When asked about the intersection of the disability rights and civil rights movements, I often think of a compelling advocacy image from the 1990s: a disability rights activist is in the midst of a rally. Attached to his wheelchair is a sign that reads, “I can’t even get to the back of the bus.”
This image powerfully captures multiple complex issues: how the disability rights movement built on the model of the civil rights movement—and operated in tension with it; the chronic and infuriating lack of access to tools and resources for mobility due to unaddressed ableism; and broader implications of how inaccessibility changes the expectations that people have about what is possible in life for people with disabilities.
A Brief Note on Language
Self-advocates self-identify in different ways. As such, when discussing disability issues, it is important to be aware of the type of language we use. When connecting with people with disabilities, ask them which language they prefer—that is, whether they prefer person-first language (e.g., artist with developmental disabilities) or identity-first language (e.g., developmentally disabled artist).
Respect for self-identification is crucial for inclusion because language is central to social recognition. As disability advocates argue, the social acceptance of people with disabilities requires full recognition of their personhood—and it’s a pressing issue that must be tackled to address the root causes of exclusion.
Recognizing Structural Barriers and Persistent Biases
In this time of polarizing politics, we can all acknowledge that America has not applied its principles equally to all citizens. Throughout the country’s history, progressive legislation—including the Civil Rights Act and the Americans with Disabilities Act—has been passed in response to collective action, sometimes spanning decades, after inequity and injustice could no longer be denied.
Today, despite such action, disability remains a ground on which to segregate people from the rest of society. Disability still leads to categorical denials of organ transplants, marriage rights, and access to the essential direct care staff necessary for an independent life. Discriminatory practices are compounded when disability impacts people of color, from under-representation in special education programs to over-representation in prisons.
For change to happen, visibility of people with disabilities is key, along with increased awareness of and respect for varied experiences of disability. Deconstructing perspectives rooted in ableism and sanism requires vigilance. Society has traditionally looked at disability through a medical model of inability and dependence. Breaking through to authentic allyship begins with considering our privilege, unconscious biases, and fluency with disability issues and taking steps to broaden our perspective through research, volunteerism, and trainings.
Reconsidering Disability: Intersectionality and Justice-Oriented Approaches
In the past, advocacy movements chose to self-identify in a way that would build consensus rather than attending to the different lived experiences of people with disabilities. Too often, however, structural barriers to access and inclusion are consequences of disregarding our differences. The intersection of ableism with structural racism has further skewed our understandings of the realities of people with disabilities, leading to the denial of their rights.
For example, minimizing identity politics within the disability rights movement may have been a way to advance a broader agenda, but it also contributed to a movement where Black, Indigenous, and other people of color (BIPOC) could not fully participate.
As Jennifer Erkulwater, a professor of political science at the University of Richmond, explained to The Conversation, “Not only did activists in the 1970s fear that assertions of racial identity would divide people with disabilities from one another, but throughout the 1980s, activists posed disability rights as the antithesis of welfare, at a time when the term ‘welfare’ became deeply racialized.”
Conversely, many Black “history makers” may have downplayed their disabilities in the past; today, however, Black disability leaders are increasingly receiving recognition within their communities.
“There is no such thing as a single-issue struggle because we do not live single-issue lives,” the poet Audre Lorde famously said in her “Learning from the 60s” address. Lorde’s insight appears in many discussions of the concept of intersectionality, which focuses on a person’s or group’s different “overlapping identities and experiences in order to understand the complexity of prejudices they face.” The concept’s originator, Kimberlé Crenshaw, intended to provide “a lens through which you can see where power comes and collides, where it interlocks and intersects. It’s not simply that there’s a race problem here, a gender problem here, and a class or LBGTQ problem there. Many times that framework erases what happens to people who are subject to all of these things.”
