Don’t Forget DC Residents with Disabilities
The pandemic poses special challenges for a unique Adams Morgan home and its broader community
Like many of us, sheltering in place makes Eileen Schofield feel “kinda safe” and sometimes “a little sad.” She isn’t able to leave the house to go to her jobs or volunteer work.
Unlike many of us, Eileen can’t even sit next to her roommates. As most DC residents navigate the ongoing stay-at-home order, sheltering in place at her house looks different than most. That’s because Eileen’s house is a group home that supports people with intellectual disabilities.
I’m a communications coordinator at L’Arche Greater Washington, DC, where Eileen lives. L’Arche can be hard for some of us metrics-driven, “can-it-scale” folks to wrap our heads around. It’s inclusion lived out in a way I’ve never seen before. At L’Arche, we strive not to separate people with and people without disabilities. To write this article, and explain what we do, I’ve had to draw more distinctions than I normally would.
L’Arche is an intentional community of people with and without intellectual disabilities. It is also a residential service provider for adults with intellectual disabilities, who are called “core members,” as they are at the core of the community.
This L’Arche community started in Adams Morgan in 1983 — around the time Forest Haven Asylum, a DC institution where an untold number of people were abused and even died, was in the process of closing. L’Arche GWDC welcomed some of the former residents as members of its community.
Now a new crisis is confronting our community. As the novel coronavirus sweeps across the globe, people with intellectual disabilities are at high risk for fatal infection. Core members at L’Arche are a vulnerable population and if they become sick and are rushed to the hospital, they might not receive a ventilator because they have a disability. How do we stay safe and sane during this time?
What It’s Like to Live at L’Arche — During a Pandemic
As a residential service provider, L’Arche provides housing, food, transportation, and daily support to core members. We model our service provision on our larger mission of dismantling the systems and culture that often keep people with disabilities undervalued and isolated. This mission is seen in every aspect of daily life. House meetings make space for us to communicate in different ways — verbally, non-verbally, in Spanish or English, sometimes through images or movement. Core members take on leadership roles to plan events, support fundraising, and make decisions in their homes.
When people who have worked at other facilities for people with disabilities come to L’Arche they are shocked — “it’s like a home” they often say. “It is a home,” we gently remind them.
As a licensed service provider, L’Arche is legally required to follow local and federal health guidelines, which right now includes social distancing in the homes, wearing masks in the house, rarely leaving, and near constant cleaning and sanitizing.
These regulations were not created with the smaller L’Arche homes in mind, nor the L’Arche model of family-style daily life or having live-in staff. While important, they leave us in a difficult situation. Core members, who prior to L’Arche often faced isolation, are now not only isolated from the outside world due to the pandemic, but are even physically isolated from each other within their own homes. If you live with other people, think about what it would be like to try to stay six feet away from your roommates or family. Needless to say, it’s not easy.
L’Arche homes normally do family-style dinners, with assistants, core members, and often a handful of guests and friends gathered around the table. Now people are measuring out six feet apart in their dining rooms, setting up card tables, and raising their voices to have dinner time conversation.
For Laura Heiman, an assistant — a L’Arche staff member who supports core members (also known as a direct support professional) — social distancing in her own house is one of the most challenging parts of this quarantine. Logistically, it’s tough, but it’s also emotionally difficult. “It’s really hard to know that these people, who are basically your family…you’re still not able to be near them or give them a hug.” As frontline health care workers, assistants’ daily work includes everything from administering medication to helping plan birthday parties, from supporting teeth brushing to cooking dinner.
People with intellectual disabilities are less likely to live in institutions in the past few decades. More of them have the opportunity to live freely in the community. But coronavirus has revealed the ongoing discrimination in health care systems and in how we value — or don’t value — the lives of people with disabilities. People with disabilities, many of whom have underlying conditions which put them at a greater risk for serious infection if they get COVID-19, are worried about being denied access to medical treatment, equipment, and support. Direct support professionals (who support people with intellectual disabilities) are also worried. They are worried about being able to pay their bills, getting sick, spreading germs to others, and being able to support others to the best of their abilities. Meanwhile, all the emergency funding the government freed up for coronavirus related relief? It took months of advocacy to get the promise of aid to Medicaid-funded disability service providers who support people with intellectual disabilities.
