Disability with technology line icon set.

Reflecting on the Struggle for Disability Rights a Year into the Pandemic

By Amalia Sweet

On March 9, the Petrie-Flom Center and Harvard Law School Project on Disability gathered a panel to discuss the extent to which the pandemic has set back progress toward ensuring the rights of persons with disabilities.

Though calls for solidarity in March 2020 declared the emerging pandemic to be a “great equalizer,” the past 12 months have demonstrated how the pandemic has exacerbated existing social inequalities, disproportionately impacting the already marginalized.

The panel discussion, hosted by Petrie-Flom Center Senior Fellow in Global Health and Rights Alicia Ely Yamin and moderated by Harvard Law School Project on Disability Executive Director Michael Ashley Stein, provided voice to the uniquely and acutely devastating impacts of the pandemic on persons with disabilities, who are still struggling to secure protection of their basic rights.

Amid the pandemic, “it was as if the rights of people with disabilities were a luxury or side constraint to be considered after systems first responded to COVID,” said panelist Gerard Quinn, current United Nations (UN) Special Rapporteur on the rights of persons with disabilities.

Rather than “level the playing field,” the pandemic “put a large magnifying glass on the already existing inequalities and cracks in our social support systems,” Quinn explained.

For example, in the U.S., special education students have been disproportionately impacted by the shift to remote learning. Melissa Mendoza, speaking on behalf of the Special Education Services Team from the WORLD Policy Analysis Center at the UCLA Fielding School of Public Health, outlined the issues.

She described her team’s ongoing efforts to document and assess districts’ attempts to meet the needs of their students with disabilities. Having gathered an advisory committee in September, featuring a wide range of stakeholders, the Special Education Services Team found two major points of concern: the inadequacy of current approaches to service provision and the loss of many compensatory education services. They are currently conducting an internet survey of publicly available information from school district websites and interviews with district leaders and practitioners to better prepare for when restrictions are lifted and schools reopen.

Soumitra Pathare, a consultant psychiatrist and director of the Centre for Mental Health Law and Policy at the Indian Law Society, addressed the impact of the pandemic on persons with mental disabilities in low- and middle-income countries.

In India, Pathare said, mental health services, scant even during normal times, were abruptly cut off at the start of the pandemic. Last spring, physicians and residents in psychiatry were diverted to COVID-related duties, leaving a vacuum for acute psychiatric care. Many mental health wards were closed and converted to COVID-isolation wards, forcing patients to return home to their families.

Pathare questioned the expectation that families could suddenly provide adequate care – during a pandemic – when they were unable to do so previously. Moreover, many psychotropic medications were suddenly withdrawn amid supply chain disruptions, and newly imposed travel restrictions prevented patients from returning to hospitals even when wards did reopen.

The swift lockdown of stores, including liquor stores, forced many alcoholics into rapid withdrawal, leading to a spike of suicides. “Is it fair,” Pathare asked, “to withdraw people from substances that they’re dependent on while you’re not able to provide them with services that might be able to help them?”

Tony Phillips, former president of and sitting board member of the Self-Advocacy Association of New York State, painted a similarly bleak picture of the state of affairs for disabled people in high-income countries. After being told he needed surgery following a brief hospitalization last February, Phillips, who has cerebral palsy, found himself thwarted at every turn in his quest to obtain the necessary medical procedure. With COVID-related visitation restrictions, Phillips was cut off from his usual support networks, and had to fight to receive the support he needed simply to operate a telephone. Moreover, Phillips was forced repeatedly to prove that he was capable of consenting to medical procedures. After eight months delay of his operation, Phillips’ condition had deteriorated to such an extent that he required a more invasive procedure.

Taken together, the panelists’ accounts offered a grim view of the ongoing struggle persons with disabilities face in securing basic rights and services, both domestically and abroad. When asked for silver linings coming out of the pandemic, the panelists’ offerings were slim. Mendoza had “no specific recommendations.” Pathare went as far as to say he did “not see a lot of positives or anything to take home.”

Phillips stressed the importance of effectively supporting people with disabilities in advocating on their own behalf, a sentiment which Quinn echoed, saying that many problems could be avoided by consulting directly with people with disabilities to address their needs.

“The penny is beginning to drop,” Quinn cautioned. “unless you engage constructively with the communities directly affected… your response is neither going to be legitimate nor efficient.” It remains to be seen whether change will come about in response to the pandemic.

“It’s an uphill struggle,” Quinn said, “but at least the window is slightly ajar.”

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.