September 28, 2016 — PLAN RI today launched a ten-month series of trainings funded by the John E. Fogarty Foundation. At the inaugural event in the series, Cathy Ludlum, a disabled-rights activist with spinal muscular atrophy and who facilitates her own Circle of Support, inspired a crowd of parents and potential facilitators by detailing how her network has helped shape her successful life.
An article in the “Communitas Est” newsletter contains the major take-aways from her presentation at the PLAN RI symposium. With her permission, we reprint it in part here:
I want to focus on five ways that relationships affect and enhance my day-to-day experience.
1. Emotional support. Even when no one is around, I feel cradled in the love of the people in my circle and my wider network. When I am facing a challenge, such as hiring new personal assistants or planning a trip, I feel vulnerable. Then I think about the people who believe in me and would help address any concerns. Whether I choose to reach out to them or not, just knowing they are there makes me feel more capable of conquering the problem.
2. Practical support. Several times, I have lost nearly all of my personal assistants in a tsunami of illnesses and family crises. If I did not have so many caring and wonderful friends, I probably would have ended up in a facility. But when I have called and said, “There is no one to put me to bed tonight, tomorrow night, or all this week, and no one to get me up either,” people have come over to help. I have been humbled by their commitment, and blessed by their generosity.
3. Medical advocacy. While medical personnel mean well, they often lack experience with people who have disabilities. This makes medical environments, and especially hospitals, particularly frightening. Whenever I am facing a health challenge, I rely on Faith, Melissa, and Debbie for advice and advocacy. If hospitalization is required, my circle and wider network are made aware so people can stay overnight and/or provide advocacy and support during the day. Several situations that might have resulted in tragedy were turned around by the involvement of my friends.
4. Support through life’s changes. As I grow older, my body changes, as does my support network. When I lost some abilities that had made it possible for me to stay by myself, members of my circle and wider community came to be with me. When I needed to reduce my formal support hours for financial reasons, they were there. And when I found new and creative ways to be alone again, they supported my decision. Half of my circle members have been with me for 30 years, and others have come and gone as their own lives have changed. While my mother’s death left a hole that no one else can fill, my friends have stepped in to provide comfort, stability, and at times physical support as she once did.
5. Reminding to have fun! I work very hard coordinating personal assistants; tackling household, technology, and health issues; and providing paid and unpaid consulting services to numerous individuals and groups. Often I sit down at my computer and don’t look up for hours. Then Sharon will call and ask, “What night is good for a video?” Pat will email, “Want to go somewhere?” Or Julie will ask, “What are you doing for yourself today?” These breaks are more than nice diversions. They make it possible to keep going.
Relationships do not happen by themselves. My friends and I actively nurture our connections through emails, phone calls, visits, parties, and sometimes field trips. When things are hard, I convene a circle meeting. When I am too overwhelmed to reach out, Debbie will email or call people for me. Most of the time my circle is able to come up with solutions to the issue. If the issue has no solution, at least we have each other as we slog through it.