In looking at the intersection of sexuality and disability, this nonfiction anthology challenges readers to confront how America deals with difference. Writers represent a broad range of disabilities (chronic fatigue syndrome, manic depression, cerebral palsy) as well as a variety of racial, ethnic, and class backgrounds.
|Publisher:||Avalon Publishing Group|
|Product dimensions:||6.00(w) x 8.90(h) x 0.90(d)|
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HOME AMONG THE TREES
A Visit with Karen Thompson,
Sharon Kowalski and Patty Bresser
Their house is easy to find, even without knowing the address. The prominently displayed rainbow flag and the ramp sloping up to the front door are sure signs, as are the elm and blue spruce trees that surround the house and partially obstruct the view of the river. It is the Mississippi River, about sixty yards wide here, and the wildlife refuge on the opposite bank that fill the living room picture window.
Sharon Kowalski has never wanted to live in the city. This home among the trees is where she chooses to live, but her freedom to make that choice came only after an eight-and-a-half-year, hard-fought court battle that became an activist cause in the lesbian and gay communities in the 1980s.
My friend, Elissa Raffa, and I have made the one-hour trip from Minneapolis to Clearwater, Minnesota, to interview Sharon, Karen Thompson and Patty Bresser on a humid Friday in early September. I have wanted to interview them for a long time, to learn more about what their lives are like, now that the Sharon KowalskiKaren Thompson case is no longer the subject of publicity, now that it's no longer a hot issue in the lesbian and disability communities. I wanted to know how they live their lives as a "family of affinity," as a sensible judge finally recognized in an appellate court ruling in December 1991.
This case, along with the AIDS epidemic, jolted lesbians and gay men into talking about and preparing thedocuments they hoped would ensure their legal rights to remain involved with partners or close friends in the event of accident, illness or death: wills, powers of attorney, health care proxies and living wills. As Karen Thompson was propelled out of the closet by the necessity to speak out publicly about what was happening to her and to Sharon, many advocacy groups and individuals became involved in raising money to help her with attorney fees. Those efforts revealed the significance of this case for the lesbian and gay communities.
Many of Karen's responses to my questions are well practiced; yet condensing nearly fourteen years of her and Sharon's lives into the "highlights" is no easy task. Patty Bresser has had fewer opportunities to talk about her life with Karen and Sharon, but she is almost as familiar with the case, having read through boxes of court documents for the book she and Karen are co-authoring about events since the publication of Why Can't Sharon Kowalski Come Home? by Karen and Julie Andrzejewski in 1988.
Sharon's participation in our interview is quite different. Sharon has short-term memory loss from the accident that disabled her in 1983. She understands what goes on in the present moment and may choose to participate, to answer questions, to laugh or to show initiative in other ways. She doesn't remember meeting me before nor will she remember me in the future, or that she was part of this interview. Sharon seems most aware of events and people from before her accidenttopics that are in her long-term memory. She may know something of Karen today, but most of her "picture" of Karen is from before the accident. Other people and experiences in her life since the accident seem to sink in over time, but it's difficult to know what she retains and thinks about. Yet Sharon is vibrant, full of life, loving and playful, qualities evident once I spent time with her. She communicates generally in nonverbal ways that have to be interpreted for me, since I can't see her nods, head shakes or lip movements. Sharon also uses a "speech pack" that can display or speak what she types, a device vital for her to communicate with people other than Karen and Patty.
In November 1983, Sharon and Karen had been living together for four years. They were both teachers. Sharon had recently completed a two-year assignment teaching high school physical education and health; Karen taught similar subjects at St. Cloud State University. Karen says, "It's hard to even think back to that time because I'm a completely different person now. I was in total denial of who I wasI didn't want to admit that loving Sharon made me anything. I just happened to fall in love with someone who was a woman. I hadn't even told Sharon I was gay. Sharon was ready to come out, but I just wasn't there at all."
Sharon was driving her niece and nephew home following a weekend they had spent with her and Karen when their car was struck head-on by a drunk driver. All three were injured and taken to different hospitals. Sharon's niece Melissa later died. Karen got a call from Sharon's father, Donald Kowalski, telling her that Sharon was at St. Cloud Hospital. When Karen went to the hospital, it took her hours even to find out that Sharon was alive. No one would give her information because she "wasn't family." Overhearing the situation, a priest helped Karen learn that Sharon was in a coma in critical condition.