Eva-Elizabeth Chisholm, Human Services Leader at L’Arche GWDC said that the disability community and direct support professionals were “overlooked in the initial planning and response around coronavirus.” They had to “really fight” for support professionals to be recognized as essential workers, she explained.
Ian Paregol, Executive Director of the DC Coalition of Disability Service Providers, is very aware of the risks to the disability community: “We know the data that the District’s collecting shows that that somebody with a disability is significantly more likely to have a bad outcome from COVID.” Paregol explained that the Coalition’s advocacy has been able to help direct support professionals like Laura be tested for COVID-19 as essential health care workers. Even with these gains, he worries about the disability community here. “I really do sense that the disability community does not have a very strong voice with elected officials. They’re considered sometimes after the fact.”
Community Living in a Pandemic
Woven throughout all of the guidelines and the distancing and the new routines at L’Arche is the harsh reality that the pandemic is limiting our choices. Historically, people with intellectual disabilities have had very few choices — not being able to choose where to go, what to eat, or even what to wear. The coronavirus, and the accompanying lack of testing and discrimination in the medical system against people with disabilities, has highlighted the way many people with intellectual disabilities aren’t able to exercise their personal agency.
L’Arche, and other homes like it, were founded to give agency and community to people with intellectual disabilities. Core members at L’Arche usually go to work or day programs (centers with support and activities) of their choice during the day. Now those are closed and assistants are working overtime to support core members for an extra 6 hours every day. Assistants are tired. Core members are sometimes struggling.
I called to chat with some core members to see how they are experiencing quarantine. Debora Green has been keeping her home from boredom with ideas like celebrating Christmas in April and creating an at home “restaurant” in a spare bedroom. She’s also been drawing and writing a lot (she writes creative micro-fiction). Joseph Butler misses going out but calling his brother keeps his spirits up.
Michael Schaff is a founding member of L’Arche — he’s been a core member for over 35 years and is a great community leader and historian. He said he misses his day program. He watches television, has phone calls, and is reading a book about President Hoover. He goes out “very rarely” to stay safe. He’s looking forward to trips and a big party at his day program when they all return.
Rachel Shrock, who has been an assistant at L’Arche for the last three years, explained that at L’Arche we are all about offering support to core members to do what they want to do. If an assistant is supporting a specific core member that core member chooses how they spend their day. Now, with coronavirus removing the choice of going to a favorite coffee shop (closed), attending a friend’s wedding (canceled), or even sharing a hug (waves only), many core members’ choices aren’t available. “I think we’re saying no to more things and that has been hard…” says Shrock. “Because we believe in people’s choice and want to respect choice so much it feels really strange to do that.”
Shrock came to L’Arche because she was looking for community. “It just felt like home immediately,” she said. She lived in a L’Arche home for about 2 and half years and coincidentally moved to her own apartment on the day that new COVID-19 precautions began. “At the beginning when we were first taking precautions I had a lot of anxiety about giving support to a very vulnerable population,” she said. “It’s a really scary time to be giving support to folks. I feel like now some of that has normalized a bit.”
Charles Wood, a live-out assistant, said that “the hardest part of my job is fighting the unknown…” He explained he is always “making sure that I’m just conscious of how we all move for safety and transmission — Whether it be in the community or in the home.”
As DC considers plans to re-open, L’Arche knows that it won’t be opening its doors too soon. We’ll keep our office closed and stay inside our homes until it’s absolutely clear the danger has subsided. As disability service providers seek to stay safe, Paregol is worried that generally there is “not a lot of consideration about what the disability community needs” for re-opening to be safe for all District residents.
L’Arche is facing shelter-in-place with no quick end in sight, and a huge amount of upheaval for our small community and vulnerable population. But Shrock reminded me that being part of L’Arche is a commitment: “we are really willing to make it work no matter what.” As leaders in L’Arche often say, “we belong together.”
I asked Schofield if there is anything else people should know about L’Arche. “Come and visit!” she said. But not right now — right now, she reminds us, everyone should stay at home “to keep their bodies safe.”
When I asked Butler, another core member in DC, how quarantine made him feel, he said “We’ll get there.”
We’ll get there, DC. But we must get there together, without leaving people with disabilities behind.
