Becoming a Disability Ally in the Aging Network

Editor’s Note: The John A. Hartford Foundation is collaborating with ASA to advance equity in aging by supporting ASA RISE, a 20-week social justice and leadership program for rising leaders of color in aging, and via the development and dissemination of equity-related, partnership-based thought leadership through ASA’s Generations platform. This blog post is part of that series.

“To get resources, you have to have resources. So, for example, the advocacy, the knowledge, the information, the connection, transportation, a phone, the Internet, whatever it is, you have to have a resource to get a resource. And without that, you just stay in this vicious cycle of lacking. So, you have to have a resource to get a resource, and that’s a broken system. “

—Dr. Crystal Hernandez

The monotone Zoom voice stated, “The video is recording.” I reviewed the questions and began an interview with Dr. Hernandez, one of our (the National Indian Council on Aging) American Indian and Alaska Native (AIAN) disability experts. With the red light blinking, I asked, “Could you begin by telling us about your own relationship to the AIAN disability community?”

A simple question, yet in each interview I conduct with an AIAN disability expert, a new story enfolds.

With each answer I discover their “Why.” Why is this important to you? For Dr. Hernandez, her “why” stems from being a parent of a child with a disability and experiencing the cycle of lacking, the cycle of needing a resource to have a resource.

For others, it stems from being a person with a disability. Yet others are in families with a person who has a disability. For me, it stems from navigating a broken system of resources to be the best caregiver I could be for my masani (maternal grandmother) as she aged into disability.

My masani often spoke to me in Navajo and instilled community values—such as caring for our relatives, our elders and for Mother Earth. She even got me interested in her midday soap operas. She never cared for the plot, but instead would tell me about our long history of relatives. She was my caretaker throughout my childhood and toward the end of her life, I was hers.

My personal experience motivated me to build an equitable and accessible future for all.

As the years passed, her memory slowly chipped away. Her stories got shorter as she struggled to remember until one day she couldn’t remember any of them. Instead, she started asking me, “Who are you?” I’d smile halfheartedly and say, “Your favorite grandchild,” while holding back tears. She’d smile back and say, “Oh, I knew that.” Her favorite retort to hide her lapse in memory.

I enjoyed the good, the bad and the heartbreaking times with her. While caring for her, I had to navigate finding caregiving resources. I’d visit different websites, stay on hold with offices, or even travel an hour away to attend a “local” training. My experiences of being a family caregiver, of growing up on a Navajo reservation, of listening to my masani, have led me to the field of aging and motivated me to build an equitable and accessible future for all.

Aging Into a Disability

If you live long enough, you will experience some type of disability.

As people age, they often develop problems with vision, hearing or mobility. Others experience chronic illness like arthritis, diabetes or Alzheimer’s. Some chronic issues may limit a person’s ability to engage in certain tasks or actions or to participate in typical daily activities and interactions. These age-related changes can make it more difficult to move around at home, or even participate in community events. More than 30% of Americans older than age 65, and more than 50% of those older than age 75 have some type of disability.

Although many people who are aging don’t think of themselves as aging into a disability or even being disabled. The lack of disability identity may protect them from encountering stigma against disability. Disability avoidance in older adults also may prevent them from seeking accommodations and developing support and community with other older adults who are aging into a disability.

How to Be a Disability Ally in the Aging Network

Those of us in the aging network serve older adults, but if we don’t also learn more about people with disabilities, we are doing a disservice to the population we serve. As part of an aging network, we can practice equity leadership.

‘Reach out to people with disabilities and offer a seat at the table.’

In the Leading for Equity Framework, leaders navigate the complex territory of equity challenges and develop the capacity to engage in purposeful leadership action. How we SEE, informs how we ENGAGE, which informs how we ACT.

What can we, as an aging network, and help progress to Act?

  1. SEE: Question your views of disability. Lack of awareness about disabilities can lead to unintended bias and stereotypes. How we view and communicate with and about people with disabilities shapes our relationships.

    a. What comes to mind when you hear the word “disability”?

    b. What different types of disability do you know of?

    c. Is “disability” named in all of your diversity lists and not placed at the end as an afterthought?
  2. ENGAGE: Learn more about disabilities and the problems that can arise. There are many resources available online and in print that discuss the unique challenges people with disabilities face.

    a. One resource is Understanding Disabilities in AIAN Communities. The National Indian Council on Aging, in partnership with the National Council on Disability, has dedicated the toolkit to increasing awareness and knowledge of the needs of AIAN people with disabilities. You can hear stories from our AIAN disability experts such as Dr. Hernandez and how they have become a force to be reckoned with. The toolkit is divided into dedicated sections for healthy living, education, independent living, vocational rehabilitation and employment resources, assistive technology, housing and facilities, and transportation. You also can find suggestions for improving services, providing protection, and for organizations that support work with AIAN people with disabilities and their communities.
  3. ACT: Reach out to people with disabilities and offer a seat at the table. Just like reading a recipe is the first step in learning how to cook, reading about disabilities is only the first step in achieving cultural competence. Engaging in conversations with people with disabilities is key to understanding the lived experience of people with disabilities.

    a. Reach out to disability organizations for potential partnerships. A few ideas on how to initiate dialogue are hosting joint events, having a representative from the organizations lead a training session for health professionals, and participating in initiatives by community-based organizations. 

While our AIAN disability experts had different “Whys,” working toward an equitable and accessible future for all is a common theme among them. In an Indigenous community, a person with a disability is not pitied, but instead they are included.

If you were to translate the word disability from an Indigenous language such as Navajo or Tewa, you may not find its equivalent because it does not exist in such Indigenous languages, nor does a story featuring a person with a disability. This may change from tribe to tribe, but inclusion is a theme across all tribes. Inclusion means being a part of a community, whether you are aging with a disability or aging into a disability.

Desiree Lapahie (Navajo) is a data analyst with the National Indian Council on Aging and an ASA RISE alum from 2022. She lives in the Albuquerque–Santa Fe metropolitan area.

Photo: Courtesy Desiree Lapahie.