Disability & Cancer: A Health Equity Issue
This week on December 3rd, the world recognized International Day of People with Disabilities – a day to celebrate the Disability community and advocate for equity. In Iowa, an estimated one in four adults have a disability (27.9% according to the 2022 Iowa BRFSS), and that number is growing. The Iowa Cancer Consortium would like to use this awareness day to shine a light on the connection between Disability and cancer and share our ongoing journey for inclusion.
First, it’s important to define what we’re talking about so we can understand each other.
Disability – A physical, mental, cognitive, or developmental condition that impacts a person’s ability to engage in society’s view of “typical” activities. Often, society imposes limitations for people with disabilities. As People with Disability Australia explains it, “it is not the inability to walk that keeps a person from entering a building by themselves, but the stairs that are inaccessible to them.”
Inclusion – With input from people with disabilities, removing structural and attitude-based barriers so that people with disabilities may participate fully.
Equity – Every individual person has access to what they uniquely need to live a healthy and fair life.
What does Disability have to do with cancer?
A lot, actually! Not only do people with disabilities experience health inequities when it comes to cancer prevention, screening, and treatment, but a cancer diagnosis is in itself considered a disability.
Cancer Health Disparities for People with Disabilities
Cancer Prevention
Smoking cigarettes is the leading cause of preventable death in the U.S. (CDC) and the leading cause of the deadliest form of cancer: lung cancer. In Iowa, almost 15% of all adults smoke, but that rate increases to 22.5% when you look at adults with disabilities (Iowa BRFSS, 2022). A common reason for smoking among adults with disabilities is to reduce stress, something that could likely be accomplished more healthfully if society eliminated the barriers that cause that stress to begin with.
According to a 2019 study, adults with disabilities are more likely to have oral human papillomavirus (HPV) and strains of HPV that are at higher risk for developing into cancer than adults without disability. People with disabilities are also less likely to receive the HPV vaccine. Why? One reason might be that many healthcare providers incorrectly assume people with disabilities either cannot or have no interest in being sexually active.
Cancer Screening & Treatment
Depending on the type of disability, it is well-documented that cisgendered women (women whose sex assigned at birth matches their gender identification) with disabilities are less likely to receive recommended breast and cervical cancer screenings than cisgendered women without a disability. In Iowa, 65% of eligible adults with a disability had received a mammogram in the past two years, compared to 74% of eligible adults with no disabilities (Iowa BRFSS, 2022).
Reasons for this vary. In her 2022 study, Lisa Iezzoni, MD, explained that people with disabilities face many barriers to equitable cancer care, including inaccessible office equipment and discrimination from healthcare providers. For example, a standard exam table is tall and difficult to get up on for a Pap test, and a standard mammography machine can’t be lowered down for someone using a wheelchair.
Source: ADA National Network
Source: ADA.gov
Iezzoni reported that only 40.7% of surveyed healthcare professionals felt confident in their ability to provide quality care to patients with disabilities. And shockingly, more than 80% of clinicians believed that the quality of life for people with disabilities was lower than people without disabilities. How might this belief affect their treatment recommendations?
Cancer as a Disability
Did you know that cancer is often considered a disability under the Americans with Disabilities Act (ADA)? Every individual case is different, but in general, people who have ever been diagnosed with cancer are entitled to necessary accommodations and can receive disability insurance for time off work. We are not legal experts here at the Iowa Cancer Consortium, but we have partners who are! Learn more and get assistance from Disability Rights Iowa and Triage Cancer.
Our Commitment to Inclusion
Last year, Consortium staff members read “Demystifying Disability: What to Know, What to Say, and How to be an Ally” by Emily Ladau and followed an excellent book club guide from Kids Included Together. We knew there was work to do to make the Iowa Cancer Consortium a more inclusive organization and coalition.
We started by engaging with Relay Iowa to become a Relay Friendly Business where our staff is trained to answer phone calls from individuals who are deaf, DeafBlind, or have difficulty speaking and use Relay to place calls.
We also used funding from Genentech to install accessiBe on our website, which ensures our website is accessible to people who use a screen reader, have color vision deficiency, and more. (You can explore the options by clicking the gingerbread man icon in the bottom right corner of the browser.)
Next, we partnered with Inclusion Connection, who trained our staff on inclusion and helped us write our inclusion statement, which we’re really proud of:
At the heart of the Iowa Cancer Consortium is a commitment to inclusion and respect for all individuals. Our approach is one of openness and shared humanity. We strive to create a space where diverse voices, bodies, and brains are welcomed and valued. We ensure every person’s unique story and connection to cancer are met with unwavering support. Together, we are building a stronger network that better reflects and includes all of Iowa’s communities.
Our staff and board of directors are in the process of reviewing and updating our policies to align with our inclusion statement. We also started asking about Disability status on membership forms, event registration, and membership surveys. This data is one way to measure how we’re doing on inclusion, but we know that data doesn’t tell the whole story.
Where do we go from here?
Inclusion is an ongoing process that requires feedback, evaluation, and change forever. We will continue to ask for feedback from you – please call us at (319) 384-1741 or email us at [email protected] with any comments, suggestions, requests, or complaints. We are also committed to spreading awareness about the many cancer health disparities for Iowans with disabilities by hosting webinars, inviting local and national Disability experts to our meetings and conferences, and increasing our social media communication about cancer and Disability.
Iowa Cancer Consortium members who are interested in reducing cancer health disparities for Iowans with disabilities are encouraged to join the Health Equity Workgroup and the Policy Workgroup (view upcoming meetings). And if you or your organization would like to learn more about inclusion, cancer, and Disability, check out the resources below:
Resources
- Iowa Cancer Plan (Keyword: Disability)