Disability 101
5-6 Minute Read
Author: Becky Jayakumar, PharmD, BCIDP, BCPA
Purpose
To describe barriers to healthcare for those with disabilities, common misconceptions, and the responsibilities of providers.
Learning Objectives
Identify the challenges and barriers that individuals with disabilities experience in healthcare settings.
Recognize how ableism may affect individuals with disabilities when receiving healthcare.
Recall the responsibilities of the provider to the patient with a disability.
A disability is a physical or mental condition that limits a person’s movements, senses, or activities. In the United States, it is estimated that approximately 26% of the population have some type of disability.(1) Disability has always been and will always be part of human life. Moreover, disability is as complex and contextual as other facets of dimensions of human identity. People with disabilities constitute the nation’s largest minority group and the only open group of marginalized persons that anyone can become a member of at any time.
“Everyone will become disabled if they’re lucky enough. Aging is a privilege. Far too few of us get the opportunity to live to a ripe old age. And if you do get the opportunity, you will likely become disabled.” - Maria Town, president of the American Association of People with Disabilities.(2)
Barriers to Healthcare
People with disabilities face multiple barriers to good health. Generally, they have worse health outcomes, less access to adequate healthcare including preventative health services, and are more likely to engage in risky health behaviors, like physical inactivity and smoking.(3) The vast majority of these negative health outcomes are dependent on the person’s social and environmental circumstances.(3)
One of the most significant healthcare barriers is financial limitations due to low employment rates,(5) potential of subminimum wages (average pay was $3.34/hour in 2020),(6) limits on assets if receiving social security insurance based on disability (i.e., SSI recipients are allowed no more than $2,000 in assets),(7) and typically, low social security disability insurance payments among others.(8) The loss of income after the acquisition of a disability has a substantial direct effect on housing, transportation, social interactions, and personal relationships, which are all social determinants of health.(9)
Additionally, attitudinal barriers from providers including assumptions about quality of life, stigma, and implicit bias, contribute to worse health outcomes.(5,10,11,12) The WHO World Report on Disabilities found that people with disabilities were two times as likely to find providers skills and equipment inadequate, three times as likely to be denied care, and four times as likely to be mistreated by healthcare provider.(10) In a recent focus group, anonymous physicians described denying care, discharging patients for inaccurate rationale, or explicit bias toward those with disabilities.(11) Not surprisingly, those with disabilities are more likely to perceive that the provider fails to listen to their medical concerns, explain treatments in a way they understand, treat them with respect, spend sufficient time with them, or involve them in treatment decisions.(13) This perpetuation of inequitable care for people with disabilities is inconsistent with the mission of medicine.(11)
Unfortunately, financial and attitudinal barriers aren’t the only barriers that simply add insult to injury for those with disabilities. Communication barriers including lack of accessible formats (5,10,11), physical barriers like inaccessible medical equipment or physical spaces, and policy and programmatic barriers including a lack of longer or flexible appointment times are potential barriers to receiving adequate healthcare.(10,11) Despite these long-standing known and significant health disparities, the National Institute of Health (NIH) on Minority Health and Health Disparities only recently announced in September 2023 that they will support health disparities research for people with disabilities.(4)
Common Misconceptions
The majority of people assume the quality of life (QOL) for those with disabilities is lower than what the person with the disability reports.(14) This is exacerbated by providers that mischaracterize the QOL of people with disabilities.(15) In a 2021 survey, 82.4% of physicians stated that people with disabilities have a worse QOL.(16) When in fact, those with disabilities express that they have a good QOL Those who do report a reduction in QOL describe the cause to be due to a society not designed for or supportive of them rather than a direct effect of their disability.(17) Due to these assumptions, providers often focus on the difficulty of ability transitions rather than the establishment of new ability expectations and development of techniques, tools, or training to help in the ability transitions.(18)
Most individuals, including physicians, assume that the “normal” body is preferred over the seemingly abnormal bodily forms. Despite disability being a part of the diversity of human experience, the provider has distinct roles in establishing and responding to what is considered normal and abnormal. In a 2020 study, the majority of providers self-reported no explicit bias towards people with disabilities, but 83.6% of the respondents were implicitly biased.(19) Thus, these unconscious bias’s negatively affect patient-provider communications and relationships, assessment of treatment and rehabilitation programs by misaligning the priorities of care, and priority for research due to fostering an unreflective support of normalcy.(18)
“The medical profession looks at my body as a problem to be solved rather than a patient to be treated. The medical system is based on problem solving, looking at bodies as logic problems and conditions as things to be fixed, but not everything can be fixed.” – M. Leona Godin(20)
Frequently, there is an ableist conflation of disability with disease, illness, pain, suffering, and disadvantage; however, to have a disability is not automatically or necessarily to suffer, be in pain, or have a disease.(18) How often in clinical notes have you read things similar to “unfortunate individual”, “suffers from”, or “wheelchair bound” that imply tragedy, disease, or significant limitations? The implication of this terminology has the potential to negatively affect the treatment of the specific patient as well as profound social consequences with ill-conceived state and federal policies. When the provider is positioned as the expert on forms of life that they often have no lived experience, marginalization can be further exacerbated.