Sharon's parents arrived, and with Karen waited days for Sharon to come out of the coma. A month after the accident, when Sharon was moved from the intensive care unit to the rehabilitation floor, the Kowalskis returned home. They came back to St. Cloud for a few days every couple of weeks, staying at Karen and Sharon's home during these visits. Karen believes they must have found something during this time that made them begin to suspect Karen and Sharon's actual relationship. Their cordial attitude toward Karen changed. "I was taken out of Sharon's room and told by Donald Kowalski that no one could love Sharon like family loved Sharon, that family could meet all of Sharon's needs, and that if I didn't stop visiting so often they'd see to it I couldn't visit at all."
But Karen continued her visits. Sharon was in various stages of the coma for some six months and, at times, responded and communicated with Karen, who spent hours stretching Sharon's arms and fingers, legs and toes, hoping Sharon would be able to use some parts of her body as she came out of the coma. During this time the effects of Sharon's traumatic brain injury were being assessed.
Karen sought the advice of a psychologist, who helped her decide to give Sharon's parents more time before talking to them about her relationship with Sharon. But then the Kowalskis started making plans to move Sharon out of the St. Cloud area to a nursing home in Hibbing, Minnesota, closer to their home. The psychologist advised Karen to come out to them, to tell them Sharon's home was in the St. Cloud area with her, that Sharon wouldn't want to leave. Karen wrote the Kowalskis a letter, hoping they'd be able to work through their feelings in private and then meet with her to talk over what was best for Sharon. Instead, they phoned, called Karen a "sick, crazy person" and said they never wanted to see her again.
The Kowalskis' reaction prompted Karen's first contact with an attorney. She asked if she and Sharon had any rights as a couple, what rights Sharon had as an adultto medical care, to rehabilitation, to staying in the area where she had chosen to live. She learned that the only recourse she had was to enter into a guardianship fight against Sharon's parents. Karen filed a petition for guardianship because she felt she would otherwise be "barred from Sharon's life." The Kowalskis counterfiled, and that began a process of filing motions, with months passing before each succeeding motion was heard in court.
In the spring of 1984, Karen and the Kowalskis reached an out-of-court settlement in which Karen agreed that Donald Kowalski would be appointed Sharon's guardian, with Karen's rights to visit and her right to have input into Sharon's medical care protected. Under the agreement, Sharon couldn't be moved out of the St. Cloud area except by court order.
Karen hadn't realized what legal rights guardianship gave to Donald Kowalski. It allowed him to hire the lawyer in the personal injury suit against the drunk driver, and it meant he could hire the medical personnel who would say what he wanted them to say. The Kowalskis and Karen returned to court several times on motions to limit Karen's visitation rights and to move Sharon from the St. Cloud area. In the fall of 1984, Sharon was moved to a nursing home in Hibbing, which meant Karen had to drive three hours to see her.
In July 1985, the court gave Donald Kowalski guardianship with unlimited powers. Within twenty-four hours, Karen was banned from visiting Sharon, as were Sharon's friends, the Minnesota Civil Liberties Union and disability rights groups, which had become involved with the case. Sharon was essentially held prisoner, prevented from seeing anyone who wasn't on a list from her father.
Donald Kowalski was always the one to speak publicly about the case, but to this day, it is Della Kowalski who openly expresses her hostility and animosity toward Karen. Sharon's father didn't see his actions in the court case as denying Sharon's or Karen's rights. In his view, he was "taking care of his own," protecting Sharon, who "can no longer protect herself," as he said in a CBS News broadcast about the case. Karen believes that the Kowalskis felt hopeless and inadequate about Sharon's condition, that they believe Sharon can have no quality of life as a disabled person. Although her parents visit her regularly today, Donald Kowalski has said in more than one interview that he believes Sharon would be better off dead.
Karen filed an appeal to the 1985 guardianship decision, but every motion in the process took months before it was heard in court. While the case was being appealed, Karen should have had visitation rights under the earlier guardianship ruling, but she was not allowed to visit Sharon. During the visit that proved to be their last for three and a half years, Sharon looked at Karen and typed, "Take me home with you."
