Reversing the Systemic Tide to Truly Lift All Boats

Abstract:

Ageism and ableism negatively impact the aging experience, especially for elders from historically marginalized groups (Black, Asian American and Pacific Islander, Hispanic and Latinx, Native American Indian, and LGBTQ+ elders and people with disabilities). This article argues that to enable people of all backgrounds and all disabilities to age with dignity, we need policies and programs that aim to enhance the health and well-being of diverse older adults and their caregivers. At the same time, we must also dismantle long held perceptions and social constructs that perpetuate ageism and ableism.

Key Words:

ableism, advocacy, ageism, disability, inequity, social justice

At the Diverse Elders Coalition (DEC), we have intentionally come together as a united front to improve aging in our communities as racially and ethnically diverse people; American Indians and Alaska Natives; and lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ+) people. We do this through advocating as a coalition for policies and programs that address systemic inequities, and that advance equity for our communities.

This work includes the need to confront and respond to often invisible and pervasive structural ageism and ableism, and their detrimental impacts on elders of different backgrounds and experiences, and on our society as a whole.

Our member organizations—National Asian Pacific Center on Aging (NAPCA), National Caucus and Center on Black Aging, Inc. (NCBA), National Hispanic Council on Aging (NHCOA), National Indian Council on Aging (NICOA), SAGE (Advocacy and Services for LGBTQ+ Elders), and Southeast Asia Resource Action Center (SEARAC)—are experts on the distinctive needs of older adults from the racial, ethnic, political, and cultural communities they represent.

Collectively, we’re working to strengthen policies and programs that will enhance the health and well-being of diverse older adults, while taking an intersectional approach—across racial, sexual orientation and gender identity (SOGI), and American Indian and Alaska Native (AI/AN) lines—to the systemic barriers that continue to undergird persistent disparities and inequities.

While as a coalition we have long been leaders at the forefront of social justice and equity in the field of aging, we recognize that, particularly with regard to disability-rights advocacy, we are trying humbly to learn more about how to be better partners and allies. We know all too well that older adults from diverse communities are often also living with a disability and are too often made invisible.

‘Casual’ Deployment of Ageism and Ableism

The World Health Organization (WHO, 2021) defined ageism as “the stereotypes (how we think), prejudice (how we feel) and discrimination (how we act) towards others or oneself based on age.” It further stated that intersectionality (as defined by Crenshaw, 1989) can have compounding negative impacts, because ageism “intersects and exacerbates other forms of disadvantage including those related to sex, race and disability.” The WHO even went so far as to say that ageism is a “prevalent and insidious” health threat (Span, 2019).

While racism and homophobia and/or transphobia are negative constructs that are part of our everyday vernacular, “ageism” and “ableism” are much less talked about. The same people who may be very careful not to use racist, homophobic, or transphobic rhetoric often casually deploy or accept ageist and ableist language or attitudes. These insidious forms of discrimination are incredibly damaging for older adults, and for our shared perception of aging as a society.

Ageism ranges from everyday microaggressions, like assuming older adults don't understand technology, to more systemic discrimination, like being rejected from a job due to age (Applewhite, 2023; Fulmer et al., 2022). It also is prevalent in healthcare, with nearly 20% of Americans older than age 50 saying they have experienced age-related discrimination, which can result in inappropriate or inadequate care, such as over- and under-treatment, misdiagnosis, and care disparities (Graham, 2021; Rogers et al., 2015).

Ableism is characterized by the practices and dominant attitudes in society that devalue and limit the potential of those with disabilities (National Alliance on Mental Illness, n.d.). This includes beliefs that assign inferior value to people who have developmental, emotional, physical, or psychiatric disabilities. Much like ageism, studies have shown that ableism is also pervasive. It shows up as a lack of accessibility or lack of appropriate accommodations in public transportation systems or building designs. It also can manifest in deliberate attitudes that produce and maintain colloquial expressions devaluing those with disabilities.

More than 30 years after the Americans with Disabilities Act (ADA) was signed into law, we are still far from achieving equality for people with disabilities. This is especially true for people with disabilities who are also people of color and/or whose socioeconomic position could make access to healthcare and other services more challenging. Those with disabilities are forced to navigate systems that were not designed to accommodate all people—including healthcare, housing, employment, education, and criminal justice.

