Portal de Periódicos da CAPES

Disability Stigma in Rehabilitation

2016; Wiley; Volume: 8; Issue: 10 Linguagem: Inglês

10.1016/j.pmrj.2016.08.028

1934-1563

Carol Gill, Shubhra Mukherjee, Rosemarie Garland‐Thomson, Debjani Mukherjee,

Disability Rights and Representation

In the 26 years since the Americans with Disabilities Act was passed, we have seen changes in access, knowledge, and a move towards equity for people with disabilities; however, societal attitudes and implicit and explicit biases continue to impact the way that people with disabilities are viewed, represented, and treated. A simple definition of stigma from Merriam Webster is "a set of negative and often unfair beliefs that a society or group of people have about something" 1. In his classic book, Stigma: On the Management of a Spoiled Identity 2, Erving Goffman, a sociologist by training, described and delineated the concept of stigma and how it impacts society. He described complex phenomena that include devaluation and marginalization. Although critiqued and refined over the years, the concept of stigma that Goffman described is a robust and important one to consider. Stigma, and more specifically disability stigma, is part of the social, psychological and ethical context in which physical medicine and rehabilitation (PM&R) clinicians practice. This column will explore the concept of disability stigma and its impact on the practice of rehabilitation medicine. This idea for a column is based in large part on a course that I teach to undergraduates at Northwestern University called "Disability and Global Health," in which we define, discuss, and consider disability stigma in various contexts around the world. We also discuss disability rights and disability ethics in the United States. One of the first reading assignments for the course is an article by Lerita Coleman, "Stigma—an enigma demystified" 3. Coleman writes that stigma has at least 3 components: fear, stigma's primary affective component; stereotyping, [stigma's] primary cognitive component; and social control, [stigma's] primary behavioral component. We consider the complexities of stigma and apply it to the settings that we are studying around the world, as well as the local settings and contexts in which students live and learn. For example, in some Asian cultures, disability stigma includes the concept of disability being caused by karmic retribution or disability being associated with uselessness. In general, deeply held beliefs and common cultural practices around the world can perpetuate stigma in various contexts. Link and Phelan 4 further elaborate and describe the process and components of stigma. In the first component, people distinguish and label human differences. In the second, dominant cultural beliefs link labeled persons to undesirable characteristics—to negative stereotypes. In the third, labeled persons are placed in distinct categories so as to accomplish some degree of separation of "us" from "them." In the fourth, labeled persons experience status loss and discrimination that lead to unequal outcomes. Notably, the act of stigmatizing can be disrupted at any of these levels. For example, negative stereotypes can be acknowledged and dispelled, false dichotomies of "us" versus "them" can be undermined, nondiscrimination can be advocated for, and social justice concerns can take precedence. It is an open question, however, how these potential disruptions translate into the practice of PM&R? I have invited 3 columnists to reflect upon the following prompt: What implications does disability stigma have for the practice of PM&R? Do cultural notions of stigma held by patients, families and clinicians affect clinical care and outcomes? What guidance can you give clinicians for recognizing, addressing, and/or ameliorating disability stigma? In the first essay, Dr Carol Gill, a psychologist and professor of Disability and Human Development at the University of Illinois at Chicago, writes about stigma resistance and the role of rehabilitation in addressing stigma. Dr Shubhra Mukherjee, a pediatric physiatrist and fellowship director at the Rehabilitation Institute of Chicago and Northwestern University Feinberg School of Medicine, then reflects on disability stigma in pediatric rehabilitation and how it impacts her work. The third columnist, Dr Rosemarie Garland-Thomson, a professor of English and Bioethics at Emory University, proposes disability cultural competence as an intervention in disrupting disability stigma. All 3 weave together their own personal experiences and observations and give us pause to consider how our own life experiences, educational training, and emotional reactions impact our practice as health care providers. As always, I welcome comments on this column and ideas for upcoming columns at dmukherjee@ric.org. Carol J. Gill, PhD Department of Disability and Human Development, University of Illinois at Chicago Two individuals who use wheelchairs—I will call them Harriet and Harry—married after graduate school. They raised a child, had long professional careers, and have lived more than 20 years in a home they remodeled for both accessibility and aesthetic appeal. On a beautiful spring morning, they celebrated the end of winter