Centering Disability Supplement
Sponsored by the Disability & Philanthropy Forum

There Is No Justice That Neglects Disability
By US Rep. Ayanna Pressley & Rebecca Cokley

Stanford Social Innovation Review
Winter 2022
Copyright Ó 2021 by Leland Stanford Jr. University
All Rights Reserved

Stanford Social Innovation Review
www.ssir.org
Email: editor@ssir.org

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Supplement to SSIR sponsored by the DISABILITY & PHILANTHROPY FORUM

There Is No Justice That
Neglects Disability
Achieving diversity, equity, and inclusion means
putting disability justice in every policy discussion
and making it part of the continuing struggle forcivil rights.
BY US REP. AYANNA PRESSLEY & REBECCA COKLEY“Disabled people live at the intersection of all systems of
oppression and social justice issues. There isn’t one issue or one
intersection where you will not find disabled individuals advocating
for or experiencing the effects of those issues.”— Daphne Frias, youth activist, organizer, storyteller,
and peacebuilder.

L

ast July marked the 31st anniversary of the Americans with
Disabilities Act (ADA), a historic civil rights law. We have seen
progress in the expansion of access to services and spaces enjoyedby Americans, but the disability community continues to experience above-average rates of poverty, incarceration, disenfranchisement,
and social segregation.
And yet there is hope. We have witnessed how effective an intersectional approach to organizing is, particularly on matters of racialand environmental justice. We have seen a revitalized commitment
from leaders in various sectors, including government, business, andphilanthropy. The moment has come to advance and recognize thepromise of disability justice in the United States.
We work in different sectors—government and philanthropy—butshare the conviction that by centering disability we have an opportunity to create a just society that is more accessible and inclusive
for everyone. To make this belief a reality, our efforts must center
conversations that have been relegated to the sidelines as well as thevoices of expert advocates who were previously siloed. Government
has addressed disability for three decades, with the ADA serving asa guide. The philanthropic sector is beginning to recognize disability
inclusion as a core element in its justice work and acknowledges thateach grantmaking organization is at a different stage in its disability
inclusion journey. Today we are sharing our personal experiences toreflect on the potential of an intersectional, cross-sector approachthat will advance justice for all.
If government is to serve the people, then disability justice must be aframework we bring to every policy discussion.
Rep. Ayanna Pressley: In January 2020, I disclosed my alopecia diagnosis
in an interview with The Root. The disability community welcomed me.
Viewing my diagnosis as an asset and an opportunity to shed light on
US REP. AYANNA PRESSLEY represents Massachusetts’ 7th Congressional District. She is an advocate,policy maker, activist, and survivor.
REBECCA COKLEY is the US disability rights program officer for the Ford Foundation, a former official in
the administration of President Barack Obama, and a leading civil rights advocate.

2

CENTERING DISABILITY • WINTER 2022

disability issues, members of the community reached out to me fromvarious organizations and coalitions. In my approach to legislating, I
have always prioritized intersectionality, but my dialogue with disability
activists illuminated new ways in which the disability community has
been systemically marginalized in public policy. Today, we are still in thecivil rights movement, and the struggle for racial and disability justice
are woven together. Some commentators give the impression that Rosa
Parks sat, Martin Luther King Jr. spoke, John Lewis crossed a bridge, andthen our full liberation was realized. But our struggle continues, and ourdestinies are bound together.
Far too often in the daily work of government, people are noted as
numbers on a grid. But people live in intersectionality, not in checkedboxes. Encouraged and emboldened by generations of activists, I am
proud to be part of a new generation of leaders on Capitol Hill who
take an intersectional approach to disability justice. This effort starts
with recognizing that the disability community is not a monolith.
From health-care access to employment, and from marriage rights
to COVID-19 recovery, every policy issue is a disability issue.
In formulating my legislative agenda, I consistently look for theways in which disability is affected by the proposals on which I am
working. For example, discussions of the racial wealth gap that do
not explicitly address the challenges facing Black and brown disabled
people leave behind so many individuals and do not paint an accurate picture of the economic injustice these communities face. Amid
the current national reckoning on racial injustice, we fundamentally
believe that disability justice must be part of an intersectional conversation. We must affirm that Black disabled lives matter. Nearly
half of the individuals murdered by police in the US have a disability,
and Black girls with disabilities are criminalized in US schools at fourtimes the rate of their white peers, beginning as early as preschool.
We know that our systems are deeply broken, and together, we must
legislate and invest in healing, justice, and accountability. We must

The Numbers on Disability
Statistics show that disability is a natural part of the humanexperience. Philanthropic foundations must recognize this reality in their work.

