Written by Jhanvi Desai
Designed by Antoinette Fang
Peyton, a forty-five-year-old female with cerebral palsy, had an appointment at a clinic one morning. The appointment would normally have been simple, but for Peyton it wasn’t. She had to wait four hours to see her healthcare provider at an upper level of the building because the clinic had neither an elevator nor a wheelchair lift. Eventually, Peyton made it to the upper level — yet the hardships did not stop there.
While she waited to go in to see her provider, Peyton repeatedly heard lofty assurances like “Ma’am, someone will get to you soon” and “yes, we have arranged for a few people to help you through the stairs. They will be here with you as soon as they finish attending to other patients.” In the exam room, the doctor went on to speak directly with the provider. “Hello, what is your patients’ name? What is she here for? How is she feeling?” These questions were asked to Peyton’s caregiver while Peyton looked on as her caregiver answered these questions on her behalf, as she was denied the opportunity to speak for herself.
Disability is an umbrella term for impairments, activity limitations, and participation restrictions. Like Peyton, about one in four adults in the USA live with a kind of physical or mental disability. One in three adults with disabilities aged 18-44 years either do not have usual healthcare provided or have an unmet healthcare needs because of costs. Adults that can seek a healthcare provider face other challenges like Peyton. These challenges or barriers reflect more than the limitations of the body. These barriers, through their presence or absence in the environment, add on to a person’s disability and are present in the society because of the nature of the social system.
Despite the prevalence of disability in our society, we do not understand how disabled people face challenges in everyday tasks that are deemed simple for other people. Driving a car, cooking food, hanging out with friends, or even having a conversation can be not as easy for some people. The basic barrier to healthcare faced by the disabled is attitudinal. Stereotyping the disabled, creating stigma or prejudice about them, and discriminating against them based on their disability has created a general idea about the disabled that is far from accurate.
Assumptions like people with disabilities have faced a tragedy and should be pitied, they are dependent, helpless, sick, or in pain are wrong and demeaning. Other communication barriers are experienced by people having disabilities affecting hearing, speaking, reading, writing, or understanding, and need other ways to communicate. When alternative ways of communication are not available, these people face difficulties and need assistance.
Physical barriers like in Peyton’s situation are structural obstacles in the environment that prevent mobility from affecting normal activities like locomotion for people having mobility impairments. Other policy barriers refer to the lack of awareness and enforcement of existing policies that support people with disabilities. Denying accommodation to qualified people with disabilities, denying them access to participate in federally funded programs and services because of their disability are few instances of policy barriers. Programmatic barriers occur when effective delivery of healthcare is limited to people with disabilities. Lack of accessible equipment, inconvenient scheduling, improper communication with the patient, and inaccurate understanding or attitude of the patient by the provider can cause programmatic barriers.
Social barriers are social determinants of health that put people with disabilities at a disadvantage. Barriers related to where people with disabilities live, grow up, learn, work, what is their age and family income tend to contribute to their decreased functioning. These social barriers indeed put people with disabilities less likely to be employed, less likely to complete high school, more likely to experience violence in childhood, and more likely to be unemployed and live in poverty. Finally, transportation barriers caused by a lack of transportation facilities for people with disabilities undermine their independence. People with disabilities face these barriers daily, but society fails to realize, acknowledge, and act upon it.
The COVID-19 pandemic has highlighted how people with disabilities also face barriers to healthcare. People with disabilities might be at a greater risk of contracting the virus because of their underlying medical conditions, or barriers to healthcare and need extra precaution. People who live at care facilities or require caregivers regularly might not be able to follow social distancing in its entirety. Some are unable to understand the need to practice social distancing or find it difficult to adapt to isolation. While some find difficulties in adjusting without support from trained caregivers who are not trained or prepared for such situations and are also at risk. For people facing physical barriers, testing is difficult as they cannot go to testing centers, and handwashing is a challenge when they cannot easily access a basin. Those infected were discriminated against by the rationing of healthcare. Treatment like access to ventilators was not considered urgent or necessary for people with disabilities because they were considered less likely to survive because of their inherent conditions. The pandemic successfully showed the intensity of attitudinal, physical, policy, and programmatic barriers commonly faced by people with disabilities.