Expanding on this framework, LBGTQIA+ disability activists of color, including Patty Berne, Stacey Milbern, Eli Clare, Sebastian Margaret, and Mia Mingus, developed the disability justice framework to bring forward the experiences of people who are marginalized within the disability rights movement and disability studies. Disability justice, according to the Disability and Philanthropy Forum, “centers the priorities and approaches of those most historically excluded groups, such as women, people of color, immigrants, and people who identify as LGBTQ+.”
The disability justice framework offers profound intersectional insights into what is required to realize a more inclusive and equitable future. The Associated Students Commission on Disability Equity explains why a justice-based approach is necessary for community members who are multiply marginalized: “…while some people in the disability community can achieve rights and access through a legal or rights-based framework, this privilege is not always available to all members of the disability community, specifically [sick and disabled, queer and trans people of color] SDQTPOC.”
The “10 Principles of Disability Justice” provided by Sins Invalid, a disability justice-based performance project, offers a number of tenets to consider, from attention to “intersectionality,” “leadership of those most impacted,” and “cross-movement solidarity,” to more nuanced concepts such as an “anti-capitalist politics” where “our worth is not dependent on what and how much we can produce.”
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A Crucial Caregiving Workforce: Direct Support Professionals
Applying a disability justice framework enables a better understanding of how isolation and invisibility can be so damaging to marginalized groups—and, sometimes, the people who support them, such as direct support professionals (DSPs). DSPs help people with disabilities lead independent lives, assisting them with essential activities and services like dispensing medication, personal hygiene, and companionship. The role of these essential workers, most of whom are women of color, is often unknown outside of the sector.
The low wages paid to DSPs are the focus of ongoing advocacy efforts by organizations like The Arc of the United States, a national advocacy group for people with disabilities. According to a 2020 survey of approximately 8,800 DSPs conducted by the University of Minnesota and the National Alliance for Direct Support Professionals (NADSP), during the pandemic 43 percent of Black/African American DSPs worked more than 16 additional hours per week, in comparison to 26 percent of white DSPs. The average hourly wage prior to the pandemic was $13.57 for Black/African American DSPs in contrast to $13.98 for their white counterparts.
DSP retention has been “in crisis” for many years, and Covid-19 has only exacerbated matters. In a brief summarizing the findings of their 2021 survey, “The State of America’s Direct Support Workforce Crisis,” the American Network of Community Options and Resources explains, “While many in the private sector pivoted by offering increased wages and hazard pay, community providers—who rely almost exclusively on Medicaid funding and are thus beholden to paying wages that Medicaid reimbursement rates will permit—lacked the resources to fund these kinds of unanticipated programmatic costs.”
Chronic underfunding and disparate data collection have DSP advocates calling on the federal Department of Labor’s Bureau of Labor and Statistics to establish a DSP Standard Occupational Classification (SOC), ensuring that DSPs are accurately classified in labor reports. No SOC, says the NADSP, results in “negative implications for service reimbursement rates,” “lack of data for identifying workforce shortages,” and “devaluation of the workforce.” This call to action has echoed through the corridors of power for many years.
Examining Privilege and Opportunities for Personal Growth
Such systemic gaps and the concomitant lack of urgency to correct them reflect the ongoing need for a wider application of intersectional and disability justice frameworks. Questions about how equity and inclusion can support full citizenship remain. We must also consider how allies can be most effective in ensuring that disability is a component of all diversity, equity and inclusion (DEI) initiatives. Disability inclusion and justice must be a vital part of strategic and personal initiatives for which “social justice is both a process and goal.”
Increased understanding of and fluency with the intersections of race and disability is a starting point for DEI initiatives. In my role as the CEO of the nonprofit, AHRC Nassau, and our family of organizations—which together form one of the country’s largest networks supporting people with intellectual and developmental disabilities (I/DD)—I see every day how a lack of understanding of disability issues is one of the highest barriers to developing new programs or partnerships outside the nonprofit.
Yes, the “R-Word” is largely understood to be offensive, and the media’s representation of autistic adults has improved. Yet, in my experience, potential partners unacquainted with children or adults with intellectual and developmental disabilities often hesitate or stumble over their words, are hyper-aware of their ability to offend, and struggle to acknowledge a gap in their understanding before pivoting to more meaningful engagement.
