Turning a Blind Eye: A Look at Unjust Health Outcomes among the Deaf, Blind, and Physically Disabled

BY HOLLY ROBINSON

Health care providers have a responsibility to the most vulnerable members of their communities. However, problems arise when a population’s most vulnerable members are not part of the community, when they are pushed to the side and deemed unfit to contribute to society. This is the reality for many around the world who suffer from physical disabilities. The physically disabled are often excluded from participating in society. The way that the health system treats the disabled is particularly important, as studies have shown that those with disabilities experience greater vulnerability to secondary conditions, co-morbid conditions, and premature death. They are also more likely to be unemployed or illiterate.¹ With over one billion people in the world considered disabled, health equity for the physically disabled must be a primary focus for all healthcare professionals.

Contrary to popular belief, the factors that prevent disabled persons from leading healthy and successful lives often do not include the physical disability itself. Rather, factors such as stigma, physical barriers, and inadequate training within the healthcare system cause substantial harm to the physically disabled. The World Health Organization’s definition of disability encompasses these unjust social factors. The WHO states, “Disability is the interaction between individuals with a health condition and personal and environmental factors (e.g. negative attitudes, inaccessible transportation and public buildings, and limited social supports).”¹ Health care providers and able-bodied members of the community more generally must consider not only the abilities that disabled persons may lack, but also the way in which disabled persons are prevented from participating in society and, more specifically, in health care systems in both high- and low-income countries.

Persons with physical disabilities face many barriers to receiving care, many of which relate to the physical challenges of reaching a health care facility if one has limited sight or mobility. Disabled persons often must be accompanied to the hospital or health center, which may not be possible in situations in which family members cannot afford to take a day off for fear of termination or loss of income. In addition, disabled persons have fewer public transportation options available to them because public transport vehicles, or the routes to access the public transport, may not be accessible to disabled persons. These physical obstacles to seeking out healthcare are especially problematic given that people with disabilities often have greater need for health care.¹ Unfortunately, these needs largely go unmet and unnoticed. Disabilities also greatly affect socioeconomic status of entire families, as disabled persons are likely to have limited employment opportunities.² This creates an economic barrier to care.

Once at the health care facility, the physically disabled may continue to struggle to access the medical treatment they need. People with disabilities are reportedly three times more likely to be denied care when they are able to reach a health facility.¹ Stigma and preconceptions that the disabled are lazy or defective prevents disabled people from being taken seriously when they ask for health care, which can be life-threatening. Furthermore, once a disabled person is granted admission to a healthcare facility, they often find that the equipment is not suited for persons with a particular disability. For example, examination tables are often not able to be height-adjusted, making it more difficult for patients in wheelchairs to be properly examined. Mammography equipment requires a woman to stand, and many examinations require an ability to follow verbal instructions. While hospitals in high-income countries often do have adjustable beds, transportation services, and other measures in place to guarantee proper care for disabled patients, in facilities that lack the proper equipment and personnel, disabled patients do not receive the care they deserve. Approximately 80% of the world’s persons with disabilities live in low-income countries, where facilities are both fewer in number and less equipped to accommodate the unique needs of the disabled.³ The poor and disabled lack access to even the most basic of services, especially at the most critical times.

To add to these injustices, health care providers are often ill prepared to treat patients with disabilities, which acutely affects the deaf and blind. The WHO found that people with disabilities were more than twice as likely to report finding the skills of health care providers to be inadequate.¹ This is especially prevalent for members of the deaf and blind communities, who are at a disadvantage in interactions with fully-hearing or fully-seeing practitioners. To illustrate this point, imagine a deaf woman in a low-income country who suffers from mental illness. There are most likely few mental health professionals in her area and, as previously described, making the journey to visit one involves a family member recognizing her need for services and taking a day off from work to accompany her to the health center. Furthermore, the mental health professional may lack the ability to communicate with her. Other than providing medication, the practitioner cannot do much in terms of therapy or even emotional support. Her physical disability (or rather, the practitioner’s inability to treat someone with her disability) exacerbates her mental health issues, leading to further co-morbid disease or even premature death, which can only be seen as an unjust and unacceptable health outcome.