Karen's attorneys used various laws to file motions during the appeals process, including the Patient's Bill of Rights and the Vulnerable Adults Protection Act, but neither of these statutes helped Sharon. The court ruled that the Patient's Bill of Rights imposed duties on institutions, not on guardians. But the institution also has to follow the wishes of the guardian, and in Sharon's case her guardian didn't abide by these rights. The nursing home followed what Donald Kowalski wanted. Karen's attorneys cited violations of the Vulnerable Adults Protection Act. The court, however, ruled that Sharon was receiving the level of care directed by the physician in charge of the case. This physician had denied Sharon occupational therapy because she would never have an occupation, although such therapy goes far beyond helping people regain skills to enable them to return to work.
Karen points out how critical the rulings in this case regarding the Patient's Bill of Rights are for others who wind up in institutions following accidents. "I don't think anyone understands the implications of saying that the Patient's Bill of Rights doesn't impose duties on the guardian. That means the guardian can lock up a person in an institution, not allow them to see the people they want to see, not give them proper care, and there's nothing anybody can do about it. It's just frightening that that can happen."
After the accident, Sharon was considered incompetent. The label "incompetent" meant that Sharon was never allowed to choose counsel to represent her in court. While at the nursing home, Sharon had clearly typed out that she wanted the Minnesota Civil Liberties Union to represent her, after they had spent a day talking with her. She said she didn't think her rights were being protected. The court responded that Sharon didn't have the right to choose her own counsel because she was incompetent; and, no, she hadn't been tested for competency, but yes, she was incompetent and couldn't hire her own counsel.
More than twenty times, when this case went to the appellate court of the state of Minnesota, the court upheld the guardian's wishes, ignoring Sharon's rights. This prolonged, systematic violation of the requirement that Sharon be tested for competency, and the denial that the Patient's Bill of Rights should apply to guardians, have far-reaching implications for others in similar situations. These decisions serve as a guide for attorneys arguing in other cases and can become the justification for practices that violate people's rights.
It wasn't until September 1988 that Sharon was tested for competency, testing required annually under Minnesota law. Even though she had not been in a coma for over four years, it took a court order to have this testing done for the first time.
Sharon was moved to Miller-Dwan Polinsky Institute in Duluth for testing, which showed she hadn't received proper rehabilitation. Institute staff determined she was capable of making many basic life choices. This was followed by a court ruling in January 1989, ordering that Sharon receive additional rehabilitation at the institute. The next month, Sharon's medical team at Miller-Dwan said Sharon should be allowed to see anyone she wanted to see. Karen finally got to see Sharon in February of 1989.
Once the medical team saw how well Sharon responded when Karen was around, they said Sharon should be allowed to move home. The judge, contemplating the question of where home for Sharon might be, decided Sharon should go to Trevilla of Robbinsdale, one of the few nursing homes in Minnesota with a young adult rehabilitation ward. He saw this as neutral ground where Karen, other friends and Sharon's family could all visit. While Sharon was at Trevilla, another ruling said that she could be allowed out on passes from Trevilla, but the judge, fearing sexual abuse, required that a staff person accompany her on outings with Karen, a requirement that was in place for nearly a year before it was removed in February 1990. The judge's fear was based on groundless homophobic allegations that the Kowalskis' lawyer had made early on in the case to try to prevent Karen from visiting Sharon.
The summer of 1989, Karen and her attorneys once again filed a petition for guardianship, which wasn't heard in court until November 1990. During that time, Donald Kowalski asked to be removed as guardian because he didn't like Sharon's transfer to Trevilla of Robbinsdale, or that she was receiving visitors and going out on passes. That meant Sharon had no guardian during this time, so the judge acted in that role. Although Karen was the only party of record asking for guardianship and no one counterfiled, Karen could not win guardianship. In April 1991, the judge appointed a woman as guardian who hadn't petitioned for guardianship or gone through a hearing to determine her qualifications. She was a friend of the Kowalskis who had known Sharon in high school, but had visited her infrequently since the accident.