by wheeling to a neighborhood shopping center. After visiting several stores, they arranged their bulging shopping bags securely and headed toward home, remarking on how enjoyable the trip had been. While they waited for the traffic light to change at a major intersection, a woman riding a bicycle pulled up and joined the wait. Noticing a sports team logo on Harry's cap, the cyclist briefly chatted with the couple about the team's chances for a championship. After a pause, the cyclist asked an unexpected question: "Did you two break out of some place today?" Stunned, the couple was temporarily speechless. Undaunted, the cyclist assured them that she would escort them across the street. The light changed and as Harry and Harriet approached the other side of the street, the cyclist sped off without a word. Afterward, the couple parsed the incident, trying to make sense of it. Did the cyclist assume that they live in an institution? Did she see them as incapable of crossing the street without supervision? Was it impossible for her to view them simply as fellow neighborhood residents much like herself? The only conclusion on which they agreed was that the morning had ended less enjoyably than it had begun. Disability stigma had swept them off guard. A paradox of disability is that it is widely known but rarely understood. The complexity of disability as a phenomenon and the layers of elements that interact to produce the experience of disability are underrecognized by almost everyone, including many people with disabilities, their family members, health professionals, and, certainly, most of the public. At the personal level, disability involves the way individual bodies or minds function and, often, physical appearance, eg, limping, facial asymmetry, canes, prosthetics. This is what most people envision when they think of the word "disability." Although many of us who became disabled early in life regard our embodied differences as "normal" for us, disability acquired after many years of living "typically" challenges our adaptivity. Still, according to disability scholars and activists, this personal, embodied aspect of disability is only the tip of the iceberg; most of the problems of disability, they assert, occur at other levels. At the interpersonal level, persons with disabilities experience problems in the way others relate to them and the roles they get to play in relationships. At the local environmental level, they encounter structural and programmatic barriers to participation in the community. At the broader societal level, they confront systemic social devaluation and its byproducts, eg, poverty, inferior education, unemployment, health disparities, abuse, denial of sexual expression, social rejection. At what level does stigma occur? I believe stigma operates at all levels and is ingrained and powerful. I base this answer on listening to the life stories of persons with disabilities during 35 years of work as a clinical psychologist, rehabilitation psychology director, and disability studies researcher/professor and on my own experience with physical disability. Over those years, Americans with disabilities have won many policy and legal battles and, consequently, are more engaged in mainstream life than ever, but the fear, stereotypes, and exclusion that characterized disability stigma abound. Even veteran high achievers with disabilities like Harriet and Harry can experience the demoralizing impact of stigma at any time. Sociologist Erving Goffman theorized that stigma results in "spoiled identity" 1. A person's very sense of self is eroded by repeated social devaluation. Race scholars have referred to this absorption of social disparagement as "internalized oppression" 2. To reduce the chance of negative social treatment, stigmatized individuals feel driven to hide parts of themselves that are devalued and to avoid association with similarly socially devalued persons. Consequently, many stigmatized persons live in an emotionally exhausting state of estrangement from themselves and peers. Encounters with disability stigma knock the wind out of people with disabilities, threatening to reverse their progress in building a good life. That is why the cultivation of stigma resistance should be a mainstay in rehabilitation programs where people go to understand disability and to strengthen their skills in living. The experience of other socially oppressed groups demonstrates that one's ability to surmount social devaluation does not develop on its own. In most marginalized communities, useful strategies are communicated by family members, elders, neighbors, and indigenous schools, churches, and organizations. Unfortunately, most individuals with disabilities are isolated from the disability community. Their family members, neighbors, respected leaders, and local organizations are likely to be entrenched in the nondisabled world. Contributing to this isolation is the prevailing misconception that disability is exclusively a problem in the individual. Interventions, including rehabilitation therapies, focus on fixing the person rather than supporting the ability of persons to deal with the dysfunctional dynamics surrounding them. It is a recipe for postdischarge failure, not to mention