A well-crafted ethnographic study of disabled women's relationship with work.
- Northeastern University Press
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Meet the Author
MARY GRIMLEY MASON is Professor Emerita of English and former Director of the Women's Studies Program at Emmanuel College. She is the author of Life Prints: A Memoir of Healing and Discovery. She lives in the Boston area. ROSEMARIE GARLAND-THOMSON is Associate Professor of Women's Studies at Emory University. She is the author of Extraordinary Bodies: Figuring Disability in American Literature and Culture and coeditor of Disability Studies: Enabling the Humanities. She lives in Atlanta, Georgia.
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WORKING AGAINST ODDSStories of Disabled Women's Work Lives
By Mary Grimley Mason
NORTHEASTERN UNIVERSITY PRESSCopyright © 2004 Mary Grimley Mason
All right reserved.
Chapter OneDEBBIE "My disability is not who I am. It's something I happen to have."
I interviewed Debbie in her sunny one bedroom apartment on one of the upper floors of a subsidized apartment building that gives her a view of the city. Born in 1950 with cerebral palsy, she is a social worker at a veterans hospital and works an average of four days a week. She uses a wheelchair and hasn't walked for the last fifteen years or more. Two cats appeared from time to time as we talked, and one in particular gave Debbie affectionate rubs before stalking off. Her speech was difficult to decipher at first, but I soon caught on to the rhythm of it and understood her very well, including her witty commentary.
In discussing her family, Debbie said that her father, though always able and willing to finance her needs and education, had a hard time accepting her disability. Her mother also found it difficult. As Debbie's main care giver, she became so identified with her role that she saw her daughter's failure to improve her walking or to "get well" as an indictment of herself. Debbie recalls the day she was nosing around in the cellar and found some old medical records that described the difficulty her mother had in coming to terms with Debbie's disability. The conflict of her mother's attitude and Debbie's reaction to it framed Debbie's home life until she left for graduate school. She says, "She would always push me to do everything I could do, which was good, but she would never accept [my saying], 'I'm tired. I don't want to do that today.' She never knew when to stop." Debbie adds, "I wonder sometimes what my life would have been like if she was still alive." Her mother died of cancer in 1984, Debbie's first year in graduate school.
Debbie's primary and secondary education was in special schools for the disabled, which, she says, were not very good, particularly in preparation for college. Her high school class was the first one to have any students going to college, so the school had not developed a college preparatory curriculum. She was given speech therapy, occupational therapy, and other programs for her disability but very little academic training. She graduated in 1970 at the age of twenty.
Her college experience was not much better. Her first year at a college in New Jersey near home was, she says, "a big mistake." She arrived on the campus three years before section 504 of the Rehabilitation Act of 1973 outlawed discrimination against "otherwise qualified" individuals in federally funded programs and thus began pressuring colleges and other institutions to accommodate disabled students. Debbie was not given any special assistance. She summarizes her feelings about her first year in a college community: "If someone from Mars landed, I'd know exactly how they felt. I lasted a year." The next year she attended night classes at another university, but this time her mother accompanied her to classes and took notes. Debbie began to wonder why she was struggling to go to college. She knew her parents expected her to get a degree, but as she says, "They never asked me if I wanted to go." She decided to take a couple of years off, a decision that was the beginning of her attempt to claim her own life. After several years, however, she felt that she wanted to finish her degree and found a state college that offered courses by telephone. In 1982, twelve years after she started college, she graduated with a B.A. in psychology.
Debbie's life was turned around in 1984 when she visited a friend in Boston who helped her set up an appointment with the dean of students and dean of admissions at a graduate school of social work. "I basically talked my way in," she says, and she found the school a very positive and supportive place. They had a disability office that worked together with the school to get her what she needed, including work-study students to do her writing. "They did everything they could," she says, "and particularly the dean of students was always in my corner. She parted the waters more times than Moses." With financial help from the state rehabilitation agency, she was eventually able to complete a graduate degree in social work.