Karen appealed again, and in December 1991 an appellate court overturned the lower court's decision, saying that the judge had "abused" his discretion in appointing someone else as guardian. The appellate court ordered that Karen be appointed guardian with no restrictions. It also stated that Sharon had the right to be heard, to see whomever she wanted to see, to go wherever she wanted to go, to live in the least restrictive environment and to have the best possible medical care. Karen says, "Those were rights I thought we already had, but it took us over eight years to get a court decision to protect those rights." The actual implementation of guardianship had to go back to a lower court, where the judge stalled on the process, and it wasn't until August 1992 that Karen had the documents allowing her to act as guardian.
Then the fight shifted from the legal system to the health care system, where funding and programs are biased toward keeping people in institutions rather than finding viable options for them to live in the community. Karen searched for an affordable program that would enable Sharon to live at home. Finally they found the CADI (Community Alternative for Disabled Individuals) Waiver Program, a Minnesota program that says the state must spend as much money to enable an individual to live in a less restrictive environment as it spends to keep someone institutionalized. It was important to find a program that was flexible about how funds could be spent, so that, for example, Sharon could attend an adult day care program instead of having personal care attendants at home for so many hours. The CADI Program has made it possible for Sharon to live at home for the past five and a half years. Once Karen found this program, it was only a few months before Sharon came home in April 1993.
Now there was a home for Sharon to live in. Karen had searched throughout the St. Cloud area for an accessible home, but could find nothing that would meet Sharon's needs. She was able to have such a home built in 1990 when it seemed a real possibility that Sharon would eventually live there.
During our visit, Karen talks about all the things she has learned from Sharon, both prior to and since the accident: about being more emotionally open, about not being a workaholic. Speaking to Sharon directly, she says, "After I got separated from you, I almost lost that. I went back to being a workaholic. I was on the road, speaking and fundraising, and between that and my teaching job, I literally lost who I was. I was wishing my life away from one court hearing to the next. I finally realized that, to survive, something had to change. I had to give myself permission to move on with my life. I didn't know if I was ever going to be able to see Sharon again, and if I didn't, was this the way I was going to live the rest of my life? I made the decision that I would start dating and be open to another relationship, but that I would never walk away from Sharon. Whoever came into my life would have to understand that my commitment to Sharon was a lifetime commitment. Sharon and I would always be a package deal. If anyone could learn to love me, they would have to love us both."
Patty Bresser had taught in the physical education department and been an assistant coach at St. Cloud State from 1979 through 1981, and had known Sharon and Karen. She was living in Connecticut when the accident occurred and had followed the case. On one of Karen's trips out east for a speaking engagement in 1989, she and Patty spent time together. Over the next couple of years, Karen made frequent trips to the northeast, and Patty says she was always "only two hours away." She managed to rearrange her work and graduate school schedule to make time for Karen, and their relationship gradually developed, but was totally unexpected for both of them. They talked about what might be possible, and finally Karen asked Patty if she would move to Minnesota. Patty agreed to give it a try, knowing she could go back to Connecticut if things didn't work out.
Patty moved in May 1992. At first she wondered what she had gotten into: "I didn't know a soul. Like, where am I? I was kind of a city girl, and here I am out in the country, with so many trees and no sidewalks." Patty also had to get to know Sharon again over the next year, to build a relationship with her before Sharon came to her new home. In that time, the women concluded that their relationships could work. Because she knew Patty before the accident, Sharon remembers Patty and knows who she is. Karen reminds Sharon that Patty is the only one Sharon ever let ride her motorcycle. When Karen asks Sharon if they should "send Patty back to Connecticut," Sharon always says, "no."
This interview is not my first visit with Sharon, Patty and Karen. Each time I've been with them, I've felt their caring and pleasure in one another's company. Patty and Sharon are the playful, fun-loving members of this trio, giving balance to Karen's more serious personality. Karen talks about the teasing relationship that has evolved between Sharon and Patty, with Sharon playing mental games with Patty involving thought processes that would seem to be beyond Sharon's abilities. Sharon is clearly happy living with both of them.