In higher income countries, the same deaf woman may fare a bit better, but her experience with the health care system may still be wrought with issues. Many hospitals do not have on-site sign language interpreters and instead rely on connecting with interpreters via Skype or other video conferencing services, which can be unreliable.⁴ More importantly, however, the interpreter often does not have a medical background and therefore may not know much of the medical terminology necessary to facilitate information between the doctor and patient. The same issues arise when family and friends attempt to help.⁴

In order to make care for the disabled more equitable, the WHO recommends that disability education be integrated into both undergraduate and higher-level education for all health care professionals.¹ This includes community health workers, who often play a large role in the health of poor, rural populations. However, other groups argue that the best way to achieve culturally and linguistically appropriate care is to seek out deaf practitioners who know the local sign language and to create assessment tools in major sign languages such as American Sign Language and British Sign Language.⁵ There is a particular pressure for this within the realm of mental health. Most mental health initiatives and treatments are inclusive only of hearing populations, as they often focus on verbal communication. This is a critical concern, as there is a higher prevalence of mental health problems among the deaf.⁵ There are not many deaf people trained as physicians and psychiatrists, even in the most resource-rich countries, perhaps due to lack of opportunity or a curriculum designed for an exclusively hearing population. In the United States, just a handful of deaf doctors have been certified since the first deaf doctor, Dr. Judith Pachciarz, graduated from the University of Louisville School of Medicine in 1983.⁶ It is easy to imagine that in low-income countries where a disabled person is unlikely to receive even a basic education, deaf persons are excluded entirely from the possibility of medical training.

Though the integration of deaf persons into the field of medicine poses many challenges, it is part of a broader goal for health systems and health care providers to focus on providing inclusive care for people with disabilities. Health promotion activities and campaigns rarely select disabled persons as their target audiences.¹ For example, in the US, the way sex education is taught in schools for the blind is crucial to both the physical and social development of blind adolescents. Resources developed by Perkins School for the Blind cite the importance of helping the blind to understand their sexuality and gender identity in addition to understanding things that the seeing-community takes for granted, such as what is a public and what is a private location.⁷

Studies also show that physically disabled adolescents are more likely than their non-disabled peers to engage in risky sexual behavior, perhaps due to the lack of sex education for the disabled. A 2010 study in South Africa showed that risky sexual behavior among disabled adolescents led to an increased prevalence of HIV among disabled populations.⁸ The team behind this study concluded that these results point to a need to include disabled adolescents in health promotion activities related to sex education. The inclusion of the physically disabled in such activities is not only important from an ideological perspective, but also from a physical health perspective. Health educators and practitioners cause unintended harm by excluding the disabled from important health education programs.

It is impossible to paint a picture of the health of disabled populations without considering the substantial social implications of disability in various communities throughout the world. These social factors negatively impact health and often place disabled persons in a more vulnerable position in society. Due to factors such as stigma, discrimination, and neglect, social problems become embodied in the lives of the disabled. Disability is as much a social issue as it is a biological issue. The effects of social exclusion and discrimination manifest themselves within the health system. Studies by the WHO have shown that disabled persons are four times more likely to report being badly treated when they seek medical care.¹ Additionally, only two percent of children with disabilities in low-income countries receive the rehabilitation necessary for their conditions.³

Exclusion of the disabled also extends far past the health system. Members of the deaf community are often excluded from the wider community, which has a profound impact on their development. Education is a particular concern for the deaf in many parts of the world. Rather than attending school, many deaf children stay at home, where they are shielded from the community.⁹ This is especially prevalent in rural areas.