Another major turning point in Debbie's life followed the year she turned thirty-four. She decided to get a motorized wheelchair at the suggestion of her friend, a physical therapist, who urged her to make the transition from the extreme limitations she had in walking to the greater mobility a wheelchair could give her. Debbie remembers her previous confinement: "I could get around the house, but I couldn't go outside. I couldn't go downtown and I couldn't go to my own doctors' appointments." All that changed when she bought the chair. But her family's reaction was negative. Debbie exclaims, "Oh, my God! When I got this chair, they had a heart attack! [They] saw it as giving in."
But when she told her friend about her family's attitude, her friend reassured her. She said to Debbie, "Ask yourself, if you didn't have the chair, could you walk down Commonwealth Avenue with me?"
"Could you go to grad school?"
"Then I guess your family is just going to have to live with the chair, aren't they?"
Debbie summed up the event. "When I got my first motorized chair, it was like I'd been let out of jail." Her family did eventually become supportive and pleased with her new freedom.
Her new freedom helped her to decide to leave home and break her dependence on her mother, so she set herself up in an apartment with the aid of personal care assistants and began to thrive. She recalls another turning point in her life sometime after her mother's death. It was another moment when she acknowledged that accepting the limitations of her body was liberating and not defeating. At the time, she was seeing a therapist regularly. She usually consulted with the therapist by phone, but every few months they met for dinner because, as she says, "We needed some eye-to-eye, one-on-one contact." At this particular time, after they had met in a restaurant and had been served, Debbie started to laboriously feed herself, a task very difficult for her spastic hands to accomplish. She describes the scene:
My therapist, Sandy, said, "Debbie, we can do this the hard way or the easy way. You can feed yourself and we won't get to talk, or you can let me feed you and we'll get to talk and have some fun."
And I remember saying to her, "My mother would have a fit."
And Sandy stood up-we were at a table in a corner-she stood up and looked around the restaurant, then sat down and said, "Debbie, I don't see your mother here."
I've never forgotten that. And she was right. She wasn't there. And Sandy's point was, it's your life, not your mother's.
Debbie has fifty-eight hours a week of personal care assistants (PCAs). They are financed by Medicaid, but she finds and hires her own PCAs. They come and get her up in the morning-the time varies depending on her schedule-and return to give her lunch at her apartment or at work. About 4:00 P.M. they run errands for her and give her dinner, and later they help her to bed. As Debbie says, "My life runs around their work. But they're all very good and they're all very reliable. If it weren't for them, I couldn't live independently." She adds that she is not always lucky in finding good assistants and knows that the scarcity of reliable personal care assistants can be a major problem for many disabled people.
When she finished her master's degree in 1988, Debbie thought she would like to work with young people, but she had an interview with the director of a state-run facility for veterans. The director was so enthusiastic about Debbie taking the job that she talked her into it and became a friend and mentor. Debbie works with patients who are mostly elderly veterans who live in the facility's dormitory, and she confers with their families, particularly the families of the patients on the Alzheimer's ward in the hospital section of the facility.
At first the nurses were skeptical of her, she says, but recently one of them remarked, "You know, we were really mean to you," and when Debbie replied, "Yeah, you were. What was your problem?" the nurse said, "Well, I think some of it was your disability and some of it was that we didn't want a new social worker. But every day you kept coming in and coming in, and pretty soon it was like we couldn't ignore you anymore."
In fact, the staff got so used to her that when she got a new wheelchair, they didn't even notice the change. They couldn't believe it when she told them she'd had it for three or four months. "They didn't notice it," Debbie says, summing up her colleagues' attitude toward her disability. "It's not what they look at, which is what I'm trying to say. You make your disability a big deal, they're going to, too." She concludes, "My disability is not who I am. It's something I happen to have."
When I asked if she found it difficult to work on the Alzheimer's unit, she says, "Mostly, yes. You watch the patient going downhill right before your eyes, and you have families that have to make some very hard decisions and some decisions you know they are going to regret."
Debbie finds her role is often to interpret what the doctors tell (or don't tell) the families. She's critical of doctors' failure to explain the consequences of their medical orders. For instance, she says, a doctor suggested to the family of one of her patients that a feeding tube be put in to help him swallow and told them it could be taken out at a later time. But Debbie intervened.
