Ableism and Inequitable Access to Healthcare
The National Institutes of Health (NIH) recently announced nearly $30 million in funding over a period of five years to support studies to understand how “ableism”—discrimination and social prejudice against people with disabilities—contributes to health disparities (Eunice Kennedy Shriver National Institute of Child Health and Human Development, 2024). This NIH program will fund ten projects to investigate multiple areas of research related not to the care and treatment of disabilities, themselves, but instead to focus on health disparities created by ableism and inequitable access to healthcare services that create disparities for persons living with disabilities.
This issue is fraught with complexities, in no small part because of how persons living with disabilities are viewed by themselves, by their healthcare providers, and by the general public. To elucidate how many people are living with disabilities in the United States, we pulled data from the American Community Survey (ACS) and Behavioral Risk Factor Surveillance System (BRFSS) for 2022 to evaluate how many people were living with one of the following types of disabilities for every county in the United States:
Cognitive Disabilities – physical, mental, or emotional conditions that make it difficult for a person to concentrate, remember things, or make decisions;
Hearing Disabilities – physical disabilities including deafness or that make it difficult to hear;
Independent Living Disabilities – physical, mental, or emotional conditions that make it difficult for a person to do errands alone, such as visiting the doctor or shopping;
Mobility Disabilities – disabilities that make it difficult for a person to walk or climb stairs;
Self-Care Disabilities – disabilities that make it difficult for a person to dress, feed, or bathe themselves, and;
Vision Disabilities – physical disabilities including blindness or that make it difficult to see, even when wearing corrective lenses, such as glasses or contacts.
Nearly 1 out of every 7 adults living in the United States (~13.4%) are living with some sort of disability, including:
More than 1 out of every 20 adults (5.5%) with cognitive disabilities;
Nearly 1 out of 25 (3.9%) with a hearing disability;
1 out of every 17 (5.9%) with an independent living disability;
Nearly 1 out of 40 (2.4%) with a mobility disability;
More than 1 out of 15 (6.8%) with a self-care disability, and;
1 out of 40 (1.5%) with a vision disability (Figures 1-7).
[Editor’s Note: Use image carousel/slider to display all seven maps]
When we began reaching out to experts in the space, we started with Dr. Marissa Kofke, an Associate Professor at State University of New York Brockport specializing in Neurodiversity and Inclusive Education, who referred me to a Facebook group of experts and advocates who have and are working in various disability spaces:
“Sometimes people are picky about medicalized language like ‘patient’ because a lot of them are not supportive of the medical model of disability.”
This was a concept that is important to both understanding the disparities faced by persons with disabilities and understanding the underlying reason why those disparities may exist or be exacerbated by the people around them.
The medical model of disability is one of three overarching “models”—ways of thinking about disabilities and disabled people, with each model addressing the perceived “causes” of, appropriate responses to, and deeper meanings of disabilities in human beings (Olkin, 2022):
Moral Model
The moral model of disability views a person’s disability as the being result or a reflection of the disabled person’s or their family’s character, deeds, thoughts, and karma. In this model, a person’s disability can be viewed as being a moral failing on the part of the person living with the disability and/or their family. This model is common around the world and is regularly used in popular culture—particularly in Gothic literature and films—where a visible physical disability in a character both sets them apart from the rest of the characters and serves as a physical manifestation of their evil intentions or deeds.
Another version of the moral model that is common is one where a disability is seen as a mark of honor, faith, or strength, or is a sign of someone being “touched by God.” In this version, a family into which a person with a disability is born may believe themselves to have been “chosen” because of God’s faith in them. An example of this is the belief that people with Down Syndrome are representations of God’s love because of their “guileless hearts” (Latta, 2018).
Medical Model
The medical model of disability views disabilities as pathological problems that need to be “solved” or “cured.” The goal of this model is to make the disabled person, their system, or their functions to as near to “normal” as can be scientifically achieved. This model suggests that people with specialized training are the “experts” in disability and that the person living with the disability is expected to listen to the advice of these “experts.”
In this model, as Dr. Kofke explained to me, “A disability is a medical issue to be solved and it is the disabled person’s responsibility to listen to the experts and solve it.”
