Structural Ableism: How the Healthcare System Fails People with Disabilities

According to the World Health Organization, there are 1.3 billion people with disabilities in the world today. People with disabilities are also more likely to be discriminated against; 1 in 4 U.S. adults living with a disability reports discrimination.

Unfortunately, it is not uncommon for people with disabilities to have their rights and dignity stripped away through abhorrent experiences while accessing or attempting to access healthcare services. Various studies have shown that people with disabilities experience worse health outcomes than non-disabled individuals in terms of premature mortality, increased morbidity, and limitations in functioning.

While all humans need access to health services, people with disabilities are often faced with ableism in healthcare. Ableism is a social devaluation of people with disabilities on account of their disabilities. In a healthcare setting, ableism occurs when a person with a disability experiences discrimination, bias, or prejudice from a healthcare provider, and doesn’t have their health concerns properly addressed.

What’s Structural Ableism?

Structural ableism is a system of historical or temporary policies, institutions, and societal norms and practices that devalue and disadvantage individuals who are disabled, neurodivergent, chronically ill, and/or living with mental illness.

Structural ableism denies people with disabilities equal access to social resources and to disability-competent and affirming health services, control over whether their experiences are listened to or believed, autonomy over how their needs are represented and responded to, and justice when they are exposed to harm, discrimination, and violence.

Structural ableism has a direct relation to the poorer health outcomes people with disabilities experience in comparison to people without disabilities.

Personal Experience

As the wife and caregiver of a disabled veteran for over a decade, I have had a front-row seat to witnessing the debilitating effects of structural ableism faced by my husband when accessing healthcare services as a person with disabilities.

Structural ableism occurs when my husband doesn’t feel heard, and healthcare providers do not properly address his concerns. It also happens when healthcare facilities are not fully accessible, and he can’t get weighed because the medical facility doesn’t have a scale designed for his wheelchair.

Structural ableism happens in the VA healthcare system when my husband needs to jump through hoops of the bureaucratic government system to access VA benefits to which he is entitled. In a few circumstances, he needed to appeal to his congressman to help him access his benefits because the system had initially denied his claim to a benefit.

Structural ableism happened when the VA healthcare system failed to provide him with optimal care during a recent hospital stay for a series of exams. He sporadically received proper bed baths for a whole week; to my horror and fear, he would contract a hospital infection.

Structural ableism breaks trust between patients and healthcare providers. Structural ableism is burdensome to our disabled veterans. As a wife, family member, and caregiver, structural ableism is taxing on me, too. Like many others, I have grown distrustful of our broken and ableist healthcare system.

The Future

How do we go from here?

Addressing structural ableism starts with key steps by the government, healthcare organizations, and healthcare providers acknowledging this grave problem and developing meaningful initiatives.

Recently, the U.S. Department of Health and Human Services (HHS), through its Office for Civil Rights (OCR), finalized a rule that prohibits discrimination on the basis of disability. The rule, titled “Discrimination on the Basis of Disability in Health and Human Service Programs or Activities,” advances equity and bolsters protections for people with disabilities under Section 504 of the Rehabilitation Act. This important rule clarifies and strengthens civil rights protections for people with disabilities, addresses discrimination in medication treatment, adds enforceable standards for accessible medical diagnostic equipment, and ensures accessible web content and mobile apps.??

What about healthcare organizations? How can they stop the systemic dehumanization of people with disabilities perpetuated by ableist practices and procedures?

Here are some recommended strategies:

• Provide appropriate, reasonable accommodation for people with disabilities.
• Strength models of care for people with disabilities.
• Consider the full spectrum of health services along a continuum of care for persons with disabilities.
• Enable the provision of integrated people-centered care that is legitimately accessible.
• Integrate the specific needs and priorities of people with disabilities into existing health safety protocols.
• Ensure disability-inclusive feedback mechanisms for the quality of health services.
• Consider the specific needs of people with disabilities in systems to monitor care pathways.
• Create a monitoring and evaluation plan for disability inclusion.

REFERENCES:

Understanding and combating ableism in medicine - https://www.saem.org/about-saem/academies/adiemnew/education/dei-curriculum/understanding-and-combating-ableism-in-medicine

Gréaux M, Moro MF, Kamenov K, Russell AM, Barrett D, Cieza A. Health equity for persons with disabilities: a global scoping review on barriers and interventions in healthcare services.?International Journal for Equity in Health. 2023;22(1):1-18. doi:10.1186/s12939-023-02035-w

Lundberg DJ, Chen JA. Structural ableism in public health and healthcare: a definition and conceptual framework.?The Lancet Regional Health - Americas. 2024;30. doi:10.1016/j.lana.2023.100650