Jody Stantos Talks About Her Film…
Two years ago, I began work on a documentary for public television about the millions of people with disabilities worldwide locked away in orphanages, psychiatric facilities, and other institutions. In one rehabilitation center in Mexico, I saw beds that turned into cages and children with cerebral palsy whose limbs were wrapped so tightly in bandages and duct tape, they essentially had been “mummified” into submission. When I returned to the US, I received an award for my investigation from an organization in Western Massachusetts that works to provide access to people with disabilities. After the ceremony, a staff member told me about a 31-year-old man that brought me right back to the horrific abuse I’d witnessed abroad.
As a 10-year-old boy living in New York, Adam Graziano had suffered a traumatic brain injury while in-line staking without a helmet. Six months after emerging from a five-week coma, he attended a ribbon-cutting ceremony for New York City’s first traumatic brain injury unit for children. “Wear your helmet,” he urged other kids as part of a “get it on!” public education campaign featured in the New York Daily News. While doctors cautioned that Adam would never be the same again, no one imagined that 20 years later, he would be languishing in a nursing home in Holyoke, Massachusetts – one of several institutions he’d lived in for the last decade.
Given the progress the US has made in enacting laws to ensure the rights of people with disabilities, particularly the right to be integrated into society, I initially thought Adam’s case was the exception in this country. But the deeper I dug, the wider the floodgates opened – and the more retaliatory the American institutions I investigated became. While I was never arrested during my inspections of facilities abroad, the first time I tried to visit Adam, I was escorted off the premises by police and threatened with two years in prison. Adam himself faced much harsher penalties as he pursued legal avenues to leave. He was subjected to chemical restraints administered against his consent and was denied his right to visitors. Desperate to reach the outside world, Adam took to Facebook, posting a photo of his torso pockmarked with bruises and writing: “These motherfuckers are FUNKEN crazy at this neroreablation center…Can anyone help?” A lawyer with the Disability Law Center later confirmed the bruises were from staff holding Adam down and injecting him with meds.
When Congress passed the Americans with Disabilities Act in 1990, Senator Edward Kennedy called the legislation an “emancipation proclamation” for people with disabilities. No doubt, we’ve seen much progress since then, with state officials reacting swiftly last year to reports of abuse at the Peck School in Holyoke, Massachusetts, for instance. On the surface, New York State has been a leader in deinstitutionalization. At one time, the state had 22 institutions serving more than 27,000 people; by 2017 only two facilities in the state will be left, serving a total of just 150 people.
However, NY officials have engaged in a kind of shell game with their state’s most vulnerable population. Based on New York Department of Health reports gathered through FOIL requests, the state appears to be paying almost $80 million a year to export 800 of its neediest nursing home patients to Massachusetts, New Jersey, and Connecticut. At the Holyoke Rehabilitation Center (HRC) where Adam lives, New Yorkers fill 133 of the nursing home’s 162 beds. “It’s harder to create home-based and other support programs than to just outplace them somewhere else,” says Disability Rights New York executive director Tim Clune. “In terms of quality control and patient discharge, New York can simply wash its hands.”
“It’s kind of like rent-a-bed,” adds Northampton disability rights attorney Steven Schwartz. With just one out-of-state patient bringing in as much as $180,000 a year, agencies like HRC send representatives to New York hospitals to market to families caring for loved ones who have suffered a brain injury. The placements are supposed to be temporary, but some patients end up staying for close to a decade. Schwartz says this outsourcing is happening at other types of places as well, including the notoriously punitive Judge Rotenberg Educational Center in Canton, Massachusetts.
Twenty-six years after the ADA, how can so many men, women, and children labeled with disabilities still be confined in institutions? The reality is that big business is often more powerful than the government and courts. Providers like HRC shape how the system operates, from the type of care patients receive to how much states pay for it. They petition the courts to appoint guardians for their patients (often the same few people), who have almost complete control over every aspect of their wards’ lives, including whether they ever leave the institution and how much they are medicated. Industry groups also have opposed mandating community services, saying such measures could jeopardize funding for those who really need to be in nursing homes. Lastly, many states also have avoided the arduous process of revising budget structures that favor institutions.
On a more subtle level, the continued isolation of Americans with disabilities seems rooted in fears about difference, resulting in the normalization of what amounts to blatant discrimination. In the city of Springfield, Massachusetts, 50 percent of students with emotional disturbances are segregated to the Public Day School, which operates elementary, middle, and high schools in three locations in the city. According to one attorney working on a federal lawsuit against Springfield, city officials have contracted with a private company to provide “behaviorists” to carry out BIPS (behavioral intervention plans) at the schools. These BIPS include subjecting students to facedown restraints and isolating them in a padded room. At the high school, teens are deprived of a prom and yearbook, athletic teams, and even a cafeteria.
When the Supreme Court ruled in 1999 that institutionalizing Americans with disabilities violated the ADA (a landmark case known as Olmstead), 29 states produced plans to move disabled people out of facilities. However, according to the Justice Department, 400,000 people are still on state waiting lists for home-based care. The post-ADA experiences of Americans with disabilities parallel those of people of color after the passage of the Civil Rights Act. Journalists and the entire country again need to take a stand, even though it is not always easy or comfortable for them to do so.
While touring an orphanage in the Republic of Georgia for my PBS documentary, I met a three-year-old boy named Erekle whose head was the size of a basketball due to his advanced hydrocephalus. Despite the excruciating pressure being placed on his brain, doctors had determined he was “too far gone” to merit any type of treatment. When I returned to the States, I began a campaign to obtain surgery for the boy – to have a shunt inserted that would alleviate the pressure on his brain. One doctor friend told me I should focus on children who had a future – not a child who would be severely brain damaged for the rest of his life. As I contemplated flying back to Georgia to help Erekle, I consulted with an ethicist at Baystate Medical Center. “The only thing worse than being abandoned is being ignored,” he wrote in an email back to me. “To the inner-voice that might chime, ‘Why focus on someone who can’t appreciate it?’ I would say this: “if rights are inalienable, then they exist whether persons are aware of them or not.”