Last Christmas, I had to confront a healthcare team at a local hospital who were lax and resistant in providing needed care to a core member. The core member went to the hospital for something minor, they ended up being in the care of the hospital for over 2 weeks (during Christmas!). As the stay dragged on, I needed to say, “Can I speak with a supervisor?” and “Where is the nurse manager?” Later, we contacted the ombudsman and regulators. I had to speak on behalf of the core member, and their family, to ensure that basic needs were being met, and to escalate the issues the core member encountered.
This is all too often the case for people with intellectual disabilities who enter our healthcare systems. L’Arche often finds ourselves being the voice of change in our systems. We see the impacts of systematic exclusion, and we navigate a system that isn’t able to see people.
The core member soon went home, and before they left nurses and doctors had wondered about my confrontation, and about the resilient spirit of the core member; their encounters had led them to learn about L’Arche. Through our stories, a social media post, and watching our videos, something clicked. One nurse said it helped her make sense of the core member’s frequent phone calls and nightly parade of various dinner guests; she reflected that we are like a family, and in that, the core member has a voice. She had made assumptions about the core member because of their intellectual disability, she hadn’t known their abilities or gifts, and the system didn’t have space and time for the voice of the core member.
You can imagine the fear that I have for the community at this time, as COVID numbers increase, healthcare resources are again being rationed, and the New York Times reports that people with intellectual disabilities and developmental disorders are three times more likely to die of Covid-19 than the general public. Health disparities are impacting the lives of people with intellectual disabilities across the world. L’Arche as a federation lives with this reality daily. The pandemic has brought this into focus for others to understand and listen to the experiences of people with intellectual disabilities.
We continue to plan, act and review our protocols, seek out the PPE, ensure that we have enough people to support our way of life, and to meet the changing needs COVID-19 brings each day, and each day acknowledging we are each getting older.
But I and L’Arche are not overwhelmed by this fear, rather we are empowered to live more fully into our mission, and be a voice and sign for change. In the hospital last Christmas, I maybe couldn’t have advocated so strongly for myself, but in community, we could.
The pandemic is teaching us something about the need of one another, it is highlighting our shared humanity.
The pandemic will leave a legacy. It will change the way we live for years to come. We can be quick to point out all the things that have closed, the things we can’t do anymore. I hope that L’Arche can remind us of the things that are important to keep, things to hold closely and celebrate more boldly:
Our interdependent lives, cherishing old and new relationships and sharing our voices to uphold the dignity of each person, creating and working toward a more human society.
If you want to support L’Arche GWDC during this time of need, considering donating to our Giving Tuesday Campaign!
Photo by Brian Taylor