As described by the Council on Quality and Leadership in a report on the relationship between ageism and ableism in occupational therapy, “Older adults are commonly considered incapable and dependent, which parallels ableist conceptualizations of people with disabilities, where there is an emphasis on impairment, dependence, and inability, rather than a focus on the whole person and environmental barriers … . Aging decline and disability are ubiquitous and inevitable, but neither should be the cause for a[n occupational] therapist to think differently of a person’s potential to participate in meaningful life activities” (Friedman, 2021).

We see these damaging attitudes play out every day in our lives and in the headlines. Age (and therefore competency) were regular media topics during the 2020 presidential election, when then-president Donald Trump was already the oldest (at age 74) commander in chief, and then-candidate Joe Biden was 77 (Semones, 2020).

The age debate has reignited in earnest once again with former President Trump seeking the Republican nomination in 2024 against sitting President Biden, who has announced his own reelection bid at age 80 (Galston & Kamarck, 2023).

After Sen. John Fetterman (D-PA) suffered a stroke in the spring of 2022, just days before his successful primary election, he was mocked by his opponent’s campaign and political pundits for struggling to fully express his thoughts (Astor, 2022). Following his election victory and swearing-in ceremony, Fetterman’s office announced in February that he was seeking treatment for clinical depression, further fanning the flames of ableist critics who suggested he was unfit to serve in Congress (Ecarma, 2023).

At the other end of Pennsylvania Avenue, now deceased Sen. Dianne Feinstein (D-CA), was the subject of intense media scrutiny due to health challenges that prevented her from traveling to Washington, DC, for floor votes (Kenen, 2023). Amid rumors of cognitive decline and calls for her to resign, there also were allegations of ageism and ableism from fellow lawmakers on both sides of the aisle defending Feinstein’s right to continue to serve (Blood & Jalonick, 2023; Scott & Solender, 2023).

How Ableism and Ageism Impact Already Marginalized Older Adults

But the impact of ageism and ableism on the communities represented by the DEC is more nuanced—and can be more pronounced—because it is compounded by the other types of discrimination they have experienced throughout their lives. Denny Chan, managing director for Equity Advocacy at Justice in Aging, helped illustrate this in a guest blog post for the DEC by extrapolating the intersectional characteristics of Dorothy, a 72-year-old Chinese American living in Seattle during the COVID-19 pandemic (Chan, 2020). Dorothy watched anxiously as businesses she frequented in her community began closing or suspending operations, leading to feelings of loneliness and isolation. She heard about her neighbor being subjected to verbal and physical harassment by strangers for presumably being of Chinese descent, as then-president Trump openly referred to COVID-19 as the “Chinese virus” (Loofbourow, 2020).

Due to her decision to self-quarantine, Dorothy asked her caregiver to stop coming and avoided her local adult day health center. Because she was Limited English Proficient and received much of her information from Chinese newspapers rather than social media, she was unable to access timely pandemic updates.

Dorothy’s experience captures the importance and compounding effects of intersectionality, within the context of a global pandemic but also more broadly as a person with several identities trying to make her way in the United States. As Chan (2020) explained, “An intersectional framework considers the ways that various forms of inequity operate together, exacerbate each other, and sometimes create unique challenges.”

A Growing and Diversifying Older Adult Population

Not only is the U.S. older adult population growing rapidly, but also it is becoming increasingly diverse. According to the most recent U.S. Census, from 2010 to 2020 the share of Americans ages 65 or older rose by more than a third, the fastest increase in 130 years (Caplan, 2023). Over the next two decades, the White (non-Hispanic) older population is expected to increase by 26%, while older racial and ethnic minority populations are expected to grow by 105%, including:

• Hispanic by 148%;
• African American (not Hispanic) by 73%;
• American Indian and Alaska Native (not Hispanic) by 58%; and
• Asian American (not Hispanic) by 93%. (Administration for Community Living, 2022)

