As stated in Brueggemann et al’s Becoming Visible: Lessons in Disability, “If we all live long enough, we’ll all be disabled. We are all TABs – temporarily able-bodied.”1

The first time I read those words, I scoffed at the idea. At the time, I was wrestling with accepting the new reality of being disabled, and the premise that most people would eventually have a disability felt inconceivable. However, the more I became aware of disability culture, the more I was also able to recognize my own internalized ableism. Despite my initial resistance, as I continued along this journey, I began to understand more deeply how true these words really were.

The CDC describes as “any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions).” There are many other definitions, but I find that this one captures a wide range of conditions, including mental illnesses, birth-related conditions, as well as those related to injury and chronic illnesses which may be progressive, static, or recurrent in nature.2

As medical providers, highly educated and trained to treat the various conditions and illnesses causing disability, we are rarely taught to view our patients with a more holistic understanding of disability. As physicians, we are never taught about the intricacies of navigating the systems of healthcare, let alone the ableism embedded in those systems. Furthermore, most healthcare providers lack the knowledge, or even the awareness, of the need to engage with patients in a way that truly centers the needs of persons with disabilities.

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Ableism As a Form of Oppression: The Language of Disabilities

People-First Language

“Person-first language” is used to describe the concept that everyone should have the opportunity to choose the language used to describe their identities and disability. Here, I will use Persons with Disabilities (PWD) as an umbrella to describe individuals with chronic conditions and/or disabilities. Language is crucially important, and this is vitally true when you consider the Disabled community, who throughout history have been the target of a myriad of demeaning and derogatory labels. At the same time, it is crucial to recognize that 1) having a chronic illness and having a disability are not mutually inclusive and, 2) not all will self-identify as being “disabled.”3

Persons with Disabilities Constitute the Largest Minority Group

According to the WHO, Persons with Disabilities are the largest and most diverse minority group on earth, with individuals representing a multitude of gender, ethnic, sexual, racial, and class identities.4 The conditions of PWD exist along a continuum and are not a dichotomy of non-disabled vs. disabled, and their experiences are equally as diverse and dynamic. Depending on several factors, such as age of onset, comorbidities, support systems, and access to care, a person’s disability may be dynamic in its presentation from year to year or even day to day. Therefore, two individuals with the same disability may have significantly different impairments, resulting in distinct needs. At times, a person’s disability may even be “invisible,” or not easily recognized by those unaware of its presence.

The concept of a dynamic presentation of disability is recognized in the “Spoon Theory,” developed by writer and Lupus advocate Christine Miserandino. The concept details that PWD have a limited number of “spoons,” representing allotments of energy to operate daily. With each task completed during the day, such as fixing a meal or driving, spoons are depleted. Compared to a non-disabled person, PWD’s limited number of spoons fluctuates, and can be exhausted before they have completed their day, often causing significant impairment.  Many PDW who identify with Miserandino’s metaphor call themselves “spoonies.”4

In American society, PWD have often been the object of scorn, exploitation, and abuse, justified under the notion that they are “feeble-minded,” burdensome, and a blemish on society. As a result, PWD have suffered through atrocities such as institutionalization, exhibition in circuses, and the eugenics movement.5 The recognized term that encompasses the sentiment and source of these beliefs and acts is “ableism,” defined as discrimination or prejudice against individuals with disabilities.6 Ableism, like other forms of oppression, exists at various levels – interpersonally, institutionally, and systemically, each with their own harms.

The Disability Rights Movement

Each of these became the target of the Disability Rights Movement, which gained momentum on the fervor of the Civil Rights Movement. Disability rights advocates recognized the strength in collaboration with other movements and the benefits of confronting stereotypes, creating new images of PWD, grassroots efforts, and national mobilization. Out of these efforts came legal wins such as the Education for All Handicapped Children Act in 1975, later renamed the Individuals with Disabilities Education Act (IDEA), which provided public education for children with disabilities; as well as the Americans with Disabilities Act (ADA), which provided PDW employment protection and public accommodations.5

The Disability Justice Framework

Despite all its historic and crucial wins, as with most movements, the Disability Rights Movement has not been without criticism. One major criticism of the movement has been its centering of the experiences of white disabled people, and those with physical impairments, over the experiences and at the expense of all others. Thus around 2005, a group of queer and minority activists fashioned the framework of “Disability Justice,” centering intersectionality, describing how ableism interacts with other systems of oppression, including racism, transphobia, and sexism, and creates unique challenges for those PWD who live at those intersections of marginalized identities.7

