Disability should not mean invisibility

Jennifer E. Engen

A fourth-year student at the University of Massachusetts Amherst, her life now is not what she dreamed her freshman year.

“I was not coming in as a disabled person,” she says. “My biggest stressors were figuring out how do I make friends, how do you write an e-mail to professors. Now, in my senior year, I am struggling with navigating accessibility and figuring out how to function on this campus.”

Everything changed sophomore year. After a long run that October, she had a headache. Then came congestion. She thought it was just a cold. But she was moving slower. Her body felt weak. And one day, on her way to the dining hall to get breakfast, her legs could not hold her.

“I just kind of dropped to the ground,” she remembers. “I was like, ‘This is strange.’ I have a passing out condition. Reflex syncope. But my legs just gave out and I was sitting on the pavement watching all the students like, ‘This is weird but I’ll be fine.’ ”

A friend got a chair from class, one with wheels, and pushed her back to her dorm. Campus police stopped her, but not to help. As she explained what was going on, the officer told her taking property from a federal building is considered a felony.

A young Black girl unable to physically walk was criminalized.

Quickly, Pol’s symptoms worsened. With reflex syncope, her body is unable to appropriately regulate her heart rate and blood pressure, leading to dizziness, nausea, and a loss of consciousness. But new conditions set in. For the last two years, she’s been in debilitating pain and suffers from extreme fatigue.

Now, she uses a wheelchair full time.

Though doctors have yet to find the cause, Pol is determined to raise disability awareness.

The first week of school this year, as remote learning ended, she was only able to attend one of her classes due to accessibility issues. And though the problem has since been fixed, early on this semester, she was unable to reach food in the cafeteria. When you can’t eat or access class, you can’t perform your best as a student.

There is a reliable campus van service and many automatic doors, but if an automatic door opener gets wet from the rain, it won’t open. For this reason, she’s been stuck in a storm at least once. There are inaccessible bathroom stalls. Recently, that meant using a men’s restroom in the library. And the curb cuts and sidewalks aren’t smooth enough for her wheelchair.

A campus spokesperson, Edward Blaguszewski, says the university has been making progress to improve the issues and is committed to becoming more accessible.

Over the last 21 years the school has invested about $8 million a year in accessibility. That funding has led to some progress, including the opening of the accessible Worcester Dining Commons and an Integrated Learning Center with over 2,000 accessible seats. The school is also trying to fill disability services positions, which have been understaffed due to the pandemic and a since-lifted hiring freeze.

But to upgrade the 100 buildings identified as top priorities, Blaguszewski says will cost more than $350 million. There’s a long way to go.

Pol says part of the issue is truly understanding the complexity of the obstacles students face. Aligning with student groups like The Alliance Against Ableism and Disability Culture Club has helped her build a support system and expand her advocacy.

They are hoping the campus will fund a Disability Culture Center in the library so they have a gathering space. Pol and other students started a petition to hold the campus accountable for creating more accessibility.

“One of the biggest things that I realized when my disability first started is there was just so much that I had to learn. I had no idea what barriers were even issues. The only way I became aware was by becoming disabled,” Pol says

And if most of us don’t grasp disability until we experience it ourselves or through loved ones, society is not going to change.

Pol turned to TikTok. She first used her account to raise funds for a service dog. But as her confidence grew, and the need to raise disability visibility became more apparent, she wanted to do more to make a difference.

“I realized I could do some good with this platform that I am being gifted,” Pol says. “I can give back to the community that is helping me. And there’s just so much that I want to see changed and nothing will change if people don’t know that it needs to change.”

With her account, @immarollwithit, she uses dance, joy, and wit to dispel myths about disabled persons and to advocate, too. Dance has been instrumental in lifting her spirit and spreading her message.

“Honestly, dance has been a really important and powerful thing for me and living with my disability,” she says. “When I first started using my wheelchair, I wanted to dance but I couldn’t pick up my legs and make the shapes that I wanted. I couldn’t take up the space that I wanted to.”

But she realized she could adapt the dances on TikTok to her dance style while also creating meaningful messaging around disability awareness.

“I can do a lot more than I thought I could,” says Pol, who has amassed over 375,000 followers and was seen in PrettyLittleThing’s runway show at New York Fashion Week this year.

“I keep learning more and more different ways to move and enjoy it. There’s an idea of what disability looks like, but there’s no box of disability, and if society doesn’t see you as disabled, they won’t respect your support needs,” she says.

There’s an assumption that if you are in a wheelchair, you must be paralyzed. Trolls have claimed she is not disabled because her legs move when she dances in her chair. But disabilities are expansive. They are mental. They are physical. There is a spectrum.

On a stroll from Brett Hall, her dorm, to a nearby park, the sun is shining and Pol is smiling. She loves being in nature. But the curb cuts are steep, making it hard for even her power chair. We sit and talk and she teaches me a dance.

And then, as we start to leave, the gravel grabs her wheels and the chair can’t gain enough momentum to push forward.

She starts to apologize, repeatedly. She did nothing wrong. She’s existing. Two colleagues and I band together and lift her. These are the moments people don’t think about unless they are in them.

And it doesn’t just happen at UMass Amherst. It’s been over 30 years since the Americans with Disabilities Act and a federal judge just approved a settlement in which the City of Boston will ensure all curb ramps meet ADA specifications by installing or upgrading over 1,500 a year. Of the city’s 23,000 curb ramps, less than half are acceptable.

Heather Watkins, a Boston disability rights activist, was born with muscular dystrophy. She says it’s important that we recognize disability rights as civil rights, as human rights.

“We are always seen as a burden or like your needs are extra,” Watkins says. “It’s about equity and being able to access the things our peers and counterparts can access.”

Sometimes Watkins uses a manual wheelchair. Other times she uses a cane. What she’s noticed as a Black disabled woman is people don’t understand disability as an identity. They don’t always see disabled folks as part of the greater community.

We don’t learn about disabilities or people with them, Watkins says. Harriet Tubman, Sojourner Truth, and Fannie Lou Hamer all had disabilities. We learn about the history they made, but wash over their disabilities.

“Disability is an identity marker and not an indictment. Rather than trying to distance yourself from disability, see it as part of culture and history,” Watkins says. “You want people to be able to participate in their own communities. I am not just a disabled person. I am a parent. I am a person in need of care and a caregiver and community-builder.”

Pol also wants to see a more inclusive society. She’s had to have friends carry her when parking spaces are too restrictive or places aren’t wide enough or smooth enough for her chair.

People think a ramp and a curb cut are enough. That’s just the start. But as she fights for equity, she also fights for her joy.

“I’m a Black disabled woman and the world has not been kind to all three aspects of my identity in very strong ways,” Pol says. “I feel that. I see that and I live it each day. But I don’t want that to be my story. I want my happiness to be the biggest thing about me.”

Living with chronic pain, she has learned to navigate her way to feeling good. Access should not be a barrier to being joyful.

If everyone doesn’t have access to community, to happily and healthily live life in the places they call home, we aren’t building communities. We’re complicit in collective hurdles.


Jeneé Osterheldt can be reached at [email protected] and on Twitter @sincerelyjenee.


https://www.bostonglobe.com/2021/12/08/metro/disability-should-not-mean-invisibility/

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