The pandemic not only illuminated barriers to healthcare but also raised questions on medical ethics. Denying treatment to people with disabilities is certainly not ethical. It violates the autonomy of the patients who are denied the ability to make their own decisions regarding healthcare treatments and procedures by taking away their choice and reducing their options. It violates justice, the idea that burdens and benefits of new or experimental treatments must be equally distributed among all groups in society by putting them at a greater risk of contracting the virus. It violates beneficence or the idea that treatments should be provided with the intent of doing good for the patient and helping them advance their good. It violates non-maleficence which requires that a procedure or treatment does not harm the patient or others in society. Medical Ethics forms the core of the process of making decisions in healthcare, and they are often not properly practiced when treating the disabled.
The American Disability Act (ADA) prohibits discrimination based on disability and requires healthcare providers to provide full and equal access to services and facilities to individuals with disabilities. This requires healthcare facilities to provide accommodations to the disabled and include accessibility features that make sure there are no physical and communication barriers.
These rights did not come easily for the disabled. Individuals and disability groups have relentlessly fought for change and continue to do so. Metzler vs Kaiser case of 2001 is one such case that brought changes in healthcare and made access to healthcare easier for individuals with disabilities. An individual Metzler had argued that the health maintenance organization Kaiser discriminated against disabled patients and provided them inadequate medical care. Kaiser responded responsibly and agreed to meet the needs of the disabled by reviewing policy and making changes in their facilities to ensure just treatment for the disabled. This case changed the nature of healthcare in the Kaiser healthcare system in California and is a precedent to the positive changes seen as groups and activists continue to spread awareness and raise questions on unethical issues.
One of the reasons why there are many barriers for the disabled to access healthcare is because disability is not represented in the field of healthcare. Despite equal education and employment opportunity rights of the disabled people, they are not provided equal consideration as candidates for healthcare-related education programs and jobs. Disability in healthcare professionals is perceived to make them unfit in their ability to provide proper service. Patients are apprehensive of receiving service from professionals having some sort of disability. The technical standards required for most MD students include skills in observation, communication, motor abilities, intellectual integrative and Quantitative abilities, and behavioral emotional, and social attributes. The tasks associated with these skills and attributes are very specific and might not be easily practiced by people with a certain vision, communication, and motor impairments. Medical students are capable of specializing in a field of medicine where their impairments will not be a limitation. The technical standards are generalized and should be updated. Moreover, professional schools should provide accommodations to their students and give equal opportunities to candidates with disabilities.
The healthcare field will likely not be empathetic and just to people with disabilities until it does not include the same people working in the field. Disabled patients tend to feel more and satisfied with the services when their provider has had a personal experience with disability. Though the healthcare field is gradually becoming more accommodating to people with disabilities, there is a long way ahead to change the stigma about healthcare providers with disabilities.Providing equal healthcare to individuals with disabilities is a challenge in our society. We need to change our perception of disability to bring a change. We ought to be aware, know the International Day of Persons with Disability, follow Instagram handles like Project LETS, Chronically Awesome, and organizations like American Association for People with Disabilities and International Disability Alliance to actively engage in learning about the disabled. If we view disability as a social responsibility rather than a personal deficit, we can spread awareness about the barriers associated with disabilities, change our attitude about it, and approach this issue collectively to support disabled people to not only get equal access to resources but also to live a normal independent life where they do not have to struggle daily for their needs. Bringing change in institutions and normalizing the provision of alternate ways of communication and structural facilities will not only make the lives of disabled people easier but also increase inclusion and gradually evoke social change.
Edited by Ria Parikh