Social Model
Finally, the social model of disability views disabilities as just one aspect of a person’s identity, similar to race, ethnicity, gender identity, or sexual orientation. In this model, disability is believed to be a mismatch between the disabled person and the physical and social environments in which they live. This perspective tends to focus on creating ways to address this mismatch by changing the physical environment to make it as accessible as possible (e.g., ensuring that buildings are accessible by installing safe and useable ramps or ensuring that all areas of multi-floor buildings are accessible by easily accessible elevators), and by working to change society’s views of disability by eliminating stereotypes and portraying people with disabilities as being whole, without needing to be “fixed”.
The first two models, disability advocates argue, can both lead to and exacerbate health disparities experienced by persons with disabilities. In the moral model, people with disabilities may be either ignored or mistreated for their moral failing or infantilized to the point where their health concerns are ignored. In the medical model, again the person with the disability is sidelined and their perspectives or complaints may be disregarded by the provider or the “experts.”
John D. Kemp, President and CEO of the Lakeshore Foundation, explained, “As a person born with my disabilities and having grown up in Bismarck, ND, living close to 'an old folks home' in the 1950's, almost every day I'd have an encounter with a senior who would tell me that something bad had happened in my parents' family lives and my ‘handicap’ was the outcome of some family members' bad behavior. I couldn't understand it and my Dad tried to explain that this is not why I was born without arms or legs below the elbows and knees, that this was natural, and we just didn't see other children with severe disabilities because society didn't want to see us. Remember the last Ugly Law, where communities could use these laws to limit our time in the community, was overturned in 1972. This was Ableism in its most ignorant form.”
Edito'r’s Note: So-called “ugly laws” were municipal statutes in the United States that outlawed the appearance in public of people who were, in the words of one of these laws, “diseased, maimed, mutilated, or in any way deformed, so as to be an unsightly or disgusting object” (Wilson, 2015).
Kemp continued, “The Medical Model perpetuated Ableism until slowly, people like Dr. Daddy Allen, founder of what is now Easterseals, in 1918, witnessed a boy being severely injured in a trolley car accident in Elyria, OH, and decided that little boy had every right to as good a life as could be provided.”
In the social model, however, the goal is to create equitable access and outcomes, placing the person with the disability’s needs, hopefully as defined by the disabled person, first and foremost. This means having physicians and other healthcare providers who are both willing to listen to their health concerns and to respond in ways that put the person with the disability’s experiences and issues at the forefront instead of operating from a position of, “I know better, because I’m the doctor, here.” It also means working collaboratively with the person, and in the case of people with intellectual or development disabilities (IDDs), to do their best to understand what their patient is telling them.
According to Kemp, “As we've moved from the Medical Model to the Social Model, where the best interests of people with disabilities were and are the most important criteria to uphold, we, disabled people, are having a very difficult time throwing off these past and current programs because most of the general public can't fathom that we are capable of making decisions, both good and bad, for ourselves, though non-disabled people make terrible decisions every day and no one takes away their right to make terrible decisions for themselves.”
Rebecca Cokley, Program Officer for U.S. Disability Rights at the Ford Foundation, added that implementing the social model also means that people with disabilities have the ability to find doctors with disabilities and requires that the medical establishment addresses its own internalized ableism and disability discrimination.
Cokley argues, "Often people assume disabilities are naturally comorbid. So, if someone has depression and is deaf, the medical industrial complex will assume, 'Of course they're depressed; it's because they're deaf. If they get cochlear implants, that'll solve it.' But co-existence is NOT comorbidity in many cases."
“It is possible to be in a medical environment and still embrace a social model. It’s all about asking the individual what they need (no matter their level of functioning) and listening to what they want,” said Dr. Kofke. “I know with autism that dental care is really tough, and basically, they need to be put under a lot of the time. So, if they can’t find a dentist who will listen and treat them well, they end up not getting any dental care and that goes downhill quickly.”
This statement was confirmed in the literature we reviewed.
In fact, in doing research for this article, much of what we discovered was that many of the health disparities experienced by people living with disabilities are often the result of negligence, disregard for the person’s complaints, or simply the inability to access culturally competent and/or disability-friendly healthcare options.
Said our own Executive Director, Brandon M. Macsata, who himself is a long-term survivor living with HIV:
"Some years ago, while traveling for work in Tallahassee, Florida, I visited an urgent care center seeking antibiotics to treat a staph infection on my thigh, only to be told by the intake nurse that antibiotics ‘don't work on people living with AIDS’. That is the very form of stigma that fuels patients being treated differently, and as such yields greater health disparities for people living with a chronic health condition, such as HIV."