26% (1 in 4) of American adults have some type of disability. In the United States, 61 million people live with a disability,
which can be lifelong or acquired at any time. US and internationallaw protects the rights of all people with disabilities including
physical, sensory, intellectual, developmental, and mental healthdisabilities, as well as chronic illnesses.
15% of the global population lives with a disability.
More than one billion people globally live with a disability. Eighty
percent of persons with disabilities live in developing countries.
27% of people with disabilities live in poverty, comparedwith 12% of people without disabilities. Disabled people are
more than twice as likely to live in poverty than those without
disabilities. Poverty can increase the likelihood that a person withan existing health condition becomes disabled through inacces-

Rep. Ayanna Pressley
and Rebecca Cokleysible environments or lack of access to needed health services.

1 in 5 women in the world have a disability. Disability is part ofdiversity and intersects with all identities, including class, gender,
race, ethnicity, and sexuality. Being disabled disproportionately
affects those living in poverty, women, and people of color. People
with disabilities are three times more likely to experience violence
than those without disabilities.
1⅓
3 of COVID-19 survivors have long-haul symptoms. People

with disabilities face increased risk of contracting COVID-19,
dying from COVID-19, as well as experiencing poorer healthoutcomes, whether or not they are infected with COVID-19. With
one-third of COVID-19 survivors in the United States experiencing long-haul symptoms, there is a “rise of long COVID as apersistent and significant health issue” that may lead to disability, according to the US Departments of Justice and Health andHuman Services.
If philanthropy is to build a more just and equitable society, it mustcombat ableism in its own institutions and practices, and recognizethat disability is a key element in its work.

start with honest conversations about where matters stand and whatchanges must follow.
If the philanthropic sector is to advance social justice, diversity, equity,and inclusion, then we must recognize that disability is a key elementin our work.
Rebecca Cokley: Growing up in the disability community with parents
who were also little people, I saw disability as a beautiful thing. Bodies
were amazing in their diversity, and people of all genders, races, andcultures found myriad ways to communicate, live, and exist. Based on
the definition in the ADA, the disability community is large enough toencompass children in Flint, Michigan, who are approaching 5,000 days
without clean water; Asian American victims of hate crimes; motherswith postpartum depression; and COVID-19 long-haulers. That the ADA
definition of disability emphasizes the activities of daily life shows that
disability is not about a diagnosis but about its effects on your life. Whenpeople assume that being a little person has the greatest impact on myquality of life, they’re wrong. It’s actually my migraines, and that’s okay.
In my role at the Ford Foundation, I am responsible for developing
strategy for our US disability rights program, the first of its kind at
the foundation. In 2015, when the Ford Foundation issued its declaration to move its work to challenging inequality, disability advocatesspoke out about the glaring absence of a disability lens. In the past,
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Supplement to SSIR sponsored by the DISABILITY & PHILANTHROPY FORUM