The Disability Justice movement has 10 core principles which, in general, prioritize:

  • empowering leadership among PWD, especially among those with other minority identities
  • interdependence and centering of care in communities
  • disruption of power hierarchies.8

The Psychiatrist’s Power Hierarchy and the Disabled Community

One power hierarchy that has resulted in significant harm to the Disabled community is that of the physician and patient. Particularly in the field of psychiatry, this hierarchy has served as the poster child of medical paternalism, in which the provider knows best, and the patient has no autonomy.9 This tiering served as the background of the eugenics movement of the 20th century. Healthcare providers became the perpetrators of acts of violence and discrimination against PWD, including sterilization, institutionalization, and denial of treatment, particularly of women and people of color, all under socially normalized ableist premises.10

Still today, healthcare operates under the ableist guise that “normal is best.”9 Across decades, clinicians have been found to consistently report quality life of PWD lower than what individuals self-report.11,12

This ableism unduly influences healthcare workers’ attitudes and biases towards PWD, resulting in them having poor communication with and even being uncomfortable providing care to the Disabled community.13 Even terms to describe this phenomenon, such as the “disability paradox,” suggest that to have a disability and live a fulfilling life are at odds. As a result, it becomes simple for medical providers to attribute the numerous health disparities experienced by PWD as unavoidable comorbidities and secondary conditions. Medical education does not provide most clinicians with appropriate skills and knowledge to adequately care for PWD, which both patients and clinicians report.14 Even though accrediting bodies for both medical school and graduate medical education state the importance of caring for these patients, there is no standardized disability curriculum to ensure adequate delivery of care.15

Physical Barriers for People with Disabilities

Outside of the biases and attitudes of healthcare workers, there are other healthcare barriers that cause harm to Persons with Disabilities. Physical barriers, including inaccessible parking or mammography units unequipped for persons using wheelchairs, and lack of access to clinics and hospitals due to costs and transportation, particularly in rural areas, leave PWD unable to receive care. Together, these obstacles result in PWD being more likely to report being treated poorly, receiving substandard care, or having been denied care compared to people without disabilities – all contributing to their undue burden of preventable mortality and morbidity.2,14

The COVID-19 pandemic has provided a reflection on the innate ableism ingrained into health policies, practices, and practitioners themselves. Last summer, advocates and headlines captured the story of Michael Hickson, a 46-year-old father of five who was denied treatment reportedly because he had no quality of life due to various chronic conditions.16 Similar concerns were raised by advocates as triage healthcare allocation policies arose, with allocation guidelines excluding PWD such as those with intellectual disabilities or chronic medical illnesses without significant data that showed that PWD were less likely to survive than others without disabilities.9,17

Disability Humility: The Role of Mental Health Care Clinicians

Many people experience uneasiness, guilt, shame, or other negative feelings related to their participation in ableist systems. However, I urge you – as mental health care clinicians – to mobilize discomfort into action. The medical community must acknowledge and seek to rectify the role that it has played in creating and sustaining structural violence against those in the Disabled community, and there are several steps that clinicians, including psychiatrists, can take to provide better care to PWD and advocate for the Disabled community.

The first is a commitment to “disability humility,” a concept that requires educating oneself about the complex medical, social, and political interplay of disability from historical and current perspectives of PWD, while understanding that one will never become the “expert” and using that understanding as a starting point.18

Next, in line with the principles of disability justice, clinicians should de-center themselves by recognizing PWD as the authorities on disability and actively involving the perspectives of PWD in conversations and decision-making about disability.

Lastly, I would be remiss to ignore the growing number of clinicians with disabilities and unique challenges faced in the navigation of medical education and career, especially as a queer, Black, female, Disabled doctor with multiple chronic conditions.20,21 We should allow PWD to teach us to advocate for ourselves.9,19 Persons with Disabilities and other marginalized groups have demonstrated how to challenge norms and demand change, which is more important than ever for healthcare workers to sustain themselves and safeguard the healing of ourselves and our patients.

More from this collection on vicarious racism, racial targeting in psychiatry, and gender identity in the BIPOC community; plus, a message from our guest editors.

References
Last Updated: Jul 28, 2021