Recommendations from the Disability Justice Leaders Collaborative

This is the eighth post in a series. Click here to start at the beginning.

Some of the DJLC participants and facilitators at our fourth and final convening.

[Image description: Image description: Disability Justice Leaders Collaborative leaders and facilitators pose together for a group photo. Three sit and three stand in front of a projection screen. Four more are projected onto the screen, their faces captured by their webcams.]

A year ago, we told you we’d post a summary blog after each Disability Justice Leaders Collaborative (DJLC) convening. Well, that didn’t happen. Our apologies to anyone who was looking forward to those. We hope this will make up for it: a recommendations report for advancing Disability Justice from the DJLC leaders themselves.

We’ll summarize the report below. However, if you want to skip ahead to the full report we fully support you! Click here: Recommendations for Advancing Disability Justice in Oregon and Southwest Washington.

Report Summary

In 2017 and 2018, Northwest Health Foundation (NWHF) and the Collins Foundation (Collins) convened the Disability Justice Leaders Collaborative (DJLC). 118 people with disabilities applied to join the Collaborative. In the end, NWHF and Collins brought 14 disabled people of color (POC) together for an introductory webinar and four all-day, in-person/virtual meetings. In addition to being disabled POC, leaders in the Collaborative also identify as queer, transgender, gender non-conforming, youth, houseless, Black, Indigenous, multi-racial, immigrant, refugee, religious minorities, and rural, among other intersecting social identities. Throughout the convenings, they:

• Discussed visions and strategies for ensuring the needs of disabled people are centered in decision-making
• Deepened and collectively built their understanding of Disability Justice
• Discussed how disability-led organizations can work together in new ways with: organizations led by communities of color; existing and new disabled, Deaf, sick and neurodivergent communities and organizations; leadership programs and funders.

They also created a recommendations report. Here are some of the highlights from that report:

Shared Values

• We value the expertise of disabled POC. We are the best experts on our own lives, and we have unique and important contributions to make to the world. There is no one who knows more about disability issues than disabled people. This may not seem profound, but most organizations serving disabled people are not actually run by us. They are run by folks with credentials that do not include lived experience, like parents of disabled people, “professionals” in disability service fields, and other non-disabled people. Lived experience is often more useful than a degree or professional experience.
• When an organization does include disabled people on staff or on its board, they are most frequently white disabled people. Given that ableism also impacts communities of color, this is not okay. We believe the expertise and experience of disabled POC should not just be included, but centered, as long as it is not done in a tokenizing way. Disabled POC need to be leading with full agency.
• We believe disabled people are whole and perfect as we are. Many times, funders and government, as well as family members and others, understand the “problem” of our lives as us — our own bodies and minds (bodyminds) — instead of the systems that exclude us. Our bodyminds are not the problem. Rather, the problem is an inAccessible society, as well as a lack of resources and culturally-competent support. The disability community calls this the “social model of disability.” The assumption our bodyminds need fixing is called the “medical model of disability.” We value the social model. We do not have to change our bodyminds to be worthy of inclusion, love, and justice.
• We value radical, full Accessibility (the conditions that allow disabled people to participate) in our communities — for everyone. Creating an environment where everyone can participate is the first step towards creating a more just world. Accessibility takes resources and commitment. We want state and local government agencies, nonprofit organizations and community groups, and employers to specifically identify Accessibility as part of their business policies. We also want groups to allocate adequate resources for Access by thinking about what is needed ahead of time, not after the fact.
• We value specificity and meaning what you say. Accessibility means different things to different people. When it comes to talking about Accessibility, our lives require specifics to know if something can work for us. For example, telling us “the building is ADA accessible” is not helpful. We need to know specifics like the width of doorways and walkways, whether American Sign Language (ASL) interpretation will be available, whether cleaning products used in the space are scent-free, etc. This need for specificity translates to our political lives as well. Generalities and vague promises do not work. Good intentions aren’t good enough. We need positive impact.
• We value intersectionality and the centering of multiply-oppressed voices, especially those most marginalized, such as queer and transgender disabled POC, Black, Brown, and Indigenous folks, disabled immigrants, disabled sex workers, justice-involved individuals, and all our kindred. We know that we cannot be free until we dismantle all forms of oppression. We value “nothing about us without us”. Those who are most impacted by an issue should be the ones leading.
• People think our main concern is getting the services we need. We are not just recipients or beneficiaries. We are a crucial and contributing part of our collective, greater community. Services are not at the center of our lives. Our contributions are at our center and at the center of our community. It’s also important to note that the services we request should be considered basic needs, much like doors, chairs, or lights, and when we are rejected and othered for requesting these services, it often means we can’t access food, water, shelter, or community, and it devalues our humanity.
• We believe our Disability Justice work is naturally connected to ideas of restorative justice and transformative justice, because these frameworks all hold that everyone is deserving of support, community, and having their humanity recognized. We reject the idea that “some people” are disposable, and we want society to find ways to include all of us. This also describes anti-ableism.

