From maltreatment by medical professionals to overpriced medication, disability rights activists say people with disabilities have been fighting for equity in healthcare for years. July marks Disability Pride Month and on Thursday, July 14, Disability Rights NY held a virtual discussion entitled, “Willowbrook & The Road to Inclusion: Ableism & Access to Health Care Systems,” to discuss the topic of healthcare equity.

 

Spearheaded by disability rights activists in the medical field, the forum explored historical beliefs about people with disabilities, systemic ableism, and how these views impact people with disabilities’ access to health care systems. It highlighted the struggles faced by individuals with disabilities in accessing medical care, the impact of ableism in healthcare and the strategies for combatting ableism in healthcare.

 

Ableism is defined as bias, prejudice, and discrimination against those who are not able-bodied. While most people look at this as obvious physical discrimination and verbal abuse, ableism runs much deeper than this, according to the activists.

 

Dr. Diana Cejas, MD, MPH, pediatric neurologist at the University of North Carolina at Chapel Hill and a faculty member of the Carolina Institute for Developmental Disabilities, gave some examples of the feedback she’s received from her patients. “They think that it is always this in-your-face kind of a thing, like, someone saying something rude to you, calling you rude names, using ableist language,” she said, of those unfamiliar with other more subtle forms of discrimination.

 

Cejas continued, “Of course, all of those things are examples, but I have a table over here which we ask our patients to get up on and that is completely inaccessible to a person who might have some mobility issues, who might be a wheelchair user.”

 

Meanwhile, Peppar Cyr, MPhil – MD/PhD candidate, said when it comes to eligibility for certain medication or procedures, especially things like transplants, certain categories of disabled people are, because of prevailing rules, excluded.

 

Cyr added, “A lot of places, this can be a lot less sort of in-your-face obvious. Particularly egregious, in my opinion, are situations where you have a healthcare service that is specifically for a particular disabled group, and yet is also specifically inaccessible to that same population,” she said.

In response to a question about the impact of inaccessibility to healthcare options by people with disabilities, Cejas and Cyr referenced a study carried out in the UK that showed that autistic people have shorter life expectancies due to lack of access to immediate healthcare.

 

“So much that is within medicine is inherently ableist, where you have people who, for example, [are] working with patients who might need a mobility device, who are younger than whatever is supposed to be the age you’re supposed to be able [eligible] to have one,” said Cejas.

 

“The stigma that comes with someone trying to access those devices from the medical providers, who will say things like, ‘I don’t want you to have this as a crutch. I don’t want this to be something that you rely upon,’ and really saying things that are very negative can really contribute to the deterioration of the doctor-patient partnership,” she added.

 

Cejas said this can also cause people to delay seeking the care they need. “Why would you want to come to a place where you’re thought to be either trying to gain something from the system, or access[ing] something that you’re not supposed to access?” she said.

 

“Quality of life,” according to the two panelists, is also a concept that has been defined by able-bodied people. According to Cyr, when people contemplate a poor quality of life, they immediately think of the possibility of being disabled from doing certain things, without ever considering the experiences and voices of those who are already disabled. This was something that became more apparent to able-bodied people when the pandemic hit, according to Cyr.

 

Cejas concurred. “There were so many different discussions about who should receive ICU-level services, rationing care, who should receive a ventilator,” she said. “Every time you look at it, if you look at someone who has any kind of disability, particularly those with intellectual and developmental disabilities, and particularly those people who might have more significant physical limitations, or maybe who are already using different kinds of technologies like ventilators, it seems like their lives are considered to be less valuable,” she said.

 

Indeed, the idea behind mask-wearing is to help protect the vulnerable, like people with disabilities, from COVID-19 exposure. This was especially true prior to the availability of a vaccine. However, those who oppose mask-wearing indeed do not seem to care, which speaks to Cejas’s point.

 

According to the panelists, even while studying to be a medical professional, ableism is at play, stunting progress when it comes to healthcare equity and discouraging and surprising people with disabilities.

 

“One of the products I’ve been working on more recently has been trying to get more disability content into our medical school curriculum, making sure that our students are learning how to take care of disabled patients,” said Cyr. “I was a little bit surprised that I got pushback early on when I tried to integrate that into our preclinical time. This is like inherently advanced content [according to the curriculum],” she added.

 

Cyr said the addition of such material would help negate stigma or ignorance and would be beneficial to both the disabled community and the medical community alike. With education comes the opportunity to improve conditions for all people, according to the two panelists.

 

Cyr said, for good reasons, one medical team she knew of didn’t want a specific patient standing, walking around, or trying to do things alone. “But this resulted in the patient being kept in their room, in their bed, or in the chair next to their bed pretty much all of the time for a while,” she said.

 

“When I brought up to the team later, ‘Has anyone asked the patient how much they’re upset about not being able to get up versus being stuck in their room? Maybe we could get a wheelchair and let them out a little?’ just that fact seemed to blow their minds,” she added.

