Eva-Elizabeth Chisholm, Mary Ellen Dingley
May 15, 2020
By Eva-Elizabeth Chisholm, Human Services Leader
with Mary Ellen Dingley, Communications and Outreach Coordinator
In any given L’Arche home, at the end of the day, you will see people coming together around the table. Dinner time is a sacred time at L’Arche, where we pause, reflect, and return to one another. Core members (adults with intellectual disabilities), assistants (those who support them), and often friends, family, and volunteers gather to eat, chat about their days, and at the end of the meal, pray as they pass around a candle.
The dinner table for L’Arche is a symbol of belonging. In many places, historically and currently, people with disabilities were segregated, left to eat and live alone. At L’Arche our relationships are at the core of who we are and we eat and pray together.
But now that has all changed.
The COVID-19 pandemic causes significant risk for people with disabilities and the group homes and residential service providers where they live. While L’Arche has a very different model than most group homes, using a communal, family-style model rather than a top down “provider-client” one, we share those risks. As new guidance continues to come down from local and national health care authorities our service team must respond with care, flexibility, and creativity. Right now that guidance includes no more dinners around the same table, no more gathering in a circle for prayer – everyone who can must remain 6 feet apart. Even in their own homes. For dinner time, people in the homes are getting creative: one house created a map, using measuring tape, to figure out how people could all be eating at card tables six feet apart but still in the same room.
Assistants are essential front line health workers and cannot fully social distance from core members. Providing direct support often includes helping with personal hygiene, medication, moving from place to place in the home, and other daily, necessary activities. Not only can we not be completely distant from each other in the homes but we also don’t want to completely disconnect. Everyone who comes to L’Arche, core members, assistants, and others, made the choice to be part of a community (and many assistants choose to live in the homes). We made the choice that we belong together. This choice leads us to be intentional in how we follow and respond to health guidelines, keeping ourselves both safe and connected.
As we follow this new guidance we are asking ourselves: what are practical ways we can retain our communal spirit? How do you socially distance inside a home, when you are both a family and a service provider? How do we support core members having choices and options in these situations? How do we follow the guidance in the most connected way possible while still being safe? The assistants, core members, and leaders in the homes have responded to every piece of guidance with creativity – creativity birthed out of a desire to be together, rather than merely support people in being alone. Our creativity is centered around the experiences of core members, who welcome each one of the assistants. Together we are resolute in maintaining the L’Arche spirit of mutual transformation.
Every day, assistants take their own temperature (they won’t work if it’s beyond a certain range), don a face mask, and are present with core members in a way that is both familiar and different. In non-pandemic times, face coverings aren’t standard for most support activities. Assistants don’t anticipate needing to don full protective gear – gowns, hair coverings, gloves, and eye protection are reserved for rare occasions. Now, face masks are part of the daily routine – an additional preventative step of protection. Because of disrupted supply chains around the world, L’Arche, like disability service providers around the country, has committed a significant amount of time to build up our PPE (personal protective equipment) store. Without these resources, our assistants and core members will be left in a more vulnerable position.
Core members support us by helping clean the homes, sorting supplies and groceries, and sharing their creativity, encouragement, honesty, and joy. They too are donning cloth masks on daily walks in the community – eating meals together via Zoom chats – and wondering when they will next be able to give someone a hug.
Around the country, people with disabilities are worried. They are worried about not having access to medical treatment, equipment, and support. Not only are people with disabilities often at greater risk in terms of underlying conditions, they are at greater risk of discrimination in the health care system. The pandemic does not cause this discrimination – it reveals it. Direct support professionals (who support people with disabilities) are also worried. They are worried about being able to pay their bills, about getting sick, about spreading germs to others, about being able to support others to the best of their abilities.
We’re not immune from worry at L’Arche GWDC nor distant from this national situation. The threat is serious and the challenges are many. But we are facing it together and even if we can’t return to each other around a dinner table, to hold hands, pass a candle, and pray, we remain connected. We chose this community, and as a community we will continue.