However, health education and communication more broadly begins at the community and family level. In many communities, there are additional constraints that prevent deaf children from becoming fully engaged with their peers or in society more generally. Social factors often prevent parents from dedicating time to the communicative development of their disabled children. For example, in rural China, researchers report that parents of deaf children express interest in learning sign language and other ways of communicating with their children.⁹ However, poverty and work-load places a major constraint on both their time and resources, preventing them from taking classes led in the community. In situations in which each day’s wages are crucial to make ends meet, working hours cannot be dedicated to sign language classes. Unreliable or unavailable transportation also plays a major role, as many households are far away from the urban locations in which sign language experts work.⁹

It is difficult to develop communication between a hearing person and a deaf child without active and ongoing effort from the family. It is crucial that deaf children are able to learn in everyday social contexts, just as hearing children do.⁹ However, researchers have found that, as in rural China, parents in countries such as Sri Lanka and Afghanistan are unable to spend the amount of time necessary for their children to develop communication skills.⁹ There is a need for societal level change in many communities in order to allow families to properly provide for their disabled children. A cost effective solution to such issues has been tested in Papua New Guinea. By simply educating family members on the importance of developing communication with their deaf children, researchers observed a significant improvement in deaf children’s ability to engage with the community and participate in society.⁹ This has major implications for the mental health of the deaf, as it allows children to develop in a fully supportive environment.

In order to mitigate unjust health outcomes, many organizations and foundations throughout the world work to eliminate barriers to care and promote the inclusion of the physically disabled in all aspects of society. The National Association of the Deaf, for example, is a US organization that advocates for the civil rights of the deaf.¹⁰ The organization focuses on the core issues facing the deaf in America, which includes problems with health care, housing, and education. Broader in both ideological and geographical scope is Handicap International, which advocates for disability rights and inclusion in low-income countries.¹¹ They consider inclusion in all senses—educational, social, economic—and emphasize the importance of inclusion during times of crisis and emergency. Currently, they are working to provide rehabilitation to physically disabled Syrian refugees and those affected by the Nepal earthquake.¹¹ Their work in non-emergency settings also focuses on the importance of inclusion in a disabled person’s life course. They state, “Exclusion from education further perpetuates the vicious cycle of disability and poverty.”¹¹

The question remains of what more can be done to ensure the rights, inclusion, and health of those with physical disabilities worldwide. The exclusion and stigma against those with physical disabilities not only violate civil rights, but also have profound consequences for health. Until the health system is fully inclusive, the world will not see the achievement of health as a human right.

Holly is a senior in Branford College majoring in Russian. She is also in the Accelerated 5-year BA/MPH Program studying Social and Behavioral Sciences. She can be reached at holly.robinson@yale.edu.

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References:

1. Disability and Health. (2015). The World Health Organization. Retrieved from http://www.who.int/mediacentre/factsheets/fs352/en/
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3. People with Disabilities. (2012). International Federation of Social Workers. Retrieved from http://ifsw.org/policies/people-with-disabilities/
4. McDaniels, A. (2015). Deaf patients say it can be difficult to communicate at hospitals. The Baltimore Sun. Retrieved from http://www.baltimoresun.com/health/maryland-health/bs-hs-sign-language-hospital-20150913-story.html
5. Weisberg, D. (2012). The Psychological Wellbeing of the Deaf Community: A Social Exclusion Perspective. Retrieved from https://www.academia.edu/1711910/The_Psychological_Wellbeing_of_the_Deaf_Community_A_Social_Exclusion_Perspective
6. Dr. Judith Ann Pachciarz. (n.d.). National Library of Medicine. Retrieved from https://www.nlm.nih.gov/changingthefaceofmedicine/physicians/biography_244.html
7. Issues in Social Skills & Sex Education. (n.d.) Perkins School for the Blind. Retrieved from http://www.perkinselearning.org/videos/webcast/issues-social-skills-sex-education#chapter4
8. Maart, S. & Jelsma, J. (2010). The Sexual Behavior of Physically Disabled Adolescents. Disability and Rehabilitation, 32(6), 438-43.
9. Lehtomaki, E. (2001). Inclusion and Deafness: Linking the Family, School and Community. Enabling Education Network. Retrieved from http://www.eenet.org.uk/resources/docs/lehtomaki.php
10. About Us. (n.d.). National Association of the Deaf. Retrieved from http://nad.org
11. What: Taking Action in Situations of Poverty and Exclusion, Conflict and Disaster. (2016). Handicap International. Retrieved from http://www.handicap-international.us