organizations have rarely responded to this type of response, in nosmall part because the disability community was not considered
formidable or worth listening to. But in this instance, Ford Foundation
CEO Darren Walker expressed his commitment to “embracing risk
and reflecting honesty,” which led the organization to examine disability bias, investigate the history of philanthropy’s negligence andharm to the community, and determine a course of action to address
historic harms with solutions.
We must seize this moment to advance and recognize the promise of
disability justice in America.
Rep. Pressley and Cokley: The disability community has lived segregation, from specialized educational settings to community service
programs and restricted employment opportunities. Our demand tophilanthropy, government, and other sectors is not to be treated asa special case. Government and foundations alike must fund efforts
to develop housing proposals to ensure a supply of affordable andaccessible housing. Funders exploring ways to organize efforts incriminal justice reform must remember that 60 to 80 percent ofpeople who are currently incarcerated have a disability, including
individuals who acquired a disability while incarcerated. No effective
approach to reentry, abolition, or de-escalation will be successful if
disability is not included.
Disability is a cause and consequence of poverty. Philanthropic
organizations that are committed to fighting poverty and inequality in the United States or globally will never meet their goals aslong as disability is missing from their work. Even if a foundation
is discomfited by the idea of putting up a neon sign that says “Wefund disability,” any philanthropic entity that addresses inequality or
injustice in effective and comprehensive ways must include disability
in its work. Any demographic data that is collected to understandpopulations served, affected, or employed must include disability iftrue diversity is to be reflected in the numbers.
Similarly, the federal government must move away from thebureaucratic excuses of the past, which required disabled folks to fit
into specific boxes when it comes to data and benefits. This bias has
resulted in public policy that does not acknowledge the community’s
diversity or recognize the fundamental rights of all people to pursue
liberty, justice, livable wages, marriage equality, and fair housing.
The novel coronavirus has surfaced many existing inequities, andthe impact on the disability community is clear. More than a third of
all deaths tied to COVID-19 come from congregate settings, where
people with disabilities make up a large percentage of all residents.
More than one-third of individuals impacted by the novel coronavirus
are likely to experience long-haul symptoms, a brand-new categoryof disability. COVID-19 has exacerbated existing mental illnesses
due to increases in anxiety and social isolation, and for many individuals, there have been new diagnoses. The need for flexibility andrethinking how we work, how we receive health care, and how welearn has required us all to take a moment to ask ourselves why
there isn’t greater accessibility and flexibility to support how we live
so that we may thrive.
Together, we can meet the moment, center individuals who aremost impacted, and rebuild as a more just nation if we see disability
as part of the continuing struggle for our full civil rights and liberties. We recognize that there is no justice that neglects disability. s
4

CENTERING DISABILITY • WINTER 2022

Time for Philanthropy
to Confront Ableism
If philanthropy is to build a more just and equal
society, it must combat ableism in its own
institutions and practices.
BY SANDY HO & JEN BOKOFFS A N DY ’ S I N T R O D U C T I O N“What kind of funding are you looking for, and do you have a budget
for this year?” a staff person from a foundation asked me. We weretalking about the 2018 Disability & Intersectionality Summit (DIS). It
came as a shock when I, the event’s founder, landed a meeting with thisfoundation to discuss DIS.
It was one of my earliest interactions with a foundation as a community organizer and I recall trying my hardest to impress this staff
person. As a disabled and queer Asian American woman, I felt suchshock partly because our ableist society has conditioned me andmillions of disabled people to wait and be told what would be bestfor our lives, rather than asking directly for what we need.
Ableism is a system of oppression that devalues and discriminates
against people with disabilities. Individuals as well as institutions,policies, and communications can be sources of ableism.
JEN’S INTRODUCTION

For years, I have been part of and an observer to ableist gatekeeping
in philanthropy. From a “go, go, go” work culture to the invitation of
proposals and office and event design, the philanthropy sector is notwithout its share of ableism. I’ve spent much of my career operating insystems that have not honored what my body needs to be successful,
because of both structural ableism and ableism that I’ve internalized.
As a person with chronic illnesses, I didn’t know about accommodations I could request or boundaries I could set, because I didn’t see themmodeled around me. When I once tried to share my experiences with
pain, fatigue, sensory sensitivity, and digestive needs at a former teamretreat, I was met with disbelief and laughter. The awkwardness sent a
clear message: It’s easier just to keep it to yourself.
But it shouldn’t be awkward. The philanthropy sector has waved
the banner of “diversity, equity, and inclusion” for years, and yet ableism continues to affect staffing and talent development, knowledge
generation and sharing, and governance and funding. I have eveninadvertently perpetuated ableism. For example, I never knew to ask
direct reports if they needed accommodations, and I have readily
spoken at inaccessible events. I’ve been on my own learning—andaction—journey to change this.
A B L E I S M I N O U R H I S TO RY, P O L I C I E S , A N D S T R U C T U R E S

Philanthropy is no stranger to the ways that ableism is deeply embedded
SANDY HO is the founder of the Disability & Intersectionality Summit and a research associate at The
Lurie Institute for Disability Policy. Find her on Twitter at @NotYourAvgHo101.
JEN BOKOFF is the director of development at the Disability Rights Fund and Disability Rights Advocacy
Fund and blogs at The Jeneralist. Find her on Twitter at @jenbo1.