Ruth Sienkiewicz-Mercer was an amazing woman who, although severely disabled, became an inspiring disabled rights activist & published a moving book about her life.
Ruth was born in 1950 in Massachusetts. She was a healthy baby until, at just five weeks old, she became very ill. She had a temperature, was dehydrated & started to have convulsions. Her parents rushed her to the hospital where the doctors did all they could to help her. Soon she was home again and everything seemed fine. In fact for the first year of her life it looked like Ruth had recovered completely. However, just after her first birthday her parents realised that she was not developing the way other children her age were. After tests at the hospital Ruth was diagnosed with cerebral palsy, which they now knew was a result of the illness she had had as a baby (encephalitis) which had affected her brain.
Ruth was almost entirely paralysed and would need continuous care. She was still able to move some of the muscles in her face, she could move her eyes and could make about ten different sounds, but would never be able to speak. To begin with she lived at home with her family, with her parents – especially her mother, – caring for her. They developed a simple way of communicating with Ruth where she would look up to say ‘yes’ and purse her lips to say ‘no’. Despite this, when she was 6 years old, doctors examining and ‘testing’ Ruth labeled her an ‘imbecile’, a word we wouldn’t use today but which meant they believed she had a severe mental disability, as well as physical.
Eventually, it became difficult for her mother to care for her. Her mother had back problems and another baby to look after, so eventually her parents found a specialist centre that would look after Ruth. She moved to the Crotched Mountain Rehabilitation Centre where she thrived; she later described her time there as “some of the happiest moments of my life.” However, after three and a half happy years there her family’s finances suffered and they were no longer able to pay for her place. She returned home, to an even bigger family (two more siblings had arrived while she had been at Crotched Mountain). Her parents did their best to care for her, but soon realised that they couldn’t give her the level of care she needed, nor the level of brilliant stimulation which she had received whilst she had been in care. After two years living at home they decided that they would look for somewhere for Ruth to live with round the clock care.
Ruth moved to the Belchertown State School in 1962, aged 11. Belchertown State School was a large institution for both physically and mentally disabled people. It was a far cry from the caring atmosphere of the Crotched Mountain Centre, and was the beginning of a desperate time for Ruth. The staff ignored Ruth, force-fed her, left her in nappies (diapers) and kept her lying on a bed with no stimulation. No-one tried to communicate with Ruth, the staff “thought that my yes-and-no signals were mindless gesticulations,” she recounted later in her life, “and I had no way of telling them anything different. As long as these people considered my brain useless and my facial expressions meaningless, I was doomed to remain ‘voiceless.’ “* Her parents weren’t allowed to visit, and on her trips home Ruth was powerless to communicate with them her suffering.
This misery went on for years, until one day a chance happening began to turn things around. One of nurses on duty made a joke, and noticed that Ruth appeared to have laughed! This was the first step towards communication between Ruth and those around her. The nurse realised that Ruth could respond to questions she was asking using her facial muscles and eye movements. Ruth later wrote about the incredible moment her nurse spoke to her:
” ‘Ruthie, are you trying to tell me something?’ With a broad grin on my face, I looked at her squarely. Then I raised my eyes up to the ceiling again in such an exaggerated way that I thought my eyes would pop up through the top of my head. Wessie knew that she was onto something, but she wasn’t sure just what. She pondered it for a few more seconds . . . then it clicked! A silent conversation flashed between us as loud and clear as any spoken words. Even before she asked me a dozen times over, and before I exuberantly answered a dozen times with my eyes raised skyward, Wessie knew. And I knew that she knew. I was raising my eyes to say ‘Yes.’ “*
After this breakthrough things began to improve, Ruth was moved to a wheelchair, was properly dressed and began to communicate using word boards with her carers. This involved using boards with pictures, words or letters and watching for Ruth’s signals for the words she wanted to use. In this way people learnt to communicate with her and for the first time she was able to express herself.
Ruth began to flourish and in 1978 finally left Belchertown, moving into an assisted living unit with others from the school. She described that day as “one of the happiest days of my life, as we drove away from a life of misery and pain, to a life of freedoms: the freedoms of independent living.” Ruth fell in love with, and in 1980 married, a fellow ex-patient from Belchertown and they moved into their own flat together, assisted by personal carers.
Some time earlier Ruth had begun work on her autobiography with a man called Steven Kaplan, who she met when he was her teacher, and who became her friend. Using word boards he had begun to get down on paper Ruth’s story, in her own words. In 1986 Ruth went to a publisher with the unfinished transcript. When they agreed to publish she reunited with Steven and began work on completing the book. They painstakingly worked together, Steven making sure that each word, each phrase was exactly what Ruth wanted to say. “This was her story all the way,” he writes in the book’s introduction, “Ruth’s eyes always told me if I was getting it just right, and if not, how far off I was.”
The book, I Raise My Eyes to Say Yes was published in 1989 and Ruth’s story was told around the world. Ruth became a disability rights activist and, with the help of an electronic speech synthesiser, she was able to deliver powerful speeches which she composed. She told people about her experiences and fought for the right of disabled people to be treated with dignity and respect. She appeared on television programmes, was interviewed for magazines and spoke in front of countless audiences.
Belchertown State School became known for it’s inhumane treatment of patients, with many others speaking out as Ruth had. Several lawsuits were filed against it, and in 1992, in part due to Ruth’s activism, it was closed down for good.
Ruth died in 1998, but she left behind her a powerful legacy and incredible story.
*Excerpts taken from I Raise My Eyes to Say Yes, Ruth Sienkiewicz-Mercer and Steven B. Kaplan, Whole Health Books.
Find out more…
Here is a transcript of a powerful speech Ruth once made.
There are many charities which support people with cerebral palsy & their families. Find out more about the condition and supporting those with it at cerebralpalsy.org.uk
You can see Ruth and Steven being interviewed on the Joan Rivers show in this clip:
Speech transcript http://text.oschene.com/rsm_speech.html
official website http://www.iraisemyeyes.com/