"Our family's full of love, full of caring and full of unselfishness," Karen says. Each gives to the other. "We all get what we need when we need it." Patty says, "We work together on things, and tasks that somebody might think would be work, like giving Sharon a bath, or getting her standing up, we all do together. It takes just a few minutes and makes things so much easier." "The difference is," Karen says, "it can be fun. None of us is the martyr type. We've incorporated taking care of Sharon's needs into our routines."
Sharon can live successfully at home partly because she has the equipment she needs. That includes a Hoyer lift for making transfers, an adjustable hospital bed, a wheelchair that gives her support to sit up, a whirlpool bath and a standing frame so she can be on her feet for some time each day. Sharon also uses boots that allow for movement when she has spasms, but that return her feet to a ninety-degree angle. All this equipment is expensive; but Sharon has undergone surgeries and physical therapy that could have been avoided had some of these devices been supplied earlier. Having such equipment makes caring for Sharon far easier and is more cost-effective over time. But insurance and health care programs don't see it that way. "They never give people what they need unless they fight for it," Karen notes.
Patty and Karen don't provide all of Sharon's care. A personal care attendant (PCA) comes in the mornings to get Sharon ready for the Day Break Program, which she attends five days a week. The St. Benedict's Center program is more affordable than having PCAs with Sharon at home all day and allows Sharon to participate in activities like visiting public gardens and shopping. Sharon recognizes some of the program's staff and other participants and has developed relationships with them. PCAs also provide respite care for Sharon when Karen and Patty need a break for a day or a short vacation. Such breaks are critical for their living situation to work. "I can feel when I'm getting tired," Karen says, "when I need a break from getting up every night to turn Sharon."
Sharon also loves to travel and do things, but the lack of adequate access to so many public accommodations makes traveling hard on Sharon and exhausting for Karen and Patty. Sharon's wheelchair doesn't fit on aircraft, and access in hotels is often inadequate. Day trips to area lakes for fishing and other activities closer to home are easier to manage.
In some respects, Sharon's having a disability means they all have a disability, in terms of where they get invited and what they do. Potlucks and other activities in the lesbian community are often held in inaccessible locations. "People have to really want to get to know a person with a disability," Karen says, "especially with Sharon because each time someone sees her, it's the first time all over again for Sharon. It's difficult at times to honor friendships." Patty adds, "I think there're a lot of things we don't get invitations to. I don't think it's because people don't want us there, but they don't want to invite us knowing it's not accessible.... Sometimes I think it would be nice if they'd just say they're having an event, even if it's not accessible, and let us make the decision." "When the potlucks are here," Karen points out, "the house is packed. They like to come here, but it's difficult for us to go to some of the other places, especially in the winter."
Because Sharon was denied proper rehabilitation during the first few years following the accidentthe most crucial time for retraining motor and cognitive skillsshe will never regain some abilities. As a result, there are things Sharon could do when she came out of the coma in 1984 that she cannot do now. But though Sharon has to work harder now to make gains, she is making them and can do some things no one would have thought possible following the accident.
Karen points out that it took years to reduce the large number of medications Sharon had been on, medications with side effects that dampened her personality. She is certainly a far different woman now from who she was before the accident. She has survived many surgeries and physical hardships, the years of isolation and inadequate care in the nursing home and countless experiences that must have been frightening and damaging to her spirit. Yet she has come through all of this with amazing resilience and with her sense of humor intact. Sharon has begun to write a little, to speak and to show her pleasure by laughing out loud.
Driving back to Minneapolis, Elissa and I talk about our visit with the three women: how remarkable it is that Karen could sustain the legal fight for so many years, that she could devote herself so completely to attaining the medical treatment and opportunities Sharon deserved. Karen never gave up. We recall some of the publicity around the case and how poorly the mainstream press addressed the gay and disability issues at work in the court proceedings. In the lesbian community, some painted Karen as the strong, valiant lesbian doing battle for her defenseless lover. Sharon was too often cast as a victimof a tragic accident, of her parents' prejudices, of an unresponsive legal system.
Sharon had no voice, but both she and Karen became larger-than-life figures doing battle against homophobia. I speculate with Elissa that the romanticizing of Karen and Sharon that went on among lesbians was a way to cope with some terribly hard, scary issues. I do believe that the variety of support the lesbian community gave Karen was vital to her surviving the legal struggle. Those of us around during the years when the case was a topic of community discussion or who heard Karen speak learned just how prejudicial the court system could be and how few guarantees we have that our wishes will be honored if we cannot speak for ourselves.
