“Nothing about us without us:” An intersectional history of disability policy advocacy and activism

The following are the notes for a talk I am giving next week, I wanted to offer the text to people who will not be well-served by Zoom’s often inaccurate captioning system. In this text, I also provide descriptions of images used in the MSPowerPoint slide deck I will use in the talk. A PDF of that talk is available at the bottom of this page if you want to see the images (that each have alt-text).

Register here: https://salemstate.zoom.us/meeting/register/tZ0tduuuqjopH9K62I42umvIwKczYvJU5JO2

A group of disability advocates in orange shirts reading disability rights are human rights. at the US capitol.
Disability policy advocates (Image credit: The Arc)

Thank you very much for the opportunity to speak at the Berry Institute of Politics, I am honored to be here today to give an abbreviated history of U.S. disability activism and policy advocacy over the last century, which I will do from an intersectional perspective that is so often lacking. I am also proud to be here as a member of the disability community myself and as someone who has participated in legislative advocacy processes.

The quote at the head of my title is “nothing about us without us,” the rallying cry of the disability rights movement – although more recently it is evolving into “about us, by us.” This quote is central to the wish of the disability communities that they are seen and heard in the policy making and policy implementation processes.

I’d like to note that Frederick Berry, for whom this institute is named, was a tireless advocate for disability rights and empowerment, and so I dedicate this talk to the idea that all of the people in attendance today can take away some inspiration for supporting disability rights, advocacy and activism.

In this talk, I will introduce you to key facts about the disability community, will review aspects of disability oppression and discuss disability activism and advocacy over the past century. I am taking special care to lift up disabled people from the queer communities, communities of color and the women’s movement – people who don’t often get credit for their involvement in disability advocacy and activism.

Before we begin, I want to model a best practice for running meetings, and that is the provision of an access check. Does anyone have any access needs that we might be able to accommodate? Ideally, an access check is paired with an announcement requesting accommodation needs ahead of time, so I hope these are things you will do moving forward. For example, people may need images, such as this one with a blue and white disabled icon, described verbally. We are also sharing a link to a website with note for the talk and a PDF with alt-text images.

I’d like to start by talking about the language that I am using in this talk, identity-first language. There is a large debate going on in the disability communities about disabled peoples’ need to choose between person-first language and identity first language, which are described in this graphic. Although some people still prefer PFL, many feel that it stigmatizes disability, when they are proud of their disability identity and culture. This has led to the use of IFL and the rejection of euphemistic and insulting terms such as differently abled. For non-disabled people, this should translate into not imposing language choice on disabled people, and honoring each individual’s choice.

But let’s start with a definition of disability so that we are all on the same page.

Now, disabled people make up 26% of the U.S. adult population, or 1 in 4 Americans as this graphic shows, so we are everywhere.  4.3% of children are disabled. And it is important to remember that disability transcends all the social identities. This image depicts rates of disability in various racial and ethnic groups, for example, 1 in 4 members of the Black and African American communities are disabled. This highlights what Black scholar Audre Lorde noted when she said “there is no such thing as a single issue struggle because we do not lead single issue lives.” We also know that disability is more prevalent among women and members of the queer communities.

So the way I have been talking about disability reflects what is known as the medical model of disability. This cartoon image will help us to understand that. As you can see, the wheelchair user is faced with a set of stairs. On the left is a callout balloon saying that the legs are the problem. On the right hand side we have the response of what is known as the social model of disability, noting that the stairs are the problem – a more empowering perspective. This highlights the difference between focusing on an impaired body part and a disabling environment. These models are important to the disability community, so it is good to know about them and to let them inform our work.

And these models are in response to what is known as the personal tragedy theory of disability, or the idea that you are better off dead. While there are very difficult aspects of being disabled, it does not rule out a good, rich life. Do these two murderball players in this picture look like they aren’t engaged in life and having a good time? I present this image as a juxtaposition with the slide’s title, and I ask you to consider how you may have looked at disability as a tragedy.

All of this relates to the fact that the disability communities face discrimination, exclusion, stigma, high rates of victimization and overall ableism on a regular basis. So let’s talk about what ableism is. Based on the medical model, we think about people needing to be fixed vs. the environment needing to be fixed, and this links to discrimination and prejudice. Disability activist  and scholar Talila Lewis notes that ableism is inextricably linked to anti-Blackness as well as eugenics, misogyny, colonialism and more.

