Guest Blog: Emma’s Story

UCPLA’s Chief Strategist Becky Hansen has more than 20 years of experience building, executing, and leading transformation initiatives within Human Services organizations.  Becky joins us to share one of her most moving stories about transformation – that of Emma (a pseudonym), an individual Becky supported as she transitioned out of an institutional setting and into a lifestyle that recognized her independence and individuality.

When I accepted my first job supporting people with disabilities in 1992, I quickly learned that each person I supported had a story to tell….the story of their life.  Some of their stories were inspiring, others heartbreaking but all of them were unique.  I found the story of their lives splashed across documents, stored in files and often left untold.   I could not have predicted the stories I would hear and become a part of.  I certainly did not anticipate that the stories of people’s lives and struggles would weave themselves into my own life so completely.  It has been a privilege to become part of the story for the people I have come to think of as my mentors and an honor to share their stories and struggle with others.  This is Emma’s story…

Several years ago, a State Institution in the Midwest was downsizing and contacted the agency I was working at to refer a woman who I will call Emma (not her real name) for community placement. Emma was accepted and I was assigned as her Service Coordinator. My first task as her Service Coordinator was to review her social history, assessments and all other documentation in her file.  As I sifted through the stacks of papers, a shocking story began to unfold.  I stayed at the office late into the night, putting the pieces of her story together.  I called Emma’s sister the next day to help me fill in the parts of her story that the documents could not capture.

Emma was born into a ‘typical’ family in the late 1940’s. Her parents were well known in the community for their service to others and she had one younger brother and one older sister. When Emma was diagnosed as having a disability, it sent her family into a tailspin. During this time, having a child with a disability was viewed as a stigma. There were few options for families and no community support. In Emma’s family, having a child with a disability was especially troubling for her father, a minister. It was his belief that Emma had been born with disabilities as a direct punishment from God. He feared that the community and his congregation would turn away from him if they new he had a ‘defective’ child.

When Emma was just a toddler, the family developed a story: they told family, friends and community members that Emma had died. This was a lie in the literal sense of the word, but in many ways accurate. Emma ceased to exist in the eyes of her parents – they made a decision and never looked back. Emma was placed in the State Institution, which was called the ‘Sub-Commission for the Feeble Minded’, and remained there for over 50 years with no visitors or contact from the outside world. Emma’s brother passed away without ever knowing she existed. Emma’s mother threatened to disown Emma’s sister if she made contact with Emma.

Emma’s life in the institution must have been horrible. As I read her social history, I learned of the teeth they had pulled out in response to her biting, the restraints they had used to tie her down when she refused to follow her schedule, and, most disturbing, the lobotomy that was performed when she was 16. The records indicated that the lobotomy was ordered due to excessive screaming. To the surprise and disappointment of her staff and physicians, the documents indicated that her screaming grew even worse after the lobotomy. I can only imagine the terror she must have felt and the reasons why she screamed.  As her story unfolded, it was hard to believe that this happened in the United States and even more difficult to believe that no one seemed to care. 

Being a part of Emma’s transition from the Institution to the community was one of the most rewarding experiences of my life.   Each day held a new experience for her.  I watched her as she turned the knob to her front door of her home and squealed when it opened.  For the first time in her life she could open the door and sit outside on her own patio.  I was with her the first time she walked into her kitchen.  Her mouth dropped open in shock when she realized she could walk right into her kitchen and get a snack.   I listened as she played the piano for the first time.  She hugged me when she realized she could decide how loud and long to play it. Emma became quite an artist, producing brightly colored abstract pieces for everyone she met.  She settled into a routine quickly and started each morning with a cup of coffee on the patio with her friends.  It was a whole new world and a life changing opportunity for many of us to support her as she explored it.   Emma’s mother passed away without ever again seeing her, but her death opened the door for her sister to become involved. Emma and her sister reconnected, sending cards, videos and letters to each other each week.

Approximately a year after Emma moved into the community, she was involved in an accident in which she injured her collar bone. Emma didn’t use traditional words to communicate, but she was clearly telling us that she hurt…that she was in pain. I went with Emma to the clinic and we were assigned to see the physician on call. When he entered the room and looked at Emma, his expression instantly changed. He flipped through her chart and then looked up at me and asked, ‘What do you want me to do with her?” I was confused, but responded, “Help her.” The doctor then made a loud sigh and started to examine her. He told me that her collar bone might be broken. He asked me ‘How retarded is she?’  I did not understand what he was asking, so he flipped through the chart quickly and announced ‘Profoundly’.  He then asked, ‘Does she use her arm for anything useful anyway?’

I will never, ever forget how I felt when these words spilled out of his mouth and into the room. Does she use her arm for anything useful??? Does she use her arm for anything useful? It was one of those moments when time seems to stand still and everything hangs in the balance. I wish I could say that I knew the right words to say.  I wish that I could say that I delivered an eloquent speech that changed his perception and fixed the situation, but all that I could do was whisper, ‘Emma…we are leaving’ and walk out the door.

The thing that haunted me the most after this happened and still does to this day is that the person who made this disgusting comment was an educated, respected physician in the community….he should know better. How is it possible for someone in a helping profession to have such little regard for a person? What has gone wrong? Why are people with disabilities sometimes viewed as a set of incurable problems instead of as a whole person?  Emma endured years of disrespect and disregard while in the institution….now she had experienced the same type of treatment in the community.

If I could rewind time, I would go back to that day and answer the doctor’s question:
Does she use her arm for anything useful? Oh yes…..she does. She paints, she cooks, she hugs, she plays the piano, she plants flowers, she strokes her pet dog, she prepares her coffee each morning, she folds her clothes, she fixes her hair just the way she likes it, she turns on her radio, she touches the grass, she decorates her house on the holidays, she rocked my babies when they were little, she touched my heart….yes, she certainly uses her arm for something useful.