Under Phase 1B of the state’s guidelines, Marylanders with intellectual or developmental disabilities are eligible for the COVID-19 vaccine. But disability rights advocates say the state is not doing enough to prioritize them.
“The ableism of the bureaucracy is really keeping a lot of people like us out,” said Tyler Vile, a Baltimore City advocate who has cerebral palsy, which puts her at higher risk of dying from COVID-19.
For people with disabilities, there are many barriers throughout the vaccination process, from making an appointment to getting the shot.
Sheryl Grossman, a Baltimore County advocate, has a developmental disability due to a rare genetic condition called Bloom Syndrome. She also has COPD and autoimmune diabetes, all of which put her at higher risk of dying from COVID-19.
“There's been an acknowledgement by the federal government and the state that people with our conditions are more likely to die from COVID,” Grossman said. “And yet they keep telling us that oh, yeah, it's limited supply, but we'll get to you eventually, while thousands more of us die.
Grossman, 45, has been in disability rights advocacy for more than 25 years.
“We've been told all our lives that we're not worthy of this,” Grossman said. “We're fighting this stigma all the time.”
Janice Jackson, leader of Women Embracing Abilities Now, a Baltimore-based nonprofit for women with disabilities, said about 90% of her group has not been vaccinated.
Jackson, 61, has used a wheelchair since she was partially paralyzed after being hit by a car when she was 24.
“It seems like we're always an afterthought,” Jackson said. “We're never in the planning stages.”
Among individuals with intellectual and developmental disabilities, the state health department said it prioritizes those who live in congregate or independent living facilities.
But Jackson said this reflects a misconception of how most people with disabilities live.
“The mindset of most people is that people with disabilities don't have independent lives, they’re not in the community living independently,” said Jackson, who is also board chair of the IMAGE Center, a non profit that helps people with disabilities live independently. “It's an attitudinal barrier that we've been trying to chip away for so long.”
Cheryl Gottlieb, a 35 year old advocate in Baltimore County with cerebral palsy, said about 75% of people with disabilities in the U.S. live independently. Gottlieb lives alone, but receives occasional help.
“My living situation, our living situation, is so far out of the realm of what the people in power are conceptualizing of how disabled people live that we just aren’t even considered at all,” she said.
Baltimore City advocate Sammi Hampton has a heart condition and an autoimmune disorder. For over a month, they tried to make an appointment, but many sites would not recognize their disabilities.
“It’s incredibly confusing, and it's a disaster trying to navigate it,” Hampton said.
Baltimore County advocate Grossman said navigating multiple websites is stressful and that the state should have a centralized website for all vaccine appointments, an idea that Gov. Larry Hogan and Acting State Health Secretary Dennis Schrader have repeatedly pushed against.
Niesha McCoy, a student at Morgan State University with spina bifida, has tried for weeks but still has not received an appointment.
“I'm not gonna put it on the local health departments. They're doing their best,” McCoy said. “It’s the state that has to get their stuff together...the state needs to be more transparent.”
Jackson said websites for appointments are not user friendly, particularly for those who are visually impaired or have certain intellectual disabilities.
“The format in which they provided this information has excluded a lot of people with different types of disabilities,” Jackson said.
After trying constantly since January, Grossman got a confirmation email for an appointment in late February. She said she probably got that appointment only because she has an extensive medical network.
Grossman was assigned to the mass vaccination site at Six Flags America in Prince George’s County. Later, she found out that the site is drive-thru.
“The only reason I knew that is through going through this extensive network again, and multiple phone calls and emails everywhere,” Grossman said.
Grossman said she was lucky: she can drive and has her own car. She then had another concern: due to medical reasons, she cannot get shots in her arms.
“There was no public information as to whether they had the syringe,” Grossman said. “It's a different syringe that's used in the leg.
She went to the site, not knowing if she would be able to get her first shot. She did, then noted that there wasn’t a thorough identification process.
“They never asked for photo ID,” she said. “They just sort of asked who I was and what my address was. And that was it.”
She said that can make it easier for ineligible residents to jump the line. Still, Grossman added that it could be problematic to have to prove eligibility at a site. Getting documentation to prove a disability is already a complicated process.
Jackson said a lot of medical providers don’t understand their needs.
“People with disabilities a lot of times forgo needed medical help because of what they have to face just to get into an office, just to get an appointment,” Jackson said.
Cara Liebowitz, a 28 year old advocate living in Montgomery County, asked a physician to write a note indicating she had cerebral palsy, a developmental disability that made her eligible for the vaccination under Phase 1B.
Instead, the physician wrote that she qualified as someone aged 16 to 64 with an underlying health condition.
“Which is not what I asked for, and not the same thing,” Liebowitz said. “If they had been really strict about it, they could have said, ‘oh well, that places you into Phase 2. Because that’s Phase 2.’”
Maryland is in Phase 1C.
During the weeks she tried to get an appointment, Liebowitz, who uses a wheelchair, worried about whether she could even get to a vaccination site.
She can walk short distances, but she cannot drive. If she ended up at a location too far to walk to, she would have to get a ride or public transportation and risk exposing herself to COVID.
“It's a constant battle,” she said. “I'm going back and forth with myself trying to decide how far am I willing to go for a vaccine, how much risk do I want to put myself at.”
Later, Liebowitz got her first dose at a Giant in Silver Spring within walking distance. Someone got multiple appointments and transferred one to her.
“I want to emphasize that I got an appointment by sheer dumb luck,” she said. “Someone knew I was looking, knew I wanted to go to Silver Spring and the Giant has the capacity to transfer appointments. I was trying for weeks, and I didn't get anything.”
McCoy, a Morgan State student with spina bifida, uses a power chair. But her chair is broken; even if she does get an appointment, it will be difficult for her to get to a site.
“It’s a hurdle just getting around,” McCoy said. “I can’t really go anywhere.”
Baltimore County advocate Gottlieb had to get a ride for her first dose. She has a power wheelchair that weighs 313 lbs, which means it won’t fit in most cars.
Eventually Gottlieb, who is able to walk short distances with a walker, got a ride without her chair. Then when she got to the Maryland State Fairgrounds, she found a few wheelchairs available.
“A guy very politely asked me if I needed to use one, he would have pushed me where I needed to go,” she said. “The thing is though, there is nowhere that had been advertised, that these sorts of things are available there.”
Gottlieb said if she couldn’t walk at all, she might not have gone to the site.
In the end, Gottlieb said it’s not enough that she got her first dose. There are too many others with disabilities who haven’t gotten vaccinated.
“It’s really hard to realize that people don’t care if you’re dead,” she said.
For Baltimore City advocate Tyler Vile, the process is a continuation of the ableism she’s experienced long before the pandemic.
"For us to get a vaccination, is not necessarily for us to go ‘back to normal,’” Vile said. “It's for us to continue existing in this world.”
As the pandemic continues, Sammi Hampton hopes other Marylanders with disabilities will speak up, and that those in power will listen.
“Bring us to the table, and know that no one is disposable,” Hampton said.