Responsibilities of Provider
Develop disability humility by learning about the culture, experiences, politics, and histories of disability.(18)
Recognize that the person with the disability is the expert of their own life and your knowledge about their disability will always be partial.(18)
Provide referrals to appropriate allied professionals to help in the transition of abilities to ensure effective and just medical practice.(18)
Communicate better with and about patients with disabilities by utilizing the concept of disability humility coupled with a simple, but effective framework of established communication competencies.(18,21)
Treat the patient with respect and empathy, focus on the patients’ goal, use effective listening skills, and enlist the patient in the development of the plan of care.(21,22)
Elevate the voice and concerns of those with disabilities.(18)
Case Example
Consider the following real case. Over the last two years, you have been progressively losing your peripheral and night vision. Through many diagnostic tests and evaluations, a thymoma is discovered to be the likely cause and you undergo a thoracotomy to remove the tumor. Despite the removal of the tumor, your vision loss continued. With some reductions in visual acuity, you decide to see an ophthalmologist rather than an optometrist considering your underlying eye condition. Luckily, the acuity issue is correctable with glasses or contacts, but you find out your retinal destruction has worsened. On the way out of the room, the ophthalmologist states “You’ve been handling this well. I would kill myself.”
Whether or not you see this as a poorly executed compliment, as it was intended, a medical professional stated that your medical condition was so terrible that they wouldn’t want to live.
How would you feel in this situation? How do you think this ophthalmologist’s communication could be improved?■
References
1. Centers for Disease Control and Prevention. Disability and Health Overview. Updated September 16, 2020. Accessed October 12, 2023. https://www.cdc.gov/ncbddd/disabilityandhealth/disability.html.
2. Master, M. Maria Town: “Everyone Will Become Disabled If They’re Lucky Enough.” Advocate. July 13, 2020. Accessed October 11, 2023.
3. Office of Disease Prevention and Health Promotion. Disability & Health. Healthy People 2020. Accessed October 12, 2023. https://wayback.archive-it.org/5774/20220413202458/https://www.healthypeople.gov/2020/topics-objectives/topic/disability-and-health
4. National Institute on Minority Health and Health Disparities. Minority Health and Health Disparities: Definitions and Parameters. Updated October 4, 2023. Accessed October 11, 2023. https://www.nimhd.nih.gov/about/strategic-plan/nih-strategic-plan-definitions-and-parameters.html
5. Centers for Disease Control and Prevention. Common barriers to participation experienced by people with disabilities. Updated September 16, 2020. Accessed October 12, 2023. https://www.cdc.gov/ncbddd/disabilityandhealth/disability-barriers.html.
6. U.S. Commission on Civil Rights. Subminimum wages: Impacts on the civil rights of people with disabilities. September 2020. https://www.usccr.gov/files/2020/2020-09-17-Subminimum-Wages-Report.pdf
7. Social Security Administration. SSI fact sheet. Accessed October 12, 2023. https://www.ssa.gov/pubs/EN-05-11002.pdf
8. Center on Budget and Policy Priorities. Chart Book: Social Security Disability Insurance. Updated February 12, 2021. Accessed October 12, 2023. https://www.cbpp.org/research/social-security/social-security-disability-insurance-0
9. Frier A, Barnett F, Devine S, Barker R. Understanding disability and the ‘social determinants of health’: how does disability affect peoples’ social determinants of health? Disability Rehabilitation. 2018;40(5):538-547. https://pubmed.ncbi.nlm.nih.gov/27927028/
10. World Health Organization. Disability and Health. Updated March 7, 2023. Accessed October 12, 2023. https://www.who.int/news-room/fact-sheets/detail/disability-and-health.
11. Lagu T, Haywood C, Reimold K, DeJong C, Sterling RW, Iezzoni LI. ‘I am not the doctor for you’: Physicians’ Attitudes About Caring for People with Disabilities. Health Affairs. 2022. 41(10):1387-95
12. Drainoni ML, Lee-Hood E, Tobias C, Bachman SS, Andrew J, Maisels L. Cross-Disability Experiences of Barriers to Health-Care Access: Consumer Perspectives. Journal of Disability Policy Studies. 2006;17(2):101-115. https://pubmed.ncbi.nlm.nih.gov/36190896/
13. Smith DL. Disparities in patient-physician communication for persons with a disability from the 2006 Medical Expediture Panel Survey. Disability Health Journal. 2009;2(4):206-15.
14. Barnes E. The minority Body: A theory of Disability. New York, NY: Oxford University Press; 2016.
15. Kothari S. Clinical (mis)judgments of quality of life after disability. Journal of Clinical Ethics. 2004; 15(4):300-7. https://pubmed.ncbi.nlm.nih.gov/15830558/
16. Iezzoni LI, Rao SR, Ressalam J, et al. Physcians’ perceptions of people with disability and their health care. Health Affairs. 2021;40(2):297-306.
17. World Health Organization. World Report on Disability 2011. 2011: 1 – 350.
18. Reynolds JM. Three things Clinicians Should Know About Disability. AMA Journal of Ethics. 2018;20(12):E1181-87. https://journalofethics.ama-assn.org/article/three-things-clinicians-should-know-about-disability/2018-12
19. VanPuymbrouck L, Friedman C, Feldner H. Explicit and implicit disability attitudes of healthcare providers. Rehabilitation Psychology. 2020; 65(2): 101 – 112.
20. M. Leona Godin. There Plant Eyes: A personal and Cultural History of Blindness. Vintage. 2022:1-352
21. Rider EA, Keefer CH. Communication skills competencies: definitions and a teaching toolbox. Medical Education. 2006;40(7):624-29.
22. Hearn SL, Hearn PJ. Working with people with disabilities: An interactive video/lecture session for first- and second-year medical students. MedEdPortal. 2020; 16:10913