wasted time and ineffective use of resources. As I write this, people with disabilities are uniting nationally in a massive act of stigma resistance. They are protesting the recently released film, Me Before You, about a fictional character who acquires a spinal cord injury and, despite substantial resources and support, chooses to die rather than live as a disabled man 5. The message that disability makes life hopeless and justifies suicide is a repeated theme in popular film. Launching a counter response on the internet, in news interviews, and on picket lines at movie theaters, protesters have shared their own stories of having felt suicidal postdisability until discovering a community of people with disabilities living as fully as anyone else. They reproach filmmakers for promoting negative stereotypes instead of accurate images of people with disabilities leading meaningful lives. People with disabilities need to be armed against the destructive, sometimes lethal, power of stigma. They and their families need to reimagine disability beyond the level of personal deficiency. All people need accurate images to counter the continuing prevalence of anti-disability bias so they can see persons like Harriet and Harry as neighbors, not escapees from custodial care. It is not clear if the film industry will ever respond to this mandate, but rehabilitation programs can and must. Shubhra (Sue) Mukherjee, MD, FRCPC Rehabilitation Institute of Chicago and Northwestern University Feinberg School of Medicine A typical conversation I have had, setting: anywhere: Q: "What do you do for a living?" Me: "I work in neuro-rehab with kids, as a rehab-medicine physician." Q: "Awww. That must be so hard, you're a saint!" This exchange highlights some attitudes and aspects of disability stigma that can spread to those of us working in pediatric rehabilitation. My response is usually a variation of, "Actually, kids are fun, they like to play, and they don't feel sorry for themselves. They have big dreams like any other kids, my work is very enjoyable!" I am left wondering why these negative generalizations are so common. I have had similar conversations with people who are in medicine. I specifically recall a favorite surgery rotation mentor during internship in Canada, who asked why (in not so many words) I would choose such an undesirable, un-glamorous specialty. Despite Paralympics and high-profile, high-achieving people with disabilities, there remains much to do with regards to educating the broader community about what rehabilitation is, and about the desire of people with disabilities to be well integrated and achieve big dreams in their lives. The stigma of disability is noted in my day-to-day practice, exemplified in situations such as the ones below: A non-English speaking mother came in with her pre-teen daughter, who has preschool level cognitive ability, can walk with some difficulty, and is affectionate, nonverbal, sometimes agitated, distractible, and needs to be laid down to change her diaper (incontinence garment) on a flat surface. Her mother prefers to take her out in a stroller as it is otherwise difficult to get her to places, as she is as tall as her mother. The mother was upset with her social supports. The father worked long hours, and although she had a large extended family, they rarely made efforts to include them in family outings or check in on them. The mother was committed to being her daughter's caregiver but felt unwelcome even within their extended family. She had multiple signs of stress. These signs of stress are found commonly in caregivers. Parents of children with physical disabilities and parents of children with autism are known to have significantly greater levels of stress hormones, depression, and anxiety than parents of typically developing children 1, 2. This may be due to a mix of concerns about their children's health and care but likely also relate to fear about stigma and how the rest of the world will care for and accept their children. The impact of disability stigma and societal attitudes is often not addressed in studies focusing on medical variables or individual level factors and outcomes. In another case, a father came to see me with his adorable, very bright, verbal, and social toddler with Erb palsy. She had a good recovery of arm function but with mild residual internally rotated shoulder posture; he wanted to discuss surgery to make her arm look more normal. He indicated his fear that she wouldn't be able to "marry a doctor, with her arm looking like that." He was surprised when we suggested perhaps she could become a doctor. Assumptions about life with a disability are often held by family members and patients themselves. More than one person I know has had an abnormal finding on a prenatal ultrasound scan and felt it was expected that they would choose to have an abortion because of a fetus with Down syndrome, spina bifida, or even repairable findings such as cleft lip; however, we have also had parents who have had a prenatal diagnosis contact our spina bifida clinic to learn more about what life with spina bifida is like and then continue the pregnancy. Our perceived wholeness as a person is a reflection of our importance within our family, community