In response to this ableism and oppression, the disability has reacted by focusing on disability pride, fostering people’s positive disability identities – linked to long term emotional well being. And they have also fomented a burgeoning disability rights movement, which we will discuss. This requires allies to the disability community to develop a better disability lens. So to do that, let’s start by looking at how some of the most egregious aspects of ableism have played out in our society.

Starting in the 19th century and not ending until the 20th century, with the last being overturned in 1975, many municipalities had so called “ugly laws.” The picture shows an image of a blind woman on the book about this. The laws called for “diseased, maimed, mutilated, or in any way deformed, so as to be an unsightly or disgusting object” (Chicago City Code 1881).

During the holocaust in WWII, the Nazis actively rounded up disabled adults and children as part of Action T4, putting them in concentration camps for un-consented to experimentation and eventually killing them via either starvation or in gas chambers. Real pictures of disabled children and adults in the program are pictured here.

Medical experimentation also took place right here in Waltham, MA (among many other locations in the US) starting in 1949 with no parental consent or participant consent. Participants such as those in the photo were fed irradiated oatmeal to determine the effects of radiation on the human body. This was organized by MIT and Quaker Oats company.

We also saw the horrific treatment of a range of disabled people in large, institutional settings, documented here in photos of naked institution residents languishing and in despair. Many of the people I have seen in today’s group homes still have trauma reactions based on these experiences.

More recently with the attention to the disproportional involvement of people of color in law enforcement related killings, a three year national study was conducted by the Ruderman Family Foundation, which determined that 50% of all of these deaths involved disabled people. This instigated Black and brown disabled activists to coin the phrase “Black disabled lives matter” which is pictured in this image.

A conversation on disability oppression would not be complete without a mention of the fact that 26-70% of the disability lives in poverty, according to the Census Bureau and other sources. The realities of life in the disability community act in a cyclical fashion with the experience of poverty, creating a vicious cycle as pictured here. Unemployment is rampant in the disability community, especially.

So that is a tiny snapshot of disability oppression in our society. Before we move on to talking about how the disability has engaged in activism and policy advocacy, there is one step you can take, and that is to examine your able-bodied privilege.

So, moving on, I want to give you an intersectional analysis of disability policy advocacy and activism over the last century, with a heavy focus on federal level policy advocacy. It is important to look at the movements intersectional, because too often the history has been whitewashed, for one. The disability civil rights movement’s white leaders are also known to have had trouble making space for communities of color, women and the LGBTQIA communities.

We see that there are 3 phases of disability activism, consisting of single issue activism focused on disability alone, movements in which people from different disability groups organized together and more recently a disability justice movement that has addressed the diversity within the disability community in terms of social identities such as race, gender and sexual orientation.

During the Great Depression, the League of the Physically Handicapped staged a die-in when they were excluded from employment by the Public Works Administration despite their capacity to work. They won access to jobs. The image is of a compass, the logo of the PWA program.

We Are Not Alone (WANA) was founded by a group of patients at Rockland State Hospital in New York in the mid to late 1940s. Their goal was to provide support and advice and help others make the difficult transition from hospital to community given the social isolation they experienced. They are now part of Fountain House which operates nationally and is pictured here.

In the late 1960s-early 1970s we saw the birth of the independent living movement which advocated for policies that embraced comprehensive vs. fragmented services, community inclusion and the notion that disabled people are the experts on their own lives. Although the movement is often said to be founded and spearheaded by Ed Roberts, the white man in this image, many people of color and women’s movement members were part of this effort. Some of them are pictured here, Donald Galloway, Johnnie Lacy, both Black disabled activists, and Kitty Cone, the feminist activist and mother in a wheelchair pictured with her son.

Judy Heumann, pictured on the right of this slide, a white disabled woman, is also often credited as leading the Independent Living movement – but left out of history is Brad Lomax, a Black disabled activist pictured on the left side of the slide. Lomax was instrumental in the partnership between the Black Panther Party and disability activists who took over a government building in the 1970s to protest the lack of implementation of Section 504 of the Rehabilitation Act, our first disability civil rights law. He continued to be a major player in disability policy advocacy for decades.

Later in the 1970s, the Independent Living movement attempted to do better, by fostering a presence in majority-Black Oakland, CA (Schweik, 1979). They also did cross-disability organizing and offered services in Spanish, Mandarin, Cantonese, and Tagalog (Draper, 1979, p. 1).

In 1977, we saw the development of the Rainbow Alliance of the Deaf, with founding members pictured here. They wanted to encourage and promote the educational, economical, and social welfare; to foster fellowship; to defend their rights; and advocate their interests concerning social justice; to build up an organization in which all worthy members may participate in the discussion of practical problems and solutions