As illustrated in Figures 1-7, across every disability type, one thing is consistent:
The prevalence of people living with disabilities is higher in states that are more rural. West Virginia has the highest prevalence rates for every type of disability, except for mobility disabilities where Mississippi has the highest prevalence. Where people with disabilities live can, and often does, serve as a disparity, in and of itself, contribute to creating disparities, and exacerbating existing disparities.
In 2022, 22.6% of adults living with disabilities reported being unable to see a physician due to cost, with 11.1% of disabled adults reporting being uninsured. Moreover, 19.7% reported not having a personal doctor or healthcare provider (CDC, 2022). In each of these cases, the highest percentage of disabled adults reporting these barriers lived in Southern and rural states.
Beyond issues of access, people living with disabilities are more likely than people without disabilities to develop preventable health conditions and to experience worse health outcomes as a result. These conditions can include increased risks of developing bowel and bladder issues, fatigue, unintended injuries, mental health issues and depression, chronic pain, pressure sores and ulcers, arthritis, asthma, cancer, Chronic Fatigue Syndrome, diabetes, flu, heart disease, limb loss, Methicillin-resistant Staphylococcus aureus (MRSA), musculoskeletal disorders, oral health issues, eating disorders, and respiratory syncytial virus (RSV) (Centers for Disease Control and Prevention, 2020). These issues often go untreated, particularly in people whose disabilities make it difficult to communicate their conditions and needs clearly to caregivers, nurses, aides, and physicians. When untreated, these issues compound over time, creating more serious health issues and worsening existing ones.
Laura Friedman, a PlusInc board member, also brought up a significant issue that existed during the COVID-19 pandemic:
“As a patient with hearing loss who lip reads, when a medical provider is wearing a mask, mumbles, or turns their head away from me when speaking to me, my ability to understand and participate in conversations around my health and wellbeing is diminished significantly. Particularly in a COVID and post-COVID world, this has been exacerbated by new office policies to reduce the spread by mask wearing.”
While health professionals across the world were telling people to “mask up,” Friedman and other people with hearing disabilities were struggling to communicate. While adaptive technologies, including transcription services offered by virtual meeting platforms, like Zoom and Google Meet, are getting better, they often rely on artificial intelligence (AI) technology that may be inconsistent or unable to accurately transcribe and display what is being said.
“While I am empathetic to their needs to reduce exposures, as a fully independent and self-sufficient individual I have newfound struggles related to advocating for myself in a medical setting or feeling confident that I am hearing all the relevant and pertinent information about my health, procedures, medications, etc.,” Friedman continued. “Better patient-centric care, notations on my files regarding my hearing loss, and other practices by medical providers could be taken to ensure all people, regardless of their disabilities, feel at ease with their medical providers and confident advocates for their well-being.”
In addition to being more likely to develop serious infections and chronic conditions, people living with disabilities are significantly more likely than their peers without disabilities to experience physical, mental, emotional, and sexual abuse and assault. According to the CDC, people with disabilities are 4 to 10 times more likely to become victims of violence, abuse, or neglect than people without disabilities, and children with disabilities are more than twice as likely to be physically or sexually abused than children without disabilities (CDC, 2022).
These disparities and susceptibilities to illness, abuse, assault, and neglect make it imperative that we work diligently to develop healthcare and social systems and standards that are informed by and designed in direct response to the needs and wants of people living with disabilities.
It means not just asking people with disabilities what those needs and wants are from the beginning, but actively incorporating their responses into those systems.
It means working directly with people with disabilities to develop provider training and continuing education sessions that teach healthcare providers how to work in collaboration with patients who have disabilities, rather than assuming that they know best what their patients need.
It means working directly with social services and local, state, and federal agencies to develop better safeguards that can help to recognize, report, and respond to signs of abuse, neglect, and/or assault, regardless of the disabled person’s ability to communicate.
It means building, adequately funding, and resourcing robust social and healthcare services programs designed by and for people with disabilities so that both they and their caregivers are able to ensure that they have equitable access to affordable services, educational opportunities, and devices that can help them to function as independently as possible.
But, most importantly, it requires a shift in societal perceptions across every sector and community—it requires us to ensure that people living with disabilities are given agency; that they are considered to be individuals who are not only capable of making their own decisions, but are listened to when they tell us what they need and want.
PlusInc is dedicated to research and reporting on health disparities across every population and will continue to research health disparities experienced by people living with disabilities.