The Public Health Statistic that Fails Disabled People

Vital signs in the shape of a heart

I first encountered the term “Disability-Adjusted Life Years,” or DALYs, during my second year of studying public health in college, and as a disabled person, the concept is concerning to me. DALYs are a measure used to calculate the amount of healthy years of life lost to disease or disability. They account for the difference between someone who dies a premature death due to disease or disability in comparison to the lifespan of an average, non-disabled person. In addition, this measure also assigns each type of disability a number that indicates how a disability is perceived to negatively impact health and quality of life, and equates this number as additional years of life “lost.” In this way, disabled people are viewed as only living a fraction of a healthy life.

I do not feel that I am less “healthy” than any of my non-disabled peers, nor do I feel like my quality of life is suffering because I am disabled. With the right supports, disabled people are able to live lives just as fulfilling as those of non-disabled people. In addition, by conflating being disabled with being unhealthy, public health initiatives spend more time and money focusing on how to get rid of disability, rather than supporting the health of people living with disabilities.

I would not be the same person without my disability, and would rather energy be spent supporting my needs instead of demonizing my condition.

However, when I shared these ideas with my class, they didn’t seem to understand my perspective. As I progressed in my studies, disability continued to be discussed solely as something to be combated by public health measures, or as something that negatively impacted quality of life. Not only are these viewpoints misguided, but they are actively harmful to disabled people. When disabled people are assumed to be inherently unhealthy, it becomes easy to ignore health problems in disabled people that could be addressed. It also allows medical practitioners to stigmatize disability, leading to inadequate health care for the disabled community.

There are many factors that may affect the health of disabled people that aren’t directly related to their disability.

For instance, a disproportionate amount of disabled people live in poverty due to education and employment programs that are not inclusive, as well as social welfare programs that place income limits on disabled people.

One of the first things I learned in my studies is that “wealth equals health.” That is, people with less money are more likely to have poorer health outcomes due to difficulties accessing life necessities and comprehensive healthcare. Because of the bias of public health research, the health problems of low-income people with disabilities may not be thoroughly examined because disability is assumed to be the source of their problems, rather than poverty.

The beliefs espoused in public health research also affect how health care is practiced. One instance of this relates to sexual health, as noted in the National Council on Disability’s report on “The Current State of Health Care for People with Disabilities.” It is still commonly assumed that disabled people can’t be sexually active, so disabled people are generally not offered sexual and reproductive health services. On the other hand, when a disability is not readily apparent, a doctor may invalidate a patient’s symptoms as “fake” and withhold necessary care. Both of these perspectives stem from the belief that “disability” equals “unhealthy,” and lead to dangerous practices like organ transplant discrimination against people with disabilities, forced treatment of people with mental health conditions, and “wellness” programs that place extra cost burdens on disabled employees for healthcare. These factors can cause disabled people to choose to avoid healthcare settings, leading to even worse health outcomes.

In a way, the conversation surrounding disability and health has created its own self-fulfilling prophecy, in which disabled people slip through the cracks of the healthcare system not because of their disability, but because of the judgments placed upon them by the medical community.

If, like in my classroom, students continue to be taught that disability results in lower quality of life, then this cycle will continue. I believe breaking the cycle requires a shift in public health research, with emphasis placed not on creating a world without disability, but rather on creating a world where disability doesn’t translate to a lower quality of life. Changing this perspective will positively impact healthcare practices, and help make sure that all places, especially doctors’ offices and hospitals, are accessible and inclusive to disabled people.

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Reid Knight is a multiply-disabled and queer civil rights advocate. He currently works for the Autistic Self Advocacy Network, where he creates accessible information guides on disability policy. He is also an incoming PhD student in the Social Policy program at Brandeis University, where he plans to conduct disability policy research focusing on institutions and community living.