and to society. Perhaps the wholeness of our specialty as being less-than, or unglamorous, goes along with less than whole integration of people with disabilities. Are people with disabilities thought to be less than whole when seen by those who do not understand them 3? The answer is unfortunately often, "Yes." Even in cases of significant neurologic disability or technology dependence, a child with a disability can reveal in us and experience patience, love and allow for mindfulness in times of stress, in our achievement-oriented hectic world. And they can also reach achievements beyond what society expects of them. This brings me inspiration, as does the love and patience of the families and communities that help them thrive. Mainstreaming of children with disabilities in schools has increased comfort of typical children to interact with people with disabilities. It may result in less opportunity for disabled peer support at school, but it can increase access to clubs and activities to foster various interests and skills otherwise not afforded. Children with and without disabilities may bond over shared experiences or interests, developing friendships and understanding. Some families approach their child's disability from a different framework, with acceptance. As I write this, I'm returning from the Hunter's Hope symposium, a gathering of families with children with leukodystrophies, along with clinicians and researchers. I rode the shuttle to the hotel with a family who also was attending. They arrived with suction equipment, respiratory hygiene vest, oxygen concentrator, a wheelchair, tube feed pump and formula, suitcases, and 2 children, one being affected, who smiled as mom massaged her hair, and clearly enjoyed snuggling. The love and acceptance between the 50-some families who traveled from all over North America to attend was truly heartwarming. This was summed up by a request verbalized by an organizer of the event: "Please bring your kids, suction equipment, oxygen, and all your stuff to the sessions. We want it! Those of us who don't hear those noises anymore, miss it." It is clear that the families there, who still attend even after they have lost a child to the condition, still rejoice in remembrance of their affected children. They gather to help improve care, and are supporting growing a consortium of clinics towards improved treatment and cure. This group is one of many with similar goals. Fear of facing disabilities, such as these children and their families face, may make us want to keep some distance, even as clinicians. Getting to know these kids and what they bring to their families, and how they ignite passion to be better, or to help prevent and cure disease for others, while accepting their situations, can result in more awe and acceptance by all of us. They have lost fear and have moved on to acceptance and love. And that acceptance is the exact opposite of stigma. Rosemarie Garland-Thomson, PhD Department of English & Center for Ethics, Emory University In 2013 I reread Erving Goffman's Stigma: Notes on the Management of Spoiled Identity 1 on the occasion of the book's 50th anniversary. Facing Stigma again was as unsettling for me as it was the first time I read it as a graduate student. The book's effect on me is something like witnessing road kill: the shock of seeing a thing familiar and unremarkable splayed open in a disarray, exposing a reeking but somehow affirming truth about life. Goffman's little book brutally illuminated an interpersonal dynamic I had sensed my whole life. I saw myself in Stigma in ways that I had sensed others saw me and that I was indeed bonded by stigma to what Goffman so quaintly called my "own kind." I am a Professor of English and Bioethics with a focus on interdisciplinary critical disability studies. And I'm a person with a disability working toward including that perspective in academic approaches to thinking about disability. Among my contributions are 2 books: Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature 2 and Staring: How We Look 3 that both speak to the stigma and cultural aspects that this column is exploring. In my recent work in bioethics, I am struck by the ways in which disability continues to be represented, discussed and debated. And importantly, I am also struck by how there are large knowledge gaps and the absence of voices with lived experience of disability. As I consider how health care professionals can best serve people with (and without) disabilities, developing disability cultural competence should be a critical focus. Most Americans don't know how to be disabled, and yet disability is fundamental to being human. The human lifecycle and our encounters with the environment as we move through life transform our bodies and minds in ways we think of as disabilities. The human variations we think of as disabilities are a part of every family and will enter into every life sooner or later. Indeed, people with disabilities are the largest minority group in the United States and a growing constituency as the American population ages and new disability categories such as neurodiversity, psychiatric disabilities, and learning disabilities emerge and grow. Despite this reality, Americans remain unprepared