By Bill Gaventa
Years ago, in my supervisory education in CPE, I had a middle-aged student who was a wonderfully kind and gentle man. He was seeking to be a better pastor, but he had a tendency to avoid intense feelings of grief or loss.
“How do you see your role?” I asked him one day. He thought for a minute and said, “Bringing comfort to patients and families.”
My response wasn’t original, but it fit. “Our pastoral call might be to help people mourn,” I said, “with the trust and belief they will be comforted.”
People with intellectual and developmental disabilities live in a virtual sea of grief and loss, but far too often, their need to mourn is not recognized or honored. Those losses can be the ones we all face: parents or family members, pets, jobs. But if they live in some form of residential services, they may also lose connections with the circle of relationships in which they grew up as well as facing a steady turnover of staff who work with them. But where do they get a chance to talk about it?
Old beliefs and assumptions change slowly. One is that people with intellectual and developmental disabilities will not feel grief like other people do. The quality of their lives, however, is directly related to the quality and quantity of their relationships. Many are more objectively and honestly dependent on others, so a loss of a relative, a trusted caregiver, or friend leaves a big hole that is not easily filled by work or diverted by multiple other relationships.
A second misguided assumption has been that their intellectual disability would make it hard for them to understand death (as if any of us really do so easily) or what was happening at a funeral. That often led to a third, assuming it would be best for them not to go to the funeral. Then one ends up in the land of what Ken Doka so rightly calls “disenfranchised grief,” or grief that is not recognized, not voiced, and has no place to go.
In New Jersey, my CPE students were assigned as chaplains to community-based agencies. At one, a new man in their residential and day programs became a real problem because of his anger and outbursts, incidents that led to holes in walls, and more. He had an intellectual disability, but had come from a psychiatric hospital, where he ended up after his mother died. Institutions still become the place of last resort in an emergency when waiting lists for community services are maddeningly long.
The staff began to believe that their only resort was to send him back to the institution. But the CPE chaplain said, “Let me talk with him.” She found out that when his mother died, shortly before Thanksgiving almost a year ago, he had not been able to attend the funeral. Nor had he been able to visit the cemetery. Thanksgiving was coming up again soon, his favorite holiday.
So, she asked, “Would you like to have a memorial service for your mother? I can help you do it.” They planned it together, built a memory box, had a memorial ceremony in the home where he had lived, and afterwards, fed the guests with macaroni and cheese that they made together, his favorite dish of his mother’s. As our unit concluded, his behavioral outbursts had gone down markedly.
The paradox here is that the fear of a child or adult with an intellectual disability “acting out” at a wake or funeral has often been what kept them from attending. As clergy and chaplains, we all have stories of people “acting out” their grief in ways that may be non-typical. Yet their emotions and feelings needed an outlet somewhere if they were not recognized or honored. In every faith and cultural practice around death, grieving and mourning is a way of acting out our grief. They are emotional, behavioral, and religious habits and practices that have evolved over decades if not centuries.
Thus, the question is not whether someone will act out, but how? People with intellectual and developmental disabilities have the capacity to learn. If they can ask plenty of questions, and be accompanied by someone they trust, the very act of participation in communal mourning is just as important to them as to anyone else. Give people choices about what they want to do. Creative strategies like visiting a wake before general visiting hours, or the setting for a funeral, will help people prepare. But think of the other participatory ways of doing grief: sending flowers, cards, visiting a cemetery, memory books, and more.
This area of grief and loss has finally gotten some research and practice attention in the last decade. There are now some excellent resources, including:
- A semi-curated bibliography of written and web resources available from NACC with the archived webinar I led in March of 2023. One of my favorites are the Books Beyond Words, adult social story books that illustrate processes of grief, loss, and end of life, among other human experiences, that can be used in talking with adults with intellectual and developmental disabilities.
- Websites in Australia, Canada, the UK and Ireland, some with excellent archived webinars.
- A new website focused on grief and loss for autistic adults, autismandgrief.org,
with portals for adults, families, and professional caregivers, including clergy, and a number of short video stories.
Just like anyone else, people with intellectual and developmental disabilities will come through our hospitals and healthcare services at critical times in their lives, often with heightened fears and negative histories about hospitals. Be on the lookout for them. Your respectful and guiding presence for them, the staff they work with, the clergy they know, and anyone else can make a huge difference – simply by taking their experiences of loss and grief seriously. Find ways to help people be part of the mourning, and trust that the comfort will come.
Bill Gaventa is the founder and emeritus director of the Institute on Theology and Disability. This article is based on a webinar that he presented to the NACC on March 16, 2023.
