Sunday, December 16, 2012 | Categories: Episodes
From Calgary, this is Patti Morris' essay, Befriending Sherri.
Looking back, I can't clearly remember what words drew me to that place. Nor how that small ad in a community weekly provided enough intrigue to tempt a 14-year old to commit one evening per week of a languid summer to an eight-week training program.
I do remember the bus ride; I remember the shaky stairs to the tiny office that smelled of papers long-gone. I remember the small group of adults who looked surprised to see me join them. I remember the language, the ideas, the challenge. Mostly, I remember the sense of it - the striking, gut-wrenching reality.
The group was called Citizen Advocacy, founded by a man named Wolf Wolfensburger, a radical thinker in the world of disability. After visiting institutions in the U.S., he realized that there were many among us who had literally no one in their corner, no one who cared for them - unless they were paid to do it. Wolf's simple and yet profound idea was that everyone needs at least one faithful friend who will stand by them forever. He formed a group - called Citizen Advocacy - to encourage those connections.
At fourteen, I had lived a pretty privileged, but ordinary life; I had parents who were kind and community-minded but not social activists; I had a limited sense of the experience of others in the world. So the existence of this most profound aloneness was news to me. Something about it touched me deeply, made me want to do what I could to ensure everyone had someone. My parents and my family were supportive, but quizzical.
After training, we were told, you'll meet the person you've been matched with. You will make a lifelong commitment to that person, whose interests you will come to represent, as if they were your own. I remember the very real fear those words instilled. And I clearly remember my first encounter with Sherri.
I was told to meet Sherri at her home, a group home, where she lived with seven other adults with developmental disabilities, all in wheelchairs. I was told that she had spastic, bilateral quadriplegia cerebral palsy and that she had started her life in an institution for babies, later moving to a large provincial institution, and then to a sanitarium in our city. Now, she was living in a group home. She was 18 and I was 14. My mom drove me to the group home. I was scared.
Sherri was like no one I had ever met. She sat slumped in a wheelchair, her hands knotted and contractured. She wore thick glasses that were held to her head with an elastic band. Her head bobbed and she seemed disinterested and sleepy, and at times, angry. She spoke little and when she did her words were loud and long and moaning. Sometimes she bellowed and grew red in the face. I didn't understand her. She tried with growing volume and frustration to make herself understood.
Dutifully, I returned every two weeks, sitting in her living room, or her bedroom, at times, pushing her wheelchair in the neighborhood. Few words were spoken. Sherri continued to ricochet between sleepiness and fits of unexplainable rage. The Citizen Advocacy Coordinator checked in. I told her that I wasn't sure that this was going to work, I wasn't sure that Sherri liked me. I wasn't sure she always knew I was there. She assured me that Sherri needed time to trust, she needed to know that I would be coming back. She told me that everyone in her life had left her. Her parents had never known her and were likely coached to give her up. Staff came into her life and left. The anger was her only way to express the hurt, powerlessness, and fear she no doubt felt. She explained that Sherri's medication could be causing the sleepiness.
Something - I honestly don't know what - made me stay with Sherri. Over time, small moments of comfort filled in the gaps. She spoke more often, and I began to understand at times. I attended meetings about her care, the programs she was involved in. She met my family; she came to a family dinner. She met my circle of friends, who over time came to embrace Sherri. Our visits moved from her home and neighborhood, to new destinations. We went to movies, to dinner. We went shopping. When she found a boyfriend, we double-dated.
And then one day, she asked for my help to move out, to a place of her own. I was dumbfounded. She couldn't speak very well, couldn't care for herself, she didn't work, couldn't read, and wasn't able to count money. I was barely an adult myself, and in my mind she was completely vulnerable, in need of care and protection. But, she insisted. She persisted. And so we dreamed together of a plan and we challenged the system to provide money directly to her rather than to the group home, to hire her own caregivers. Over time, she moved into her own apartment, with a roommate.
Like our first visit, it was imperfect. I received urgent calls when they ran out of toilet paper, and was called when the neighbour in the adjoining apartment was upset by Sherri's screaming. I was called the day of the flood, when her roommate had forgotten to turn off the tap. I arrived to find the parquet flooring buckled and Sherri teary and distraught. I wondered if this would ever work; if I could keep it up.
Over time, I became a mother, and Sherri became an "aunt". She decided she hated roommates and moved into a new apartment on her own. She got birds and wonderful staff. Things settled. We attended family weddings, holiday celebrations, and funerals together. She quit her day program and decided to create her own meaningful days: gardening, helping with laundry, doing the things she loved to do. She took pride in her place and understood her valued status in our now, shared family.
When my dad became sick, it was Sherri who reached out, calling each day to check in, offering me her words of comfort and support.
For many years I had believed - unconsciously at least - that I was "doing something" for Sherri. As my dad's health declined, I was powerfully reminded by those loving calls from Sherri, that we were friends, doing something, as friends do, for each other.