August 11, 2020
Albert P. died alone in a nursing home from COVID-19. because of new safety regulations, his daughter, Gita, was not allowed to visit. In the days before his death, she told me, the nursing home staffers “spoke to my mom at length about how great my dad was doing…. [They] said, ‘He’s eating. He’s drinking water. He’s smiling. He’s doing really well.’” Gita wasn’t so sure. She said there were previous issues with her father’s care: hours spent sitting in soiled bedsheets, medication mismanagement, and missed meals...The rapid spread of infection in nursing homes isn’t new. Before the pandemic, 82 percent of nursing homes had citations for failure to adequately prevent or control the spread of infection; about half had multiple citations. Opportunistic infections by pathogens like Clostridium difficile thrive in nursing homes, and those usually caused by neglect, like sepsis and urinary tract infections, are prevalent. COVID-19 just spreads more easily and does its deadly work faster. In New York magazine, music and architecture critic Justin Davidson recently imagined what it would take to build better nursing homes in the wake of COVID-19. Perhaps if we had smaller facilities or installed wet bars, people would like them better. He emphasized the need for more funding. But the problem with nursing homes is not that they need wood floors instead of vinyl or that food is served on plastic trays. The problem is that they are total institutions: secluded facilities where staffs tightly control the lives of vulnerable people...Nursing homes allow for an economy of scale. Feeding, washing, and otherwise seeing to the needs of elderly and disabled residents all at once is more efficient than addressing those needs on an individual basis. But this efficiency comes at the expense of human dignity. Ari Ne’eman, a senior research associate at the Harvard Law School Project on Disability, points out, “From Grandpa Simpson to Junior Soprano, popular culture constantly acknowledges our society’s worst-kept secret: Nursing homes are awful places to live. Unfortunately, we’ve set up our health care and human services systems to send vast numbers of seniors and people with disabilities there anyway.”
Judy Heumann remembers the day she went to register for kindergarten in 1952. She’d gotten dressed up and her mother had pulled her wheelchair up a flight of stairs before the principal intervened. Her disability, he said, meant she was not allowed to attend the school. Heumann had polio as a child, and it left her legs paralyzed and limited her use of her hands and arms. Throughout her time in the educational system, and after she graduated and became a teacher and activist, she had to fight for access at every turn...The ADA was designed to protect people with disabilities against discrimination and to ensure that they can participate fully in employment, state and local government services, public accommodations, transportation and telecommunications. The results today are powerful: most public buses have lifts for wheelchairs; disabled children attend school alongside their nondisabled peers; and employers are generally aware that people with disabilities have civil rights they cannot violate. But if the 61 million Americans with disabilities are now less likely to confront the same problems that Heumann did decades ago, their fight for true equality is far from over. “The ADA is ultimately a promise that has been tremendously impactful in some areas and has yet to be fulfilled in other areas,” says Ari Ne’eman, a senior research associate at the Harvard Law School Project on Disability and the co-founder of the Autistic Self Advocacy Network... Ne’eman, who is writing a book about the history of American disability advocacy, says the increase in people publicly embracing their disability as part of their identity has played an important role in shaping new public attitudes.
The director of the federal health department’s civil rights office said on Saturday that his office was opening a series of civil rights investigations to ensure that states did not allow medical providers to discriminate on the basis of disabilities, race, age or certain other factors when deciding who would receive lifesaving medical care during the coronavirus emergency. The office released a new bulletin on civil rights during the coronavirus crisis, days after disability rights advocates filed complaints arguing that protocols to ration lifesaving medical care adopted by Alabama and Washington State were discriminatory...The bulletin “represents an important first step in protecting the rights of people with disabilities in the current crisis,” said Ari Ne’eman, a visiting scholar at the Lurie Institute for Disability Policy at Brandeis University and a senior research associate at the Harvard Law School Project on Disability. He said there was an “urgent need for comprehensive guidance.”
During the final presidential debate of 2019, one of the moderators posed a question about a topic that rarely gets attention on the debate stage: What steps would candidates take to help disabled people get more integrated into the workforce and their local communities? For Andrew Yang, the question was both political and personal. His oldest son, Christopher, is on the autism spectrum...At the event in Salem, Yang rolled out a new plan to fund research and support children with disabilities and their families. Ari Ne'eman, a senior research associate at Harvard Law School's Project on Disability and a co-founder of the Autistic Self Advocacy Network, said he welcomed some parts of Yang's plan, including his commitment to ending seclusion as a punishment in schools. He also praised Yang's call for increased funding for the federal law called the Individuals with Disabilities Education Act, which gives every child the right to services and accommodations that will allow them to learn.