Chapter One
HOME AMONG THE TREES
A Visit with Karen Thompson,
Sharon Kowalski and Patty Bresser
Marj Schneider
Their house is easy to find, even without knowing the address. The prominentlydisplayed rainbow flag and the ramp sloping up to the front door aresure signs, as are the elm and blue spruce trees that surround the house andpartially obstruct the view of the river. It is the Mississippi River, about sixtyyards wide here, and the wildlife refuge on the opposite bank that fill the livingroom picture window.
Sharon Kowalski has never wanted to live in the city. This home amongthe trees is where she chooses to live, but her freedom to make that choice cameonly after an eight-and-a-half-year, hard-fought court battle that became anactivist cause in the lesbian and gay communities in the 1980s.
My friend, Elissa Raffa, and I have made the one-hour trip from Minneapolisto Clearwater, Minnesota, to interview Sharon, Karen Thompson andPatty Bresser on a humid Friday in early September. I have wanted to interviewthem for a long time, to learn more about what their lives are like, now that theSharon Kowalski—Karen Thompson case is no longer the subject of publicity,now that it's no longer a hot issue in the lesbian and disability communities. Iwanted to know how they live their lives as a "family of affinity," as a sensiblejudge finally recognized in an appellate court ruling in December 1991.
This case, along with the AIDS epidemic, jolted lesbians and gay men intotalking about and preparing the documents they hoped would ensure their legalrights 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. AsKaren Thompson was propelled out of the closet by the necessity to speak outpublicly about what was happening to her and to Sharon, many advocacy groupsand individuals became involved in raising money to help her with attorneyfees. Those efforts revealed the significance of this case for the lesbian and gaycommunities.
Many of Karen's responses to my questions are well practiced; yet condensingnearly fourteen years of her and Sharon's lives into the "highlights" isno easy task. Patty Bresser has had fewer opportunities to talk about her lifewith Karen and Sharon, but she is almost as familiar with the case, having readthrough boxes of court documents for the book she and Karen are co-authoringabout 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-termmemory loss from the accident that disabled her in 1983. She understandswhat goes on in the present moment and may choose to participate, to answerquestions, to laugh or to show initiative in other ways. She doesn't remembermeeting me before nor will she remember me in the future, or that she was partof this interview. Sharon seems most aware of events and people from beforeher accident—topics that are in her long-term memory. She may know somethingof Karen today, but most of her "picture" of Karen is from before theaccident. Other people and experiences in her life since the accident seem tosink in over time, but it's difficult to know what she retains and thinks about. YetSharon is vibrant, full of life, loving and playful, qualities evident once I spenttime with her. She communicates generally in nonverbal ways that have to beinterpreted 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, adevice 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 assignmentteaching high school physical education and health; Karen taught similarsubjects at St. Cloud State University. Karen says, "It's hard to even think back tothat time because I'm a completely different person now. I was in total denial ofwho I was—I didn't want to admit that loving Sharon made me anything. I justhappened to fall in love with someone who was a woman. I hadn't even toldSharon 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 theyhad spent with her and Karen when their car was struck head-on by a drunkdriver. All three were injured and taken to different hospitals. Sharon's nieceMelissa later died. Karen got a call from Sharon's father, Donald Kowalski, tellingher 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 herinformation because she "wasn't family." Overhearing the situation, a priesthelped Karen learn that Sharon was in a coma in critical condition.
Sharon's parents arrived, and with Karen waited days for Sharon to comeout of the coma. A month after the accident, when Sharon was moved from theintensive care unit to the rehabilitation floor, the Kowalskis returned home. Theycame back to St. Cloud for a few days every couple of weeks, staying at Karenand Sharon's home during these visits. Karen believes they must have foundsomething during this time that made them begin to suspect Karen and Sharon'sactual relationship. Their cordial attitude toward Karen changed. "I was takenout of Sharon's room and told by Donald Kowalski that no one could love Sharonlike family loved Sharon, that family could meet all of Sharon's needs, and that ifI 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 comafor some six months and, at times, responded and communicated with Karen,who spent hours stretching Sharon's arms and fingers, legs and toes, hopingSharon would be able to use some parts of her body as she came out of thecoma. During this time the effects of Sharon's traumatic brain injury were beingassessed.
Karen sought the advice of a psychologist, who helped her decide to giveSharon's parents more time before talking to them about her relationship withSharon. But then the Kowalskis started making plans to move Sharon out of theSt. 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 homewas in the St. Cloud area with her, that Sharon wouldn't want to leave. Karenwrote the Kowalskis a letter, hoping they'd be able to work through their feelingsin 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 neverwanted 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 hadas an adult—to medical care, to rehabilitation, to staying in the area where shehad chosen to live. She learned that the only recourse she had was to enter intoa guardianship fight against Sharon's parents. Karen filed a petition for guardianshipbecause she felt she would otherwise be "barred from Sharon's life." TheKowalskis counterfiled, and that began a process of filing motions, with monthspassing before each succeeding motion was heard in court.