for disability. We get little information about living with disabilities and few opportunities to practice being disabled. More importantly, what we learn about life with a disability is relentlessly grim. Health care providers have a narrow view of disability. Medicine and health care focus on normalizing us, eliminating disability. The limitation of medicine's view of disability is that it is seen only in the context of something to be treated, or fixed. Americans need to learn how to be disabled, how to achieve well-being and good life quality as disabled people. For us to live effectively in a world not yet fully built for disabled people, our health care providers need to develop a robust disability cultural competence. Moreover, patients—which includes all of us potentially—need to develop disability cultural competence as well. Disability identity and culture are foreign territories for most patients. Disability is an experience, identity, and culture that people generally enter unexpectedly and unwillingly. Entering into disability requires more than medical treatment and rehabilitation; becoming disabled requires adjusting to new functioning, appearance, and social status. It requires learning how to live effectively as a person with altered function, not just living as a disabled person trying to become nondisabled. The constituency, then, for disability cultural competence education extends from health care providers to patients and thus to all people. This is what distinguishes disability cultural competence from other cultural competence medical training components—it is capacious in both content and user base. Disability cultural competence is a form of what Jonathan Metzl 4 and others call "structural competency" in that it focuses attention on how social and cultural structures influence health outcomes and shape personhood at levels above individual interactions. It aims, most broadly, to strengthen the cultural, political, and institutional climate in which people with disabilities can most effectively flourish as they are. Disability cultural competence expands the scope and content of rehabilitation programs, clinical treatment, medical humanities, and disability services as we know them. This is more than sensitivity to language and adjustments in activities of daily living; it is using the world effectively, maintaining self dignity, exercising self-determination, cultivating resilience, recognizing and requesting accommodations, using accessible technology, finding community, maintaining successful relationships—all as a person living with disability. My review of the sparse literature on disability cultural competence finds that the predominant understanding of disability as a deficit in bioethics and health care reflects a thin understanding of disability culture and disability equity. What is needed, then, is an applied disability bioethics that would develop the concept of accommodating rather than eliminating disability into a capacious yet specific set of principles, practices, and policies that can affect biomedical decision-making. To this end, I am conceptualizing and proposing a disability bioethics that would produce disability cultural competence for all. Disability bioethics, as I define it, is the promotion and development of bioethical, cultural, technological, and legal supports for people living with disabilities as they are. Its primary aim is to develop disability cultural competence for health care workers, patients and families, institutions and leadership, and the general public as consumers of biomedicine. This disability cultural competence for all, developed through and promoted by disability bioethics, would focus on disability culture, history, and technology to augment the medical and rehabilitation environments that now address disability. A disability bioethics initiative would produce research, policy papers, events, education, curation, and support fellows in disability bioethics. Primary leadership in disability bioethics will be from expert communities in disability bioethics and from bioethicists with a subject expertise in disability culture. Leaders would be people with a high degree of disability cultural proficiency. The Initiative would promote and explore solutions for access, opportunities, culture, community, world building, and inclusion of disabled people. Disability bioethics involves four interconnected environments: 1. Biomedical decision-making about disability, 2. Disability culture and arts, 3. Accessible technology and design, 4. Disability legislation and social justice. Health care providers can play a large role in developing and promoting disability bioethics. For physicians working in PM&R to develop disability cultural competence, they would enter the field from their training in high school, undergraduate and medical education with a complex understanding of disability. They would know the limitations of the medical and other models, and acknowledge the knowledge gaps and seek to fill them. They would engage with disability arts and culture and learn about disability rights and identity. Together, disabled and nondisabled people alike, would work towards making our shared world more accessible and equitable.