Ethics: The Day Self-Determination Died

By: Liz Cameron

Self-determination. This is a term I throw around a lot in my social work classroom. It is a term familiar in our social work lexicon—a term that flows off the tongue. Yet, how do we really “live” self-determination?

    Perhaps facing the intellectual implementation challenges of self-determination in a social work practice context allows for more reflection than I am able to engage in on a personal front. These days, I often feel that self determination has died, in my personal life, at least. Exploring how we implement this important social work concept in our own lives is vital to engaging in ethical and mindful social work practice.

    This essay embraces the dark side. It talks about one family’s experience with applying self-determination to a variety of life situations.

    As the sibling of Agnes, a person with mental retardation, the grandchild of fiercely independent Depression-era survivors, the child of an aging parent with Parkinson’s disease, and a researcher interested in disability services, I find the issue of how exactly one should implement self-determination to be a constant puzzle. In some ways, it is completely congruent with my familial culture, and in other ways, it leaves my stomach tied up in knots.

    It was only 35 years after my family adopted Agnes from South Asia, who they later determined was a person with moderate mental retardation and seriously challenging behaviors, that I came to read about self-determination. Now, I know self-determination to be the theoretical and human-rights oriented battle cry embraced by disability policymakers, practitioners, and academic researchers alike, of which I am now one. I would say that this was a “no-brainer” for me, given that self-determination was the way my family (and most of my immediate community) lived life, but that would not be politically correct.

    Over the past four decades, our family has worked hard to embrace self-determination with vim and vigor—even in the face of the strengths and challenges of three grandparents with dementia and a parent with life-threatening juvenile-onset diabetes and cancer—as have many other families and communities in the United States and around the world.

    In my New England upbringing, the Yankee traditionalist ideals of individualism and self-sufficiency (fueled by the poverty of the Great Depression my father had experienced as a child) were endemic. These ideals found their way into the very core of my existence, so I did not question them as I became involved in the world of disability policy on my own terms. Community barn-raisings, church fund-raisers, and quilting bees for charity were activities my grandparents had considered a way of life. We spent a month each year at my parents’ far-flung honeymoon-built camp in rural northern Maine, where we lived “off the grid.” This meant that we had no electricity, water, phone, or plumbing. We read by candlelight, caught our own white perch for dinner, lugged pails of lake water uphill to boil for drinking, made basic furniture out of logs and saplings, and foraged for berries and herbs with minimal grocery store trips for the ice that kept my mother’s insulin fresh for her twice-daily injections. Her mother was beside herself that a person with her juvenile-onset disability would engage in such dangerous behavior.

    During nights by the fire, Dad would tell Agnes and me stories about the curious-looking man, Benny, who mowed all the lawns in one of the many towns in which my father’s family lived during the troubled 1930s. Benny had just been “a bit slow and different,” supported by local society in this manner in order to avoid the local almshouse, as my grandfather referred to it. On my mother’s side, my Tia Abuela (great aunt) was “crippled” by a fragile bone disease and had remained at home, cared for by her mother well into her 60th year, despite pleas from her doctors for institutionalization. Non-family-based living was not an option. Self-determination reigned supreme in these families, despite the financial challenges of the Great Depression on one side and losing the family’s business and wealth to General Franco in Spain on the other.

    My parents adopted Agnes as an infant from a far-away South Asian country. They soon realized that things were not as they should be. Arriving in their arms at the local airport with a bruise on her head, she did not coo, laugh, or cry as a baby should. In fact, she began to exhibit aggressive behavior against other young children before she finally began to speak. Dragged from expert to expert, the last in the line finally said, “She has mild to moderate mental retardation, but your problems will really begin when she is a young adult. Institutionalize her or get her on medications.” These were not acceptable options to my parents, who fell back on their Christian values of “taking what God has given us,” as well as their inborn values of individualism and self-reliance. Agnes remained at home with us, for better or worse, and—call me negative and not strengths-based—there was a lot of “worse.” My mother quit her tenure-track research life fraught with the ravages of sexism in the early 1960s in favor of plowing through child development, parenting, and speech/language texts, all devoted to “the Agnes effort.”

    Despite Agnes’ violent and inward-focused tantrums and self-injurious behavior that left smears of blood, hair, skin, and broken furniture around our home, there were beautiful family moments when we laughed together and enjoyed happy times that I wouldn’t take back for a million bucks. Throughout, my father always said “we are not going to let drugs dampen Agnes’ sparkle.” And indeed, she did have a special sparkle. On good days, Agnes did indeed exhibit sparkle in her conversations with us, her neighbors, her schoolmates. Maintaining Agnes’ sparkle and supporting her strengths was the goal that sustained my parents in their efforts to keep her in the public schools, attending church, or on regular family trips, be they to the grocery store or vacations. My parents’ efforts and, to a great extent, the incredibly giving and kind efforts of various friends and community members to facilitate Agnes’ community inclusion are at the heart of what I believe self-determination is all about. The acceptance and patience with which Agnes’ odd and sometimes violent ways were handled in my hometown were truly heart-warming, much as Rachel Simon has written about the bus drivers who accepted her sister with mental retardation, in her book Riding the Bus with My Sister.

