At home during the pandemic, she was the healthiest she'd been in years. Then she was called back to work.
One of Rachel Hinken's favorite after work things to do is get her keytar out and give private concerts at her Copiague, NY home. It doesn't matter that the only spectators present are their son Oliver (6) and their two pets are rabbits, Penny and Snowy, both 8 - limping interferes. Her gum-pink hair swings around as she describes it.
“I wanted to be a musician,” says Hinken. "But I couldn't. It's just too exhausting."
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Her impromptu shows are now much rarer than they were a year ago.
Hinken, 36, has lived with postural orthostatic tachycardia syndrome (POTS) for 12 years. In 2020, she was temporarily on leave from her position on a care program for older adults with Alzheimer's and dementia during the coronavirus pandemic. She continued to receive 10 hours of wages per week despite only completing one hour of virtual interaction with seniors, and also earned unemployment insurance.
For almost a year she didn't have to drive to work or walk much farther than the distance between the rooms - and as a result had more waking hours to spend with Oliver and her boyfriend Jonathan Rainone, Oliver's father.
Now that she's back at work, she's lucky enough to spend more than an hour or two with them in the late afternoon after Oliver got home from summer camp before crashing for the night.
"So many of my friends are in bands and they say, 'Hey, come over to this one!'" Says Hinken. "I just thought, 'I'm really sorry. I love you guys. You guys are great musicians. But it's just so hard.'"
The 13 months she spent home from work during the pandemic was some of the healthiest she has enjoyed in her adult life. After the full reopening of the program she works for, when she returns, like many with disabilities and chronic illnesses, the question arises: what does she value more, her income or her health?
If Limp leads you through all of their diagnoses and their meanings, it will take several minutes. POTS, a form of dysautonomy (or autonomic nervous system disorder), makes it difficult for a person's body to regulate its temperature, heart rate, blood pressure, or sweating while standing; Hyperadrenergic or "hypere" POTS, the form of limping, is accompanied by increased levels of stress hormones. POTS can also be accompanied by symptoms such as drowsiness, fatigue, headache, brain fog, blurred vision, tremors, nausea, and palpitations.
After her diagnosis in 2009, Hinken had to drop out of Community College, where she studied early childhood education. In the years that followed, she was diagnosed with two heart diseases: AVNRT, which results from an extra pathway in the heart, and mitral valve disease, in which a large valve does not work properly. Both of these can lead to fatigue and shortness of breath.
Conditions like that of Hinken make full-time employment difficult. A job at a retail chain - where Limp couldn't rest as needed, couldn't control the temperature of the surroundings, and couldn't carry a water bottle to counteract their tendency to sweat profusely - ended briefly.
Since 2019 she has been working 20 hours a week on five days as a program assistant in the senior care center. Every day she sat with older customers who listened to music; she danced with them, colored with them, held their hands. "I never want to lose this job," she says. "It's just so nice to have something that you can do and, like everyone else, feel like a productive member of society."
But in the short time she worked at the care center before the pandemic, Limping fell ill with strep, laryngitis, and bronchitis - in addition to a condition that already often left her feeling exhausted. "This is how you go to bed, you don't wake up rested, you are still tired," says Hinken.
Now with workers returning to personal work en masse in the United States, people with disabilities and chronic illnesses are seeing the opportunities that made life easier to disappear. Many feel frustrated and invisible as a result. Some stopped.
Being in Hinken's position - having a job and keeping it through the pandemic - is certainly a relatively happy place. Dara Baldwin, director of national policy for the Center for Disability Rights, points out that the unemployment rate among Americans with disabilities was initially higher than that of the rest of the adult population before skyrocketing for everyone in 2020 when asked about housing for workers with disabilities, she is always quick to point out that "they are usually privileged disabled people".
Still, the challenges are real and Limping's return to work was bittersweet. Initially, she and the centre's other program assistants were called back two days a week. Hinken was overjoyed to see the seniors she had personally missed - although she realized some of them were at a disadvantage during the year. "Some of them don't talk anymore than they did before the pandemic. Now they just wander around," she says.
Limping loved the easy schedule, and she began to dread returning to a full week at work. "I had all these days off in a row and got some rest from work and it was fine," she says.
It took her some time to find the courage to ask for permanent change. "I was very afraid. Like, 'What do I do if they tell me they can't take me in?' I would be stuck five days a week again, ”recalls Hinken. Would she stop and get disability insurance instead, as she had for years after her diagnosis? She hated not working. "So in my head I had a lot of thoughts."
Curt Decker, executive director of the National Disability Rights Network, says a dilemma like Hinken's resides over "reasonable accommodation," the central requirement of the Americans With Disabilities Act. It is up to every employer and employee, according to Decker, to work out an agreement on what arrangements are actually required to ensure that the employee can perform the essential functions of his work. In a case like Hinken, Decker says, "the employer has an opportunity to say, listen, I need you here to actually help these patients." But his hope, he says, is that the employer could also think of giving someone who can't work in person to more remote-friendly tasks like office administration or paperwork every day.
When Hinken finally asked for a new, reduced schedule, her employer offered her one: face-to-face work, three days a week. Limping accepted gratefully.
Reducing work, says Hinken, has helped her gain some control over her energy levels. And above all, she didn't get sick. Still, it's a compromise. Limping takes home $ 500 less a month than it did before the pandemic - $ 6,000 less a year. For them, that means removing services like DoorDash and Instacart from their budget, and sometimes adding in energy-draining tasks like cooking, shopping, and take-away.
Right now, the sacrifice seems to be worth it. However, Limping sometimes wishes that she didn't have to make it in the first place. "I don't like to ask for accommodation because I want to be treated like everyone else, as if I were a normal person," says Hinken. "However, my body doesn't treat me like everyone else."
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