Disability Stigma and Your Patients

FACTSHEET

or people with disabilities, stigma ■ Stereotyping – People with disabilities can be a major barrier to may be presumed to be helpless, participation. Stigmatizing attitudes unable to care for themselves, or unable F to make their own decisions. People about disabilities can also affect relationships between patients and with one disability, such as a speech providers. However, health care providers impairment, may be presumed to have can be allies with their patients and help other disabilities they don’t have, such reduce the impact of stigma. as an intellectual disability. ■ Discrimination – People with What Is Disability Stigma? disabilities may be denied jobs, housing, The word stigma comes from the Greek or other opportunities due to false word for “mark.” Generally, stigma is a assumptions or stereotypes about negative set of beliefs about people with disabilities. This still occurs today, specific characteristics. For example, ethnic despite disability rights laws such as the or sexual minorities, or people with unusual Americans with Disabilities Act (ADA). facial appearance may encounter stigma. ■ Condescension – People with disabilities may be coddled or over- People with disabilities have been protected due to perceptions of their stigmatized throughout history. In many helplessness. cultures, disability has been associated with curses, disease, dependence, and ■ Blaming – People may be blamed for helplessness. Disability stigma can play out their disability, or accused of using their in a number of ways, including: disability to gain unfair benefits. ■ Social Avoidance – People with ■ Internalization – People with disabilities disabilities may be left out of social may themselves adopt negative beliefs activities, or they may find that friends about their disability and feel ashamed become more distant after they develop or embarrassed about it. a disability. People may be hesitant to ■ Hate Crimes and Violence – People make eye contact or start a with disabilities may be targeted in hate conversation with someone who has a crimes. They are more likely to be visible disability. victims of physical or sexual violence than people without disabilities.

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AGING WELL WITH A PHYSICAL DISABILITY FACTSHEET SERIES

How Can Disability Stigma Affect participation. For example, a person with Your Relationship with Your a mobility impairment may choose to use Patients? a wheelchair instead of a walker if the wheelchair would allow him or her to People with disabilities may manage their travel to work or family activities without condition in ways that guard against being fatigue. stigmatized. In addition, people with ■ Need for Respect – Your patients may disabilities may be especially sensitive to be especially sensitive to your attitude signs of possible stigmatizing from their about their disability. Building a providers. collaborative partnership with your Some issues related to stigma that may patient built on trust and respect arise include: communicates your support for the patient as a whole person. ■ Concealment – If possible, some people may choose to conceal their Tips for Respectful, Stigma-free disability in public in order to minimize stigma. As a result, they may be Interactions reluctant to use assistive devices, such Establish Respectful Communication as mobility devices or hearing aids, or to tell others about their diagnosis. They ■ Do speak directly to your patient, even if may also forgo some medical services. he or she has a companion or interpreter in the room. Make eye contact with the ■ Disability Pride – On the other hand, patient, not the companion. some people express pride and a positive identity around their disability as ■ Do use ordinary language. It’s OK to say a way to counteract stigma. These “see you later” to a patient who is blind, individuals may wish to join groups of or to talk about going for a walk with a people who share their disability, where patient who is non-ambulatory. Using it is no longer stigmatized. They may ordinary expressions signals that you also opt against medical treatment see your patients as full members of intended to “cure” their disability their community. because they have developed a positive ■ Do ask patients with speech identity around the condition. impairments how they prefer to ■ Social Integration – Stigma is social in communicate. Some patients may write nature and may interfere with social or type to communicate if they have integration. In contrast to impaired speech, for example, or they “concealment,” people may choose to may have established yes/no signals. make their disability more evident in ■ Do use age appropriate language and order to improve their options for social tone with adult patients, and assume

The contents of this factsheet were developed under a grant from National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) grant (90RT5023). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this factsheet do not necessarily represent the policy of NIDILRR, ACL, HHS, and you should not assume endorsement by the Federal Government. © Copyright 2016. University of Washington, Healthy Aging RRTC. All Rights Reserved.

AGING WELL WITH A PHYSICAL DISABILITY FACTSHEET SERIES

that a patient with a disability will without asking for consent. For patients understand basic instructions unless you with some physical conditions, have a clear indication otherwise. inappropriate touch can cause pain or interfere with balance. For others, ■ Don’t interrupt or rush a patient who unwanted touch can cause anxiety. communicates slowly because of a Asking for consent respects the patient’s speech impairment. bodily autonomy. ■ Don’t guess what a patient is saying. If ■ Don’t handle a patient’s mobility device you don’t understand the without consent. communication, ask for clarification. Respect Disability Identity and Culture Respect Patient Privacy and Autonomy ■ Do respect a patient’s choice to downplay or highlight their disability in ■ Do provide written materials in an particular settings. electronic format when possible, for patients with visual impairments and ■ Do introduce your patients to disability those who have difficulty with support groups. Organizations like the handwriting or manipulating print National Multiple Sclerosis Society or the materials. A patient can independently United Spinal Association may have fill out an electronic form in advance of local chapters in your area. Your local an appointment. Provide medical record independent living center may also have information, treatment plans, and resources. instructions in a digital format when requested. ■ Don’t use negative words to describe disabilities. Words such as “tragedy” or ■ Do ensure that your office building and toilets are accessible to people using “suffering” can convey a stigmatizing mobility aids such as walkers and view of disability to your patients. wheelchairs, so that they can navigate Patients are not “confined to wheel chairs,” but rather use wheelchairs. the space independently. ■ Do ensure that your office practice is ■ Don’t fall into the trap of “golden rule accessible. For example, your patients thinking.” This is imagining how you with disabilities should be able to get would personally feel with a disability as weighed, use the exam tables, and a way to infer how your patients feel. access radiological exams. Disability is a complex experience that differs from person to person and ■ Do ask a patient the best way to provide changes over time. Listen to your physical assistance if it is needed. patients to discover how you can be their ■ Don’t touch, pull or grab a patient’s body best ally.

AGING WELL WITH A PHYSICAL DISABILITY FACTSHEET SERIES

Additional Resources: Authorship: “Disability Stigma and Your Patients” was Society for Disability Studies: developed by Arielle Silverman, PhD, and published by www.disstudies.org the University of Washington Aging RRTC. Content is Disability law and accommodations in based on research evidence and/or professional health care: http://adata.org consensus. List of national disability advocacy and Disclaimer: This information is not meant to replace support organizations: the advice from a medical professional. You should www.ncdj.org/resources/organizations/ consult your health care provider regarding specific medical concerns or treatment. Alliance for Disability in Health Care Suggested attribution: University of Washington. Education: www.adhce.org (2016). Disability Stigma and Your Patients [Factsheet]. References: Aging Well with a Physical Disability Factsheet Series. Healthy Aging & Physical Disability RRTC, Eddey, G. E. & Robey, K. L. (2005). http://agerrtc.washington.edu Considering the culture of disability in cultural competence education. Academic Medicine, 80, 706-712.

Goffman, E. (1963). Stigma: Notes on the Management of Spoiled Identity. New York: Simon and Schuster.

Morris, M. A., Yorkston, K. & Clayman, M. L. (2014). Improving communication in the primary care setting: Perspectives of patients with speech disabilities. Patient, 7, 397-401. Olkin, R. (1999). What Psychotherapists Should Know About Disability. New York: Guilford Press.