More than one-third of adults ages 65 and older have some form of disability, and many need assistance with daily activities such as bathing, eating, toileting, housework, medication management, financial management, and grocery shopping (Christ & Kean, 2021). In fact, nearly half of Americans ages 75 and older and a quarter of those ages 65 to 74 report having a disability (American Community Survey, 2021). Per the Centers for Disease Control and Prevention (CDC; n.d.), these are the numbers of adults from racial and ethnic groups who have a disability :

• 3 in 10 American Indians/Alaska Natives
• 1 in 4 Blacks
• 1 in 5 Whites
• 1 in 6 Native Hawaiians/Pacific Islanders
• 1 in 6 Hispanics, and
• 1 in 10 Asians

An estimated 3 to 5 million LGBTQ+ people have disabilities, and finding affordable, accessible, and inclusive healthcare services is more challenging for them (Movement Advancement Project, 2019). This is particularly true for those living in rural areas, where LGBTQ+ elders are more likely to have disabilities and be at a higher risk for isolation and discrimination, due to a lack of LGBTQ+-inclusive and fully accessible service providers in their communities.

Furthermore, LGBTQ+ people with disabilities often report difficulties in having their identities fully recognized. In spaces focused on disability, their unique experiences as LGBTQ+ people may not be accounted for—underscoring the need for intersectional approaches.

Demographics of People in Power

The lack of age- and disability-inclusive federal policies—such as a comprehensive national paid family and medical leave program that supports caregiving at all stages of life—is puzzling given that, like everyone, our political representatives also are older. In the current 118th Congress, the average Senator is age 64; the average age in the U.S. House of Representatives is 57. By the end of this year, 56% of senators and 32% of Representatives will be older than age 65 (Stowe, 2023).

Congress also is becoming more diverse (Schaeffer, 2023a). A quarter of voting members in the 118th Congress identify their race or ethnicity as something other than non-Hispanic White. The 118th Congress is the seventh to break the record set by the previous Congressional makeup for racial and ethnic diversity. Overall, 133 Senators and Representatives identify as Black, Hispanic, Asian American, American Indian, or Alaska Native.

There also are 13 openly LGBTQ+ members of Congress, which is another record (Schaeffer, 2023b). The Congressional Equality Caucus—which promotes equality for all people regardless of sexual orientation, gender identity, or sex characteristics, including intersex traits—is now the largest caucus on Capitol Hill, approaching 200 members.

In contrast, in the first-ever quantitative study of disability among American politicians, Rutgers School of Management and Labor Relations (2019) researchers found that an estimated 10% of elected officials serving in federal, state, and local government—a total of nearly 3,800 people—have disabilities. That is more than five percentage points lower than the overall disability rate in the adult population. Additionally, the vast majority of politicians with disabilities are White, non-Hispanic men.

The underrepresentation of people with disabilities in elected office may be tied to systemic ableism as well as policies that deter political aspirations. While people with disabilities may want to work on a political campaign or even run for office, an existing Social Security Administration (SSA) policy, for example, could disincentivize their interest as they will be ineligible for benefits such as Medicaid or Social Security Disability Insurance (SSDI) by exceeding strict income limits. SSA can consider unpaid campaigning to be “work” and therefore reduce or completely eliminate a person’s federal benefits, such as SSDI.

To help address these accessibility and inclusivity issues in federal representation, Sen. Bob Casey (D-PA), who chairs the Senate Special Committee on Aging, has introduced federal legislation to enable more people with disabilities to work on campaigns, run for office, and serve in local government:

• The Removing Access Barriers to Running for Elected Office for People with Disabilities Act would protect federal disability benefits for people with disabilities when they campaign for elected office. The bill would clarify to federal agencies like SSA that campaigning for an elected office does not disqualify a person from receiving disability benefits.
• The AID (Accessibility and Inclusion to Diversify) Local Government Leadership Act would provide local governments with community grants to ensure current and future elected officials with disabilities have access to needed accommodations to perform their duties (Casey, 2022).

“Just like we need diversity in government by way of race, gender, and other considerations in other categories,” said Sen. Casey, “we need to make sure that diversity extends to having elected representatives and others in government who are diverse by way of their disability” (quoted in Loeppky & Green, 2022).

