The story of my sisters is a story filled with love, hope, sadness, loss, humor, and lots and lots of music. My mother had six children under the age of nine. She and my father loved us all, but with three of those children profoundly mentally retarded and severely handicapped with cerebral palsy, my mother needed a lot of help. My parents had to make a heart breaking decision to put my two youngest sisters, Teresa and Cathy, in foster care, while keeping my older sister, Regina, at home. I grew up with Gina and remember my mother saying that my sisters were angels and that they would go straight to heaven when they died, while the rest of us would spend a lot of time in Purgatory paying for our sins.
In 1960, my three sisters went to Cambridge State School and Hospital. I was nine years old. Our family would visit my sisters at Cambridge once a month and take them for rides in the country side and sing songs for a couple of hours. That instilled in them and the rest of us kids a love for music. To this day my older, “normal” sister, brother and I visit my sisters at Furness House, a Phoenix residence, every two weeks and have a hootenanny. They love it and Gina sings along. She knows all the words to every song, yet to a stranger, they’d never understand a word she says or sings. The other two sisters don’t speak or sing. They rock back and forth and smile. Cathy might hum a few bars once in a while and Teresa sometimes makes screeching, excitement sounds. Communication doesn’t exist with the two younger ones and I often wonder what they think. I wonder if they have a concept of family. Gina would come home for a weekend visit about once every couple of months while she was at Cambridge. Gina definitely knows “family” and misses my parents terribly since their deaths in 2008 and 2009. Her vocabulary consists mostly of “Daddy,” “Mommy,” and “two weeks” referring to our next visit.
My sisters had a rough time at Cambridge. My parents worked to protect them and advocate for them and were heavily involved with ARC which was then known as the Association for Retarded Children. But my impressions of Cambridge were hellish, “Snakepit”-ish, I am sorry to say. Rows of beds in huge rooms, the ever present smell of urine, blood curdling screams, patients with helmets banging their heads on the floor, sitting in their own waste or roaming without a destination. It made me ponder at an early age the existence of God and the inhumanity of our society towards these “angels.”
I remember one time when we picked up Cathy, she was covered with bruises and scabs. My father was livid about this situation and wrote letters to the Governor and Representatives about the conditions at Cambridge and this specific incident.
My mother told me in the last year of her life that one of my sisters had been sexually assaulted at Cambridge by an employee. I was incredulous. Not that such an assault happened to my sister, but that my mother did not tell me at the time. My father acquiesced to keeping it from me. When I was told, I was angry, nauseated and heart broken to think that my sister had to go through such a violent, horrific thing.
Then, thanks to Governor Wendell Anderson and ARC, things got better at Cambridge. Smaller, four beds to a room, more activities for residents, more effective oversight of conditions, more regulations. And most importantly, the plan to close Cambridge and move residents to smaller group homes.
Thirty four years ago my sisters moved to Furness, a brand new Phoenix Residence, Inc. group home in Maplewood. Our family was elated to be so close to them and visits increased.
And Gina came home for weekends more often. For all three sisters, their palsy has deteriorated over the years. When Gina fell and broke her hip, she never recovered and has been wheelchair bound for many years. As my parents aged, it became harder to transport the wheelchair and help get Gina up the flights of stairs and eventually the weekend visits ended. But still my parents visited the girls at Furness every 2 weeks until their last few months on earth. My “normal” sister, brother and I have kept up the “two weeks” routine. We also are active advocates for them, which brings me to the purpose of this letter.
Phoenix Alternatives, Inc. Day Programs, Phoenix Residence Inc and Furness have been wonderful. I thank the care givers and administration from the bottom of my heart. My sisters are well cared for and are respected and treated with dignity. Not long ago, the main care giver for my sisters for the last 18 years at Furness had to retire because of health issues. Suzanne was like a mother to my sisters and losing her was a huge emotional loss for my sisters.
Furness residents have experienced three deaths over the last few years. As the resident population ages, the Direct Support Professionals have become hospice care givers. As the resident population ages, there is an increase in medical and therapeutic needs for residents. This creates extra responsibilities and training for staff. This situation is emotionally and physically difficult for residents and care givers alike.
Unfortunately, the turnover rate for Direct Support Professionals is very high. They are not paid a living wage. Most do not receive health insurance and are only part time employees. They don’t stay long and I don’t blame them. But the result is they are unable to bond with my sisters or my sisters with them in such a short time frame. It seems that every few weeks, we meet another new care giver.
Gina loves to go to church, and we would like to have her go every Sunday. We’d be happy if it were every other Sunday, but it usually turns into about once a month. She needs the van with the wheelchair lift. The issue of staffing is the problem.
I am angered by politicians who are quick to cut funding to group homes for the disabled. They want to cut funds for families that care for severely disabled family members who are at home while on waiting lists for group homes. These are the same politicians that have joined the latest bandwagon of cutting funds for birth control and prenatal testing because the former leads to “immoral behavior” and the latter leads to abortion and the “culling of the disabled.” If these politicians really care about the severely disabled and moral behavior, if they are really “pro life,” they should practice what they preach and do everything in their power to improve the quality of life for these angels. My mother was right. My sisters and all the severely disabled will go straight to heaven when they die. The rest of us will spend a long, long time in Purgatory paying for our sins.