    Of course, all of these activities and efforts took place in the decades immediately after Willowbrook, the de-institutionalization movement, and the realization of what was to come with the baby boom generation. My parents kept on with the self-determination approach in support of Agnes’ life at home, but soon we faced issues with another part of the family that placed a great strain on our proud family tradition of independence and self-determination.

    As our mother suffered through cancer treatments, we often found the remnants of Agnes’ forgotten internal fury in the form of blood-stained wooden floors beneath rugs newly moved for Mom’s hospital bed. A year after her second cancer diagnosis, my mother made the informed choice to stop fighting a losing battle with cancer, and soon passed away at home from pneumonia. My father and a hospice nurse shared the responsibility for her care until the end.

    After my mother’s death, Agnes collected the names, addresses, and telephone numbers of all the funeral homes and churches in the phonebook, and she started on a multi-year campaign of vulgar letters and phone calls to the people closest to Mom in her mind—the undertakers and ministers. Again, we laughed instead of crying. We worked with Agnes to find a balance between decorum, neighborliness, and the insatiable habit of letter-writing and telephoning that had already landed her with the threat of a restraining order from at least one teen heartthrob in Hollywood. The staff at her local community-based group home did their best to support her, but the picture was not all rosy and successful in happily-ever-after style. Agnes was perhaps too well acquainted with the local police department after numerous public tantrums, home invasions, and two break-ins to the local funeral home to “get closer to God and Mom.” The letters and phone calls to anyone she has ever been able to get an address or phone number from continue.

    Agnes has also had 50+ psychiatric hospitalizations or emergency department visits in the last few years. In an ironic reversal of my family’s longstanding wishes to “keep Agnes away from the Thorazine shuffle,” “the system” resisted the use of anti-psychotic medication in the face of the failure of the anti-depressants my family had begrudgingly accepted several years prior. Agnes’ doctors and social workers felt that the weight gain that would accompany the use of one of the new anti-psychotic medications would be a threat to her health, and would not be helpful to her appearance. In the face of numerous community complaints, we attempted to prevent what seemed like Agnes’ inevitable incarceration.

    The first time we saw Agnes after her initiation into the world of Risperdal, she seemed pretty sluggish. Was the sparkle gone? No, but it was hardly distinguishable until the cloud of her most recent dose had lifted. She seemed calm, much less talkative than before, but Agnes also said “I feel better, less anxious.” Agnes still spends her days at work, this time in a sheltered work site, and has a wonderful new group home with more intensive staff supports than her previous home. Her phone calls and letters amped up again, but this time sent to people she has met in her numerous visits to several psychiatric wards around the state. We wanted Agnes to have friends and supports, but were nervous about who she was in contact with. Well, this nervousness led to the day that self-determination died. It died last week. I had to move Agnes’ belongings out of the basement of her former home, which she had been kicked out of.

    Three station-wagon-loads later, I faced the stacks of moldy boxes and garbage bags in my driveway. My father and stepmother looked at the mountain of the stuff of Agnes’ life and said, “We have to throw some of this out.” I felt conflicted. Where was Agnes in this choice? But looking at case after case of moldy strawberry Bubblicious chewing gum, bibles, and teeny-bopper magazines, I was swayed. So, during the process of sorting through Agnes’ stuff while she was in her latest psychiatric ward, my actions resulted in the death of self-determination. I didn’t realize it at the time, as I was not tuned in and it happened in an unsuspecting manner. I came across Agnes’ moldy address book—a wooden box filled to the brim with scraps of paper with names and numbers on it—many from her recent hospitalizations (she made notes of where she met people on the back of each scrap of paper). In a surge of parental-like paternalism and fear for her safety given the people that were, to me, “questionable” friends in Agnes’ life, I trashed the box.

    I immediately felt a bittersweet relief. At least she won’t be able to contact someone who might take advantage of her, I thought. That night, I imagined the wooden box, crunched by the garbage compressor at the dump, and I felt as though I had committed a huge violation. I can’t say that I thought long and hard about it before I placed it in the garbage bag. My gut said “protect her,” but the nagging guilt has not left. I feel as though I went against everything I was raised to do, and now, as an adult, was part of my philosophy of life. I spoke with my father and stepmother about it the next morning, both of whom encouraged me by saying, “You did the right thing.” I am not convinced, however. And I have not yet revealed this act of betrayal to Agnes, but she hasn’t asked about her addresses, either. I am skirting some sort of ethical zone.

    Now that Agnes and I are entering a new phase under the double-edged sword of sibling and guardian on my part, we navigate “the self-determination question” on a daily basis. I am constantly wrestling with the clear embrace of self-determination nurtured by my familial culture along with my new pseudo-parental role. When will be the day that self-determination dies again? I believe that the field of social work, especially in light of our commitment to self-determination, needs to really wrestle with the dark side of self-determination—the “living” of it in our personal and professional lives. It is only through reflecting on the impact of “living” self-determination in real life that we can truly enable our clients to do the same.

Liz Cameron is a pseudonym for an Assistant Professor of Social Work located in the Northeastern region of the United States.