While diversity is improving, there remains a significant lack of adequate representation in the halls of power when compared with the rest of America—except for older adults. Structural ageism and ableism remain rampant.

Deep Structural Roots Require Structural Responses

These statistics reflect systems and structures that were designed to maintain imbalances in power, wealth, and opportunity since our nation’s founding—including colonialism, capitalism, racism, sexism, homophobia/transphobia, ageism, and ableism—to name a few. Over time, policies and practices have served to strengthen and reinforce various forms of structural oppression, rather than upend them.

Even the most well-intentioned policymakers have failed to address and break down these longstanding dominant platforms. That is because those in positions of power are typically White, cisgender, straight men without disabilities, attempting to resolve policy dilemmas while being largely informed by that narrow perspective. This naturally leads to less inclusive policies that tend to favor and sustain White, male, non-disabled privilege.

Representation matters. Lived experience matters. And when it comes to shaping policies that affect all communities, policymakers should seek to understand the ramifications for all of their constituents. For instance, what if we had more policymakers who were people of color, LGBTQ+, and had a disability? Or what if policymakers heard more frequently from their constituents in marginalized communities, and made a more concerted effort to educate themselves on the profound impact of intersectionality?

While acknowledging that affordable digital connectivity is still an everyday obstacle for many older adults, one silver lining of the COVID-19 pandemic was the advent of virtual meetings and hearings. With the closure of government buildings and offices, policymakers had to resort to technology to connect with constituents. This resulted in greater access for people in underserved communities to tell their stories, and for lawmakers to hear them. Instead of making time and paying for travel to their state capitals or to Capitol Hill and working out accommodations for disability to participate in person, they could testify on critical issues virtually from their home or workplace.

However, now that offices have reopened, policymakers are returning to business as usual. Virtual technology was “innovation by necessity” that all levels of government adapted to—and adopted—during the pandemic. By reducing or eliminating it altogether, voices that weren’t being heard will remain silent. At a minimum, hybrid formats should be standardized to help keep marginalized people in the policy debate.

Achieving Inclusive and Equitable Policymaking

Now more than ever, we must abandon the longstanding “one-size-fits-all” approach to policies and practices. This myopic worldview has preserved the ironclad systems and structures we have today, that continue to perpetuate inequities and fail too many (Braveman et al., 2022). By instead looking at policy through an intersectional lens, we will design solutions that are effective for more diverse people and communities with their own nuanced needs.

To fulfill the promise of “Diversity, Equity, and Inclusion,” a discipline of organizational values that grew out of the civil rights movement in the 1960s, we must embrace what it truly means to be diverse, or “different”—across and among age, disability, race, ethnicity, tribal affiliation, language, sex, sexual orientation, gender identity, and sex characteristics. (See Edmunds and Lind, 2021, for definitions of key terms related to diversity, equity, and inclusion.)

Often the most obvious facts are those we tend to easily dismiss or ignore. Each of us is aging all the time, every second of every minute of every day, and with age comes increased disability. If we are lucky, we will all eventually join the very demographic we so callously overlook. We have older people in our lives who are dear to us: grandparents, parents, relatives, neighbors, coworkers, and friends. Many of them we view as our teachers, mentors, supporters, and “knowledge keepers.” We are quick to say, “With age comes wisdom,” yet why are we just as quick to associate negative stereotypes with age? And why aren’t politicians in this demographic doing more to shift the narrative by fundamentally changing how we talk about it?

We need more pre-emptive proposals to enable people of all backgrounds and all disabilities to age with dignity. We need more community-based and community-led designs that expand access to services and build resilience. We need to maximize non-discrimination protections for everyone. And we need to do this through policy advocacy at both the legislative and regulatory levels to hold government accountable.

The Diverse Elders Coalition envisions a world where all older people can live full and active lives as they age. To make that a reality, we need policies and programs that aim to enhance the health and well-being of diverse older adults and their caregivers. At the same time, we also must dismantle long held perceptions and social constructs that perpetuate ageism and ableism.

Didier Trinh is the director of Policy & Advocacy at the Diverse Elders Coalition. He is based in Alexandria, VA.

Photo credit: Shutterstock/Helen Hotson

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