In the spring of 1984, Karen and the Kowalskis reached an out-of-courtsettlement in which Karen agreed that Donald Kowalski would be appointedSharon's guardian, with Karen's rights to visit and her right to have input intoSharon's medical care protected. Under the agreement, Sharon couldn't be movedout of the St. Cloud area except by court order.
Karen hadn't realized what legal rights guardianship gave to DonaldKowalski. It allowed him to hire the lawyer in the personal injury suit againstthe drunk driver, and it meant he could hire the medical personnel who wouldsay what he wanted them to say. The Kowalskis and Karen returned to courtseveral times on motions to limit Karen's visitation rights and to move Sharonfrom the St. Cloud area. In the fall of 1984, Sharon was moved to a nursinghome in Hibbing, which meant Karen had to drive three hours to see her.
In July 1985, the court gave Donald Kowalski guardianship with unlimitedpowers. Within twenty-four hours, Karen was banned from visiting Sharon,as were Sharon's friends, the Minnesota Civil Liberties Union and disability rightsgroups, which had become involved with the case. Sharon was essentially heldprisoner, 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, butto this day, it is Della Kowalski who openly expresses her hostility and animositytoward Karen. Sharon's father didn't see his actions in the court case as denyingSharon's or Karen's rights. In his view, he was "taking care of his own," protectingSharon, who "can no longer protect herself," as he said in a CBS News broadcastabout the case. Karen believes that the Kowalskis felt hopeless and inadequateabout Sharon's condition, that they believe Sharon can have no quality of lifeas a disabled person. Although her parents visit her regularly today, DonaldKowalski has said in more than one interview that he believes Sharon would bebetter off dead.
Karen filed an appeal to the 1985 guardianship decision, but every motionin the process took months before it was heard in court. While the case wasbeing appealed, Karen should have had visitation rights under the earlier guardianshipruling, but she was not allowed to visit Sharon. During the visit thatproved to be their last for three and a half years, Sharon looked at Karen andtyped, "Take me home with you."
Karen's attorneys used various laws to file motions during the appealsprocess, including the Patient's Bill of Rights and the Vulnerable Adults ProtectionAct, but neither of these statutes helped Sharon. The court ruled that thePatient's Bill of Rights imposed duties on institutions, not on guardians. But theinstitution also has to follow the wishes of the guardian, and in Sharon's caseher guardian didn't abide by these rights. The nursing home followed whatDonald Kowalski wanted. Karen's attorneys cited violations of the VulnerableAdults Protection Act. The court, however, ruled that Sharon was receiving thelevel of care directed by the physician in charge of the case. This physician haddenied Sharon occupational therapy because she would never have an occupation,although such therapy goes far beyond helping people regain skills to enablethem to return to work.
Karen points out how critical the rulings in this case regarding the Patient'sBill of Rights are for others who wind up in institutions following accidents. "Idon't think anyone understands the implications of saying that the Patient's Billof Rights doesn't impose duties on the guardian. That means the guardian canlock up a person in an institution, not allow them to see the people they want tosee, not give them proper care, and there's nothing anybody can do about it. It'sjust 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 representher in court. While at the nursing home, Sharon had clearly typed out thatshe wanted the Minnesota Civil Liberties Union to represent her, after they hadspent a day talking with her. She said she didn't think her rights were beingprotected. The court responded that Sharon didn't have the right to choose herown counsel because she was incompetent; and, no, she hadn't been tested forcompetency, 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 thestate of Minnesota, the court upheld the guardian's wishes, ignoring Sharon'srights. This prolonged, systematic violation of the requirement that Sharon betested for competency, and the denial that the Patient's Bill of Rights shouldapply to guardians, have far-reaching implications for others in similar situations.These decisions serve as a guide for attorneys arguing in other cases andcan 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 beenin a coma for over four years, it took a court order to have this testing done forthe first time.
Sharon was moved to Miller-Dwan Polinsky Institute in Duluth fortesting, which showed she hadn't received proper rehabilitation. Institute staffdetermined she was capable of making many basic life choices. This was followedby a court ruling in January 1989, ordering that Sharon receive additionalrehabilitation at the institute. The next month, Sharon's medical team at Miller-Dwansaid Sharon should be allowed to see anyone she wanted to see. Karenfinally got to see Sharon in February of 1989.