Recommendations

RECOMMENDATION #1: MAKE YOUR ORGANIZATIONS MORE AWARE OF ABLEISM, AND PRACTICE ANTI-ABLEISM AND ACCESSIBILITY

We see a great need in non-disability-specific communities for anti-ableism classes and workshops. We also strongly recommend predominantly white, disability-led organizations take disabled POC-led courses and workshops and engage in long-term cultural competency improvement for challenging white supremacy culture. In addition, organizations should hire disabled POC, listen to them and provide the accommodations they need.

RECOMMENDATION #2: BUILD AN INFRASTRUCTURE OF SUPPORT AND RESOURCES IN ORDER FOR DISABLED PEOPLE OF COLOR TO EMBRACE OPPORTUNITIES, INCLUDING LEADERSHIP

We want disabled POC to be leaders, but we haven’t created the infrastructure to support them to be in leadership roles. Imagine being on a fixed income and/or homeless and trying to direct an organization or run for office. It’d be near impossible. If we want to see disabled POC in leadership roles, we must first talk about supporting disabled POC in living their lives by hiring disabled POC, providing affordable, accessible housing, etc.

RECOMMENDATION #3: FUND LEADERSHIP DEVELOPMENT FOR DISABLED PEOPLE OF COLOR

We recommend investing in the capacity-building of leadership development programs to serve disabled POC. We also recommend more short-term, immediate strategies, such as creating funding streams for disabled POC to pursue leadership development opportunities Accessible to them.

RECOMMENDATION #4: SUPPORT DISABILITY JUSTICE MOVEMENT-BUILDING

It is imperative to support disabled leaders of color to come together and work together. We need time and space to work things out with one another. We ask our accomplices to support our relationship-building.

RECOMMENDATION #5: TRACK DISABILITY-RELATED OUTCOMES, RESULTS, AND IMPACTS

One of the biggest barriers to building Disability Justice is the lack of data we have about disability, especially regarding disabled POC. Information and data are powerful tools. We encourage foundations, nonprofits, and other advocates to begin including disability metrics in their data analytics programs, and research.

Our request to you: Read the full report. It includes quotes from DJLC leaders, concrete suggestions for how to implement these recommendations, resources for further learning, a glossary and more. Share and discuss the report with your peers and colleagues. Most importantly, start working on at least one of these recommendations.

The report contributors: DJLC leaders Arlene Amaya, Grace Eagle Reed, Jennie L. Kamau, Joel Iboa, Lydia Grijalva, Mohammed Nabil Usrof, Myrlaviani Perez-Rivier, Nico Serra, Rory Judah Blank, Saara Hirsi, Tamyca Branam Phillips, Waddah Sofan; DJLC facilitators Leah Lakshmi Piepzna-Samarasinha, Stacey Milbern; Funders Northwest Health Foundation and the Collins Foundation.

Northwest Health Foundation looks forward to integrating these recommendations into our own work. If you’d like to track our progress and help keep us accountable, join our email list and/or follow us on social media.

If you’re working on advancing disability rights and/or justice, we’d love to hear about it. Please comment below!