"I said, 'Wait a minute, hold the phone here. Right now, you're not taking anything away from him. He's not eating, but that's his choice. Once you put in the feeding tube, you're not going to take it out because that means he's not going to get food.'" The family decided not to put in the feeding tube.
"They're idiots, the doctors," she concludes.
When asked if she ever considered changing jobs, Debbie admits she has thought of it. But as she explains, "A few years ago I really wanted to leave. But when I started looking around, it dawned on me that I didn't want to start all over again and have to convince people all over again that I could do the job."
"They know I can do the job," she says of her fellow workers, and she has found a cooperative environment. Lately, she has had increasing problems with disks in her upper and lower spinal column, and has had to have surgery, but she still continues to work. She concludes, "I think having been able to keep my job, keep going at my job, is a testament to me but also to the place I work."
Debbie thinks that more disabled people could work if they really wanted to, but she admits that not enough is done to show disabled people how they can work, keep medical benefits, and organize their lives. "It's only in the last fifteen or twenty years that disabled people have been out working and out in the world and not sitting at home."
As for herself, she admits that her family's pressure and support did give her the impetus to be an active member of society. In addition, she had some good advice from friends and some good luck. But equally important is her ability to claim her disability and contain it.
Deborah Jackson died on November 20, 2002. It is believed she had a stroke, not necessarily connected with her disability. This telling of her story is dedicated to her memory and is in her honor.
In April 2003, I contacted Debbie's brother, David, for permission to publish her story as she told it to me. We had several phone conversations and e-mails, and he agreed to write a brief commentary on her narrative and on his and the family's relationship to Debbie and her disability. I found his reaction to Debbie's story an example of the sometimes painful complexity of the dynamics in a family with a severely disabled member. He revealed issues of acceptance, of dependency and independence:
I'm pleased that [Debbie] will be included in your book because her accomplishments will be an inspiration to others who are disabled. I loved my sister very much and was very proud of her. I knew Debbie one way. I never treated her differently because of her CP. She was just my sister. What was lacking in her physical abilities was balanced by her brilliant mind.
In our conversations David conveyed a sense of shock to find that in her story Debbie expressed anger at her mother and a desperate need to extract herself from her family in order to empower herself. He felt that Debbie had not understood how much her mother had done for her:
Debbie was the product of a young couple who, at age twenty-two and twenty, "happened to have" a handicapped daughter. Her drive and ambition to find her independence was fueled by the dedication and pledge that my parents made to Debbie that she would live a fulfilling and accomplished life. Debbie was a brilliant soul, and my parents were very proud of her and always believed in her.
My mother made a vow to herself that Debbie would surpass every discouraging word passed along from doctors who said that she'd never speak, walk, or attend school. Does a parent ever accept a child's disability? Maybe acceptance means giving in to the disability. By giving in, would Debbie have succeeded so?
About his own and his family's relationship to Debbie, David wrote:
Having a handicapped sister forced me and my siblings to grow up quickly. I feel like we were adults by the age of six. I would fix Debbie's lunch, vacuum the house, and do laundry to help my exhausted mother who worked full-time and had four children to raise.
Since Debbie's death, I've spent a lot of time thinking of our past together-our family, the tough times and the good. I wonder if other families with disabled children share the sadness, envy, resentment, coupled with joyous holidays, happy birthdays, celebrated births, and incredible accomplishments my family dealt with through the years.
Disabilities force those affected to be more resourceful and to find alternative ways to make life work. It's not only the disabled who are affected, but the family who loves them as well.
And finally, after I had commented in one of our conversations that I believed Debbie appreciated her family but that claiming her independence was her strategy for survival and self-sufficiency, he wrote:
Debbie's tough exterior was really her defense mechanism, I guess. I never really thought of the psychological implications of Debbie's disability because she always seemed so strong, sure, and accepting of her situation. Thank you for your insight. You put things into a different perspective for me.
Excerpted from WORKING AGAINST ODDS by Mary Grimley Mason Copyright © 2004 by Mary Grimley Mason. Excerpted by permission.
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