Once the medical team saw how well Sharon responded when Karen wasaround, they said Sharon should be allowed to move home. The judge, contemplatingthe question of where home for Sharon might be, decided Sharon shouldgo to Trevilla of Robbinsdale, one of the few nursing homes in Minnesota witha 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, butthe judge, fearing sexual abuse, required that a staff person accompany her onoutings with Karen, a requirement that was in place for nearly a year before itwas removed in February 1990. The judge's fear was based on groundless homophobicallegations that the Kowalskis' lawyer had made early on in the caseto try to prevent Karen from visiting Sharon.
The summer of 1989, Karen and her attorneys once again filed a petitionfor guardianship, which wasn't heard in court until November 1990. Duringthat time, Donald Kowalski asked to be removed as guardian because he didn'tlike Sharon's transfer to Trevilla of Robbinsdale, or that she was receiving visitorsand going out on passes. That meant Sharon had no guardian during thistime, so the judge acted in that role. Although Karen was the only party of recordasking for guardianship and no one counterfiled, Karen could not win guardianship.In April 1991, the judge appointed a woman as guardian who hadn'tpetitioned 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 overturnedthe lower court's decision, saying that the judge had "abused" his discretionin appointing someone else as guardian. The appellate court ordered thatKaren be appointed guardian with no restrictions. It also stated that Sharon hadthe right to be heard, to see whomever she wanted to see, to go wherever shewanted to go, to live in the least restrictive environment and to have the bestpossible 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 Karenhad 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 institutionsrather than finding viable options for them to live in the community. Karensearched 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 asmuch money to enable an individual to live in a less restrictive environment asit spends to keep someone institutionalized. It was important to find a programthat was flexible about how funds could be spent, so that, for example, Sharoncould attend an adult day care program instead of having personal care attendantsat home for so many hours. The CADI Program has made it possible forSharon to live at home for the past five and a half years. Once Karen found thisprogram, 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 throughoutthe St. Cloud area for an accessible home, but could find nothing that wouldmeet Sharon's needs. She was able to have such a home built in 1990 when itseemed 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, aboutnot being a workaholic. Speaking to Sharon directly, she says, "After I got separatedfrom you, I almost lost that. I went back to being a workaholic. I was onthe road, speaking and fundraising, and between that and my teaching job, Iliterally lost who I was. I was wishing my life away from one court hearing to thenext. I finally realized that, to survive, something had to change. I had to givemyself permission to move on with my life. I didn't know if I was ever going tobe able to see Sharon again, and if I didn't, was this the way I was going to livethe rest of my life? I made the decision that I would start dating and be open toanother relationship, but that I would never walk away from Sharon. Whoevercame into my life would have to understand that my commitment to Sharonwas a lifetime commitment. Sharon and I would always be a package deal. Ifanyone could learn to love me, they would have to love us both."
Patty Bresser had taught in the physical education department and beenan assistant coach at St. Cloud State from 1979 through 1981, and had knownSharon and Karen. She was living in Connecticut when the accident occurredand had followed the case. On one of Karen's trips out east for a speaking engagementin 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 twohours away." She managed to rearrange her work and graduate school scheduleto make time for Karen, and their relationship gradually developed, but wastotally 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 togive 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 amout in the country, with so many trees and no sidewalks." Patty also had to get toknow Sharon again over the next year, to build a relationship with her beforeSharon came to her new home. In that time, the women concluded that theirrelationships could work. Because she knew Patty before the accident, Sharonremembers Patty and knows who she is. Karen reminds Sharon that Patty is theonly one Sharon ever let ride her motorcycle. When Karen asks Sharon if theyshould "send Patty back to Connecticut," Sharon always says, "no."
This interview is not my first visit with Sharon, Patty and Karen. Eachtime I've been with them, I've felt their caring and pleasure in one another'scompany. Patty and Sharon are the playful, fun-loving members of this trio,giving balance to Karen's more serious personality. Karen talks about the teasingrelationship that has evolved between Sharon and Patty, with Sharon playingmental games with Patty involving thought processes that would seem to bebeyond 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," Karensays. Each gives to the other. "We all get what we need when we need it." Pattysays, "We work together on things, and tasks that somebody might think wouldbe 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 incorporatedtaking care of Sharon's needs into our routines."
