Learning through the Lived Experience: Recognizing the Anniversary of the Americans with Disabilities Act

Part of recognizing the Americans with Disabilities Act (ADA) and assessing the progress that has been made since it was enacted is to listen and learn from the varied lived experiences among people with disabilities. People with disabilities are the true experts and can share important insights about feasibility, relevance, and benefits for public health efforts to be truly congruent with their real time needs.  I’ve had my own lived experiences, yet in my role as the CDC Chief Disability Officer, I have regular engagement and ongoing discussions with CDC colleagues and disability partners to explore their realities and understand the evolving needs for people with disabilities, including addressing ableist attitudes that spread false and negative views about disability.

“My husband and I were at a restaurant, and we were ready to order when our waiter looked over to my husband and said, what does she want? And I had to say, I’m here. I can order for myself.” Tamara Maze, Associate Director of Communication Science in CDC’s National Center on Birth Defects and Developmental Disabilities, recalls this personal experience, which is unfortunately a common situation for people with disabilities. Tamara states, “I think it’s that the old sort of archaic belief that having a disability means that…you’re not able to think for yourself. Just because there may be other limitations doesn’t mean that I cannot express my own opinions, and I’m not able to share my thoughts and perspectives.”

A disability may be genetic, acquired due to an injury or illness, occur at any time across the lifespan, be permanent or temporary, or experienced as part of the aging process. The same impairment may impact people in very different ways. It’s important to note that disabilities can be apparent or called a ‘visible’ disability (e.g., amputation, paralysis, cerebral palsy, muscular dystrophy, or down syndrome) as well as nonapparent or denoted as an ‘invisible’ disability (e.g., depression, anxiety, diabetes, lupus, Crohn’s disease, ADHD, or chronic pain). Disability is immensely diverse, yet people with disabilities do have a few commonalities. For instance, for many individuals with disabilities, people around them don’t recognize or understand the emerging challenges that can be experienced day to day. People with disabilities have had to be self-advocates and identify ways to adapt, succeed, and survive in social and physical environments that have not been created or well designed for their needs.

Justin Lushbaugh, Chair, CDC Disabilities Interest Group (an employee resource group), shared, “The strength behind people with disabilities, in terms of what we can bring to the workforce, or any anything else for that matter…we all have these very diverse challenges, and the world was not built for us in mind. In many cases, we have to find a way to make the world work for us, so often times people with disabilities have to find a way to work around that challenge ourselves. I think that for people with disabilities, like myself, it’s so ingrained. It’s become part of everyday life. That’s not to say there aren’t people who care and want to help, but without the lived experience, it’s difficult for a person to help or develop a solution without understanding the challenge, firsthand. Due to the lived experience, people with disabilities have to think outside the box every single day to make the world work for us, regardless of the type of disability. Not everyone is going to have the same challenge, even if they have a similar disability. What each person with a disability has in common is finding a way to bridge the gaps in society so that we can pave our own way to persevere and succeed.” People with disabilities have found that the greatest challenge is typically not their disabilities but issues that arise from people around them and the communities that they live. Thus, strengthening knowledge and awareness about the different types of disabilities is critical for enhancing support for people with disabilities and their diverse circumstances. Moreover, policies are warranted to ensure equal access to opportunities for people with disabilities to be fully involved and thrive within their communities.

In 2023, we recognize the 33^rd anniversary of the ADA and use this opportunity to pause and acknowledge where we are with meeting its initial intent. Acknowledging the anniversary of the ADA is not just about recognizing this important legislation, but it’s also about reflecting on where we are as a nation with valuing, actively engaging, and supporting the disability community and ensuring that we keep addressing current inequities. The ADA is a civil rights law that prohibits discrimination against people with disabilities by providing needed protections for people with disabilities (e.g., employment, education, health care, telecommunications, and transportation), with a few distinct goals focused on advancing equal opportunity, ensuring full participation and independent living within communities, and accelerating economic self-sufficiency for people with disabilities. This federal policy debunked many negative stereotypes for people with disabilities and helped abolish barriers impeding people with disabilities from basic autonomy and integration within their communities. As we embark on this year’s anniversary, I am hopeful that we can enhance our commitment to addressing long-standing discrimination as well as present-day stigma against people with disabilities and more purposely move towards achieving health equity for all. So, where do we go from here?

To start, we must know how to define disability and champion it within our public health work. Most people will experience a disability at some point in their lives. We know that one in 4 adults in the US reports having a disability. People with disabilities comprise the largest minority group in the nation and represent a diverse group that crosses age, race, ethnicity, gender, sexual orientation, and socioeconomic status. Yet, disability has been considered an outcome to be addressed by public health interventions in many public health frameworks rather than consistently viewed as a large and diverse group of people to be proactively engaged and purposely integrated into our ongoing efforts. Demographic variables, such as age, race, and ethnicity are frequently explored and recognized as associated with long-standing health inequities. Yet, for people with disabilities, similar acknowledgement as a salient population for coordinated federal efforts to reduce health disparities has been limited.

To achieve health equity for all, disability inclusion must be a central component. In its simplest form, disability inclusion means people with disabilities should have the same opportunities to independently live, thrive within their communities, and achieve optimal health. Yet, to be clear, disability inclusion involves more than encouraging people with disabilities to be involved and hoping that others around them will be supportive. The ADA publicly directed that people with disabilities should have equal rights to these opportunities and mandated that needed steps should be identified and taken to make them a reality for all. Therefore, as public health professionals, it’s essential to design and implement policy, systems and environmental improvements that facilitate accessible communication and support maximum participation by the disability community in achieving optimal health.

Sara Struwe, President and CEO, Spina Bifida Association, noted that CDC and other public health professionals should be both intentional and proactive with integrating people with disabilities into priorities and related programmatic activities. She stated, “…think about people with disabilities first in what you’re doing instead of the last thing. Because you’re thinking about 25% of the population every time you’re thinking about people with disabilities in your public health efforts,” which emphasizes the need for disability inclusion to be a regular component within public health planning.

At CDC, we are experiencing new momentum around heath equity with advancing CDC’s health equity science and intervention strategy, known as CORE, as well as the development of CDC’s Office of Health Equity to help champion this strategy. Integrating the CDC Chief Disability Officer role into the Office of Health Equity will help elevate disability inclusion as a central component within the agency’s health equity approach as well as across CDC priorities by providing leadership, technical expertise, and scientific support to address health disparities among people with disabilities. Moreover, with CDC Moving Forward, there is a renewed agency focus on achieving heath equity and addressing health disparities experienced by groups that have been historically marginalized, including among people with disabilities. In doing so, health equity tools and resources can be shared and used across the agency, including using the Health Equity Guiding Principles for Inclusive Communication to help support writing in plain language and appropriately framing messaging for specific audiences.

As we acknowledge this year’s ADA anniversary, let it be a reminder that more action is needed. Although the ADA was a key springboard for progress, the disability community continues to face stigma, misunderstanding, and limited support. People with disabilities can share their personal stories to amplify and honor the varied experiences within the disability community while enhancing broader understanding about disability. Yet, we must listen to their journeys, learn from these lived experiences, and work together to create a more inclusive nation.

What will you do this July to further build upon the legacy of the ADA?