People with disabilities are the largest minority group in the United States. According to a 2018 report by the Centers for Disease Control and Prevention, one in four American adults (27 percent) has a disability of some type that can affect their lives in various ways (i.e., caring for themselves and making decisions). This population includes both apparent (i.e., mobility) and non-apparent conditions (i.e., chronic pain, autism, and mental health). That statistic is the same as saying 61 million people. If comparing the United States to cake or pie, the number of citizens with disabilities is equal to a quarter of the delicious dessert.
When someone ages, the rate of acquiring a disability increases because of higher injury risk or changes to that person’s mind and body. As demonstrated by the above statistics, having a disability is a large part of the human experience that cuts across various other cultures (i.e., race, LGBTQ+, gender, etc.). However, people with such conditions also fall into a historically underrepresented community. This statement is especially true when it comes to programs and policies.
Health care is a prime example of how the disability community often gets overlooked by professionals. The same report from the CDC mentioned in the intro also highlights that working-age disabled adults encounter multiple barriers, including:
- 1 in 4 adults with disabilities 18 to 44 years who do not have a usual health-care provider
- 1 in 4 adults with disabilities 18 to 44 years who have an unmet health-care need because of cost in the past year
- 1 in 5 adults with disabilities 45 to 64 years who did not have a routine check-up in the past year
However, studies have suggested that these numbers may be inaccurate, and there could be more people experiencing health-care hardships.
The lack of access to health resources often comes from diverse societal hurdles. The most well-known obstacles faced by the disabled community are often physical. For example, a health-care provider’s office might not have an accessible entry, information, or equipment to accommodate a patient’s needs.
Additionally, other barriers faced by people with disabilities may not seem as apparent to the general public. For instance, a doctor or other medical professional may casually comment on a patient with an invisible disability about not looking like they have a condition. While that statement might be well-intended from one perspective, others may consider it ableist because of the subtle suggestion that disabilities fall into a “one-size-fits-all” category. Plus, it could also imply one’s disability needs to be permanently fixed rather than accommodated in the community through the best appropriate services specifically tailored to their individual needs.
I partially pursued a public health career because of the above issues. While earning a Master in Public Health, I was saddened but not surprised that people with disabilities (particularly intellectual and developmental disabilities) are frequently afterthoughts in health-care settings nationwide. Enduring the COVID-19 pandemic has led to beneficial accommodations like increased telehealth and mobile clinics. However, I also hear many members in the disability community share their concerns regarding increased isolation, lack of understanding, and stress when dealing with medical professionals. Critical improvement lessons still need learning!
With the previous data in mind, the question soon becomes how can we support people with disabilities to achieve health equity? I can only speak as one person with some lived personal experiences, as I have two non-apparent disabilities (autism and Sotos Syndrome) and am a sibling of someone who has visible conditions. Health-care providers have created barriers on multiple levels, from access denials to incorrect assumptions of needs and abilities. My professional and academic background in public health may boost my credibility. However, there are no universal “silver bullet” solutions to improve health access.
One suggestion is transforming the health field from a system of care to one that cares. This change can take many forms, from treating patients with a person-centered, culturally competent lens to helping better shield health-care staff from intense burnout.
From my perspective, a launching point is for people with concerns to learn advocacy skills to help voice their issues (i.e., asking clarifying questions and expressing needs/boundaries). On the flip side, those trouble-shooting obstacles could use active listening (“It sounds like…”, “I understand that…”) to help craft tailored ways of better supporting an individual instead of lumping communities together.
This strategy could also help lead to more creative solutions to address various aspects of care — including the physical, mental, and social areas (i.e., housing, employment, and resource access). Health literacy and advocacy skills may also improve by bringing patients and providers into a mutual, empathetic relationship.
Health and disability are both complex, multilayered concepts. By combining professional fields of expertise and personal perspectives, we could better address these issues within the disability community and other people groups!
Emily Bridges, MPH, CHES®, is a public health advocate at the Independent Living Resource Center.