Sharon can live successfully at home partly because she has the equipmentshe needs. That includes a Hoyer lift for making transfers, an adjustablehospital bed, a wheelchair that gives her support to sit up, a whirlpool bath anda standing frame so she can be on her feet for some time each day. Sharon alsouses boots that allow for movement when she has spasms, but that return herfeet to a ninety-degree angle. All this equipment is expensive; but Sharon hasundergone surgeries and physical therapy that could have been avoided hadsome of these devices been supplied earlier. Having such equipment makes caringfor Sharon far easier and is more cost-effective over time. But insurance andhealth care programs don't see it that way. "They never give people what theyneed 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 ismore affordable than having PCAs with Sharon at home all day and allows Sharonto participate in activities like visiting public gardens and shopping. Sharon recognizessome of the program's staff and other participants and has developedrelationships with them. PCAs also provide respite care for Sharon when Karenand Patty need a break for a day or a short vacation. Such breaks are critical fortheir 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 accessto so many public accommodations makes traveling hard on Sharon and exhaustingfor Karen and Patty. Sharon's wheelchair doesn't fit on aircraft, andaccess in hotels is often inadequate. Day trips to area lakes for fishing and otheractivities 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 otheractivities 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 allover again for Sharon. It's difficult at times to honor friendships." Patty adds, "Ithink there're a lot of things we don't get invitations to. I don't think it's becausepeople don't want us there, but they don't want to invite us knowing it's notaccessible.... Sometimes I think it would be nice if they'd just say they're having anevent, even if it's not accessible, and let us make the decision." "When the potlucksare here," Karen points out, "the house is packed. They like to come here, but it'sdifficult for us to go to some of the other places, especially in the winter."
Because Sharon was denied proper rehabilitation during the first few yearsfollowing the accident—the most crucial time for retraining motor and cognitiveskills—she will never regain some abilities. As a result, there are things Sharoncould do when she came out of the coma in 1984 that she cannot do now. Butthough Sharon has to work harder now to make gains, she is making them andcan 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 medicationsSharon had been on, medications with side effects that dampened herpersonality. She is certainly a far different woman now from who she was beforethe accident. She has survived many surgeries and physical hardships, the years ofisolation and inadequate care in the nursing home and countless experiences thatmust have been frightening and damaging to her spirit. Yet she has come throughall of this with amazing resilience and with her sense of humor intact. Sharon hasbegun 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 threewomen: how remarkable it is that Karen could sustain the legal fight for so manyyears, that she could devote herself so completely to attaining the medical treatmentand opportunities Sharon deserved. Karen never gave up. We recall someof the publicity around the case and how poorly the mainstream press addressedthe gay and disability issues at work in the court proceedings. In the lesbiancommunity, some painted Karen as the strong, valiant lesbian doing battle forher defenseless lover. Sharon was too often cast as a victim—of a tragic accident,of her parents' prejudices, of an unresponsive legal system.
Sharon had no voice, but both she and Karen became larger-than-lifefigures doing battle against homophobia. I speculate with Elissa that the romanticizingof Karen and Sharon that went on among lesbians was a way tocope with some terribly hard, scary issues. I do believe that the variety of supportthe lesbian community gave Karen was vital to her surviving the legalstruggle. Those of us around during the years when the case was a topic of communitydiscussion or who heard Karen speak learned just how prejudicial thecourt system could be and how few guarantees we have that our wishes will behonored if we cannot speak for ourselves.
I recall that the disability community was less visibly involved with thecase. Most of the participation on that front was by professionals who workedwith disabled people. When Karen contacted one national disability rights organization,"they agreed that Sharon's rights were being violated, but they couldn'tget involved because it was a gay issue." Individual disabled activists were involved,both in Minnesota and nationally. Sharon's situation gradually becamemore widely known among disability advocates, and she was invited to participatein the signing ceremony for the Americans with Disabilities Act in 1990. Ibelieve today that the disability movement might be more prominently involvedin a case such as Sharon's. There are more civil rights—oriented organizationsand a stronger disability community, at least in some parts of the country.
Elissa and I talk about how well the Thompson-Kowalski-Bresser householdfunctions. But there were moments when I caught myself wondering ifhow the women talked about their daily lives was too good to be true. In commentingon 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 seenin any family."
How many disabled people have the help of a dedicated life partner andanother devoted companion? How many of us could make such a three-personrelationship work? Yet Elissa responds that what these three are doing "is still amodel for how disabled people can live in the community." I want to agree andremember Karen's saying that one person can't meet all of the needs of somebodywith a disability. It takes openness and willingness to be innovative in relationshipsto develop the kind of long-term living arrangements that will keepdisabled people out of institutions. It takes advocacy for, and with, the disabledperson: for adequate medical care, equipment and services. It takes governmentfunding of flexible programs like the CADI Waiver Program. It takes other qualityprograms like adult day care and options for respite care. Thinking about thenecessary pieces, and all the people involved in Sharon's life, I know there mustbe other versions of this model of how disabled people can live interdependently.Knowing that Sharon, Karen and Patty have been successful makes mewant to hear other people's stories, makes me believe it is possible.
Copyright © 1999 Victoria A. Brownworth. All rights reserved.