I recall that the disability community was less visibly involved with the case. Most of the participation on that front was by professionals who worked with disabled people. When Karen contacted one national disability rights organization, "they agreed that Sharon's rights were being violated, but they couldn't get involved because it was a gay issue." Individual disabled activists were involved, both in Minnesota and nationally. Sharon's situation gradually became more widely known among disability advocates, and she was invited to participate in the signing ceremony for the Americans with Disabilities Act in 1990. I believe today that the disability movement might be more prominently involved in a case such as Sharon's. There are more civil rightsoriented organizations and a stronger disability community, at least in some parts of the country.
Elissa and I talk about how well the Thompson-Kowalski-Bresser household functions. But there were moments when I caught myself wondering if how the women talked about their daily lives was too good to be true. In commenting on the PCAs who have worked with Sharon, Karen quoted one of them: "You know, there's more love in this home, in this family, than I have ever seen in any family."
How many disabled people have the help of a dedicated life partner and another devoted companion? How many of us could make such a three-person relationship work? Yet Elissa responds that what these three are doing "is still a model for how disabled people can live in the community." I want to agree and remember Karen's saying that one person can't meet all of the needs of somebody with a disability. It takes openness and willingness to be innovative in relationships to develop the kind of long-term living arrangements that will keep disabled people out of institutions. It takes advocacy for, and with, the disabled person: for adequate medical care, equipment and services. It takes government funding of flexible programs like the CADI Waiver Program. It takes other quality programs like adult day care and options for respite care. Thinking about the necessary pieces, and all the people involved in Sharon's life, I know there must be other versions of this model of how disabled people can live interdependently. Knowing that Sharon, Karen and Patty have been successful makes me want to hear other people's stories, makes me believe it is possible.
Table of Contents
|Introduction Victoria A. Brownworth||xi|
|tears Victoria A. Brownworth||3|
|Home Among the Trees: A Visit with Karen Thompson, Sharon|
|Kowalski and Patty Bresser Marj Schneider||6|
|Steps and Climbing: An Interview with Joyce Peltzer Susan|
|Seeing Is Be(liev)ing Deborah Peifer||31|
|Backward by Threes Faith Reidenbach||35|
|From Each ... to Each Lizard Jones||48|
|The Laws of Physics: A Conversation with D.A. Watters||57|
|A Dialogue on Disability: To the Person Who "Helps" Me Maura|
|Hang-Gliding: An Interview with Maura Kelly Victoria A|
|Autoimmune Disease: A Personal Perspective Patricia Nell|
|The Madwoman of off our backs Carol Anne Douglas||90|
|STILL. FEMME. Sharon Wachsler||109|
|Complications: The DeafCommunity, Disability and Being a|
|Lesbian MomA Conversation with Myself Vicky D'aoust||115|
|Two Communities: Lesbian and Deaf Cultures Meet||124|
|Flirting with You: Some Notes on Isolation and Connection|
|Who Chooses? The Debate over Eugenics and Euthanasia|
|Victoria A. Brownworth||136|
|Private Dancer: Evolution of a Freak Nomy Lamm||152|
|In a New Light Erin Lawrence||162|
|Evidence Sue Russell||172|
|Passing Through Shame Mary Frances Platt||180|
|Personal Assistance: A Job, a Politic Mary Frances Platt||188|
|Bodies in Trouble Ellen Samuels||192|
|Hidden Disability: A Coming Out Story Carolyn Gage||201|
|Heritage of Healing Huhanna||212|
|Writing from the Body Nicola Griffith||221|
|Panic Attack: A Dialogue Between Polly Carl and Raquel|
|(Rocki) Volaco Simões Susan Raffo||233|
|Giving Birth Julia Trahan||246|
|Against the Body of My Mother Susan Raffo||252|
|Seeking Community: Some Lessons from a Catholic Girlhood|
|Victoria A. Brownworth||264|
|betrayal Ruthann Robson||284|
|literary ambition Ruthann Robson||286|
|About the Contributors||291|