“I had no idea” is a response I’ve often heard when visiting lawmakers alongside disability self-advocates. These lawmakers had “heard” about I/DD issues; they had received testimonials via email, telephone, and tagged social media posts. However, an in-person visit changes the dynamic and the stakes.
Nonprofits must normalize bringing self-advocates to the table, from the start of strategic planning processes to board of directors’ meetings. Toward this end, nonprofit leaders can also provide opportunities for staff, board members, and other stakeholders to learn and grow—to meet self-advocates, listen to their experiences, and connect with them, and to ask uncomfortable questions that demonstrate gaps in such stakeholders’ understandings of disability and allow them to critically assess their privilege and bias.
Inclusion and understanding go hand in hand. To increase understanding, we must build relationships. One way to do this is through digital spaces and tools that bridge gaps of understanding and geographical distance.
This spring, AHRC Nassau and The Arc of the United States co-hosted an online DEI conference, bringing together people with lived experiences of disability and sector expertise and those seeking more insight into disability issues.
The conference, “Beyond the Comfort Zone: Understanding and Eradicating Injustice, Racism and Inequality in the Field of Developmental Disabilities,” was a free, online training tool intended for use by a variety of stakeholders through May 2023. Some of the conference’s takeaways include:
- The Benefits of an Anticipatory Welcome: “We have to look at psychological safety. True inclusion moves at the speed of trust.”—Atif Choudhury, conference keynote and CEO of Diversity and Ability
- Manifesting Cultural Competence: “Cultural competence really says that these values have to be aligned and that there have to be policies in place, structures, practices, behaviors, and attitudes that would allow everyone within the organization to work effectively cross-culturally.”—Tawara Goode, Director of the National Center for Cultural Competence, Georgetown University Center for Child and Human Development and University Center for Excellence in Developmental Disabilities, Georgetown University Medical Center
- A Perspective on Neurodivergence: “(When) thinking about different opportunities for empowering folks, (remember) that for instance autism is not a processing error. It is a different operating system. We are not broken. We are not defective, typical folks. We are neurodivergent. In my case, or for other folks with other types of disability in the lived experience, we just need empowerment to be able to hone in on our own strengths, talents, and skills, and align with that, and receive the supports and accommodations to be successful.”—Dr. Scott Michael Robertson, PhD, self-advocate and Senior Policy Advisor at the Office of Disability Employment Policy (ODEP), US Department of Labor
Another useful open-access tool, published by the Northwest Health Foundation, is the Disability and Philanthropy Forum’s “Disability Justice: An Audit Toolkit,” authored by Leah Lakshmi Piepzna-Samarasinha and envisioned with Stacey Park Milbern. “Aimed at Black, Indigenous and POC-led organizations (that are not primarily focused on disability),” the toolkit is intended “to be part of the generational shift to end ableism and transform your work through disabled wisdom.” Drawing on a range of sources, from internal audits to disability justice discussions, the toolkit poses many useful questions on topics ranging from “procedures and structures” to “cross-movement organizing” and “collective access.”
The toolkit is meant to be a resource for continual learning. Piepzna-Samarasinha exhorts its users to “start where you are and return to these questions over and over again.” The resource also highlights personal experiences and provides access tools and background information, including case studies, on the disability justice movement. One case study, titled Hand in Hand: The Domestic Employers Network, documents “a groundbreaking approach, bringing together disabled people, including disabled people who are caregivers, and paid care attendants to fight for domestic workers’ rights and the rights of disabled people who need care.” As a result of such alliances, Hand in Hand’s successes include a living wage for care workers in many states as well as cultural and engagement projects.
As resources like the toolkit and conference make clear, disability can no longer be “out of sight, out of mind.” For a more equitable future, we must create shared spaces to listen to people with disabilities and learn to value their varied life experiences while building alliances to advance just policies.
For change to happen, we must collectively answer this call to action. Are you ready?