are actually in a minimally conscious state, a brain state introduced into the medical literature in 2002. In contrast to the unconscious vegetative state, patients who are minimally conscious are liminally aware and episodically demonstrate responsiveness to their surroundings.
Misdiagnosing minimally conscious patients as vegetative has staggering implications for pain management, as people in the minimally conscious state can feel pain but those in a vegetative state cannot. If the diagnosis is wrong, you’re denying people pain relief and comfort.
Just as important, some minimally conscious patients retain the capacity to communicate with others. When this potential is overlooked, they are denied their voice, along with human connection and the comfort of friends and family.
These injustices are all the more egregious at a time when medical progress is changing our understanding of severe brain injuries. Helping patients with them regain the ability to communicate is now more than a scientific aspiration — it is becoming a reality with new drugs, devices, and brain imaging techniques that were unimaginable decades ago.
Some of this is still experimental, but imagine a long-silent patient in the minimally conscious state who learns to talk again with the aid of deep-brain stimulation. Or a loved one who witnesses those first words. As ties severed by injury are repaired by advances in neuroscience, families are made whole. Lives are rebuilt. It is an amazing thing to witness.
Regaining the ability to communicate is about more than the restoration of function. It is also about overcoming the societal segregation that sequesters those with severe brain injury in chronic care, far from our collective gaze, ignored and abandoned.
Over the past 10 years, I have interviewed more than 60 families touched by severe brain injury as research for my book, “Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Consciousness.” The vulnerability of these patients is staggering, the heartache of their families enduring.
That’s where the grant comes in. We want to study how the law might provide protection to this group of individuals. We believe that their marginalization constitutes a violation of the Americans with Disabilities Act (ADA), which calls for civil rights for people with disabilities so they can be fully integrated into civil society.
A lot has changed since the ADA was passed in 1990. At that time, the focus was on mobility and barriers to public accommodations. Today, disability rights must tackle a new question: In light of advances in neuroscience, how do we integrate people with severe cognitive impairment into civil society? The goals are the same — integrating people into the mainstream — but the remedies will be different.
These individuals need more than just physical access. They need drugs, devices, and rehabilitation to help them communicate and rejoin their communities. But that won’t happen unless they receive the same legal protections afforded to earlier generations of disabled Americans.
The grant reviewers were skeptical. They questioned whether neglect of this population constitutes violations of the ADA and if our scholarship would lead to meaningful legal reform. Intrigued but not convinced by our argument, they gave us the chance to make our case, albeit on a smaller canvas.
As we work to that end, we will draw inspiration from Miró, the contrarian whose beautiful creations are today celebrated in the mainstream. A 2008 New Yorker review of a Miró exhibit at the Museum of Modern Art even called him “tame.”
That’s perhaps not a welcome ending for a nonconformist. But Miró’s incorporation into our cultural inheritance reminds us that radical departures from conventional thinking are sometimes necessary — and even desirable — for progress. Just think of how Thurgood Marshall and the NAACP’s Legal Defense Fund chipped away at the U.S. Supreme Court’s 1896 “separate but equal” decision that made segregation legal across the American South. Their work culminated in the court’s 1954 landmark Brown v. Board of Education of Topeka decision, which made segregation illegal.
Individuals with severe brain injuries are segregated from American society, set aside as separate and unequal. It is now time to appreciate that civil rights must be extended to them.
Rather than merely preserving the civil rights gains that have been made since the 1960s, we need to continue to expand them. As we learn more about severe brain injuries, public policy must keep up with science and medicine. Our understanding of these patients has changed and so must our enforcement of American disability law.
Their time is coming. When it does, what I have written here may be thought tame. Unlike Miró, I’d welcome that.
Joseph J. Fins, M.D., is professor of medical ethics and medicine and chief of the Division of Medical Ethics at Weill Cornell Medicine, a senior research scholar at Yale Law School, and a fellow ambassador of the New York Academy of Medicine.