 

According to data by disabilitycompendium.org, in The Bronx, there were 209,900 people with disabilities in 2018, making up 14.8 percent of the borough’s population. This was higher than all other New York City boroughs, where the rate in Manhattan was 11.5 percent, in Brooklyn, 10.2 percent, in Queens, 9.5 percent, and on Staten Island, 10 percent.

Aside from healthcare inequity, people with disabilities endure, of course the common obstacles every day when it comes to accessibility. The Bronx is home to several hospitals and one of the main complaints from residents is that the subways nearest the hospitals are not all accessible. As reported, the MTA has committed to making the following Bronx subway stations accessible, as part of its 2020-2024 Capital Plan: Wakefield-241st Street, Kingsbridge Road, 167th Street, Burnside Avenue, 3rd Avenue-138th Street, Van Cortlandt Park-242nd Street, Tremont Avenue, Parkchester, East 149th Street, Brook Avenue and Mosholu Parkway.

 

However, aside from elevators, not all subways, such as the Kingsbridge Road subway serving the D line, have seating on every platform, something which, in addition to elevators, would seem essential for people with disabilities. Norwood News recently queried this with the MTA. We were informed by a spokesperson that at Kingsbridge Road station, “as at many stations,” benches are placed to prioritize seating opportunities for the platform that serves the highest number of waiting customers “i.e. in the direction of peak travel.” An MTA official said at Kingsbridge Rd, this is on the southbound platform, where they said there are two benches.

 

The official said the addition of benches is done as needed based on community requests and reviews by station management and the MTA’s planning teams. Norwood News asked if there was not also peak travel on the northbound platform for passengers traveling/returning home in the opposite direction at different times during the day. We did not receive an immediate response.

 

Disability rights advocates like Bronx Independent Living Services (BILS) made some progress on the transportation front in June when a coalition of advocates reached a historic settlement with the State to make the NYC subway completely accessible to people who need stair-free access. Today, only 25 percent of stations (113 stations) have elevators or ramps that are usable by people with disabilities, which clearly affects their mobility.

 

Meanwhile, more progress was seen in Sept. 2021 when the advocacy group, Disability Rights Advocates, settled a lawsuit and in doing so guaranteed that blind individuals now have access to the State emergency mass notification system.

 

Since then, on July 26, on the 32nd anniversary of the Americans with Disabilities Act (ADA), Gov. Kathy Hochul signed a package of State bills into law relating to supported decision-making by people with intellectual, developmental, cognitive, and psychosocial disabilities, as well as legislation which establishes a public awareness campaign to combat the stigma and stereotyping of individuals with developmental disabilities.

 

In addition, a package of legislation was passed which replaces certain instances of the term “mentally retarded” with the term “developmentally disabled,” replaces certain references to “mentally retarded” or “mentally ill” persons with the term “individuals with a developmental disability,” and eliminates the State residency requirement for designated beneficiaries in the New York ABLE program.

The program allows New Yorkers with disabilities to save money in their own names without risking their Supplemental Security Income, Medicaid, and certain other means-based benefits.

 

Also on July 26, Mayor Eric Adams attended the Sapolin Accessibility Awards in Manhattan. “As one of the greatest civil rights laws in our nation, the Americans with Disabilities Act broke down barriers and opened doors for so many of our brothers and sisters,” the mayor said. “Every day, my administration fights for equality, dignity, and opportunity for all because this can’t be the greatest city in the world until everyone has an equal chance to contribute. The Sapolin Awards are about recognizing those who are working every day to make New York the greatest city in the world for people living with disabilities to live, work, and thrive. Now go on, follow your dreams.”

 

During his remarks, Adams noted that several of the students signed up for the Summer Youth Employment Program in 2022 included students with disabilities.

 

Meanwhile, in recognition of the ADA anniversary, Bronx Borough President Vanessa Gibson said, “I am proud to announce the reactivation of the Borough President’s Disability Advisory Council. It is important for our office to prioritize the important issues that matter to our residents living with disabilities while promoting inclusivity and equity.”

 

She added, “I look forward to working with our Advisory Council and advocates in developing a blueprint to support ADA compliance in our Borough’s infrastructure, eliminating barriers to equality, and connecting residents to accessible and critical resources.”

 

In June, Norwood News reported on the annual Trike-a-thon, held on May 24, in which children attending New York Institute for Special Education, located in Pelham Parkway, raised money in aid of St. Jude Children’s Research Hospital. Later, we also reported on a separate sports tournament held at the institute for older special education students which was held on June 2.

 

Finally, as also reported, INCLUDEnyc fosters positive futures and enhances the quality of life for young people with any disability from birth to age 26 and their families in New York City. The organization promotes access to educational, employment, and independent living opportunities for young people, and advocate with families for meaningful inclusion in the broader community.

 

For a list of upcoming workshops and events for both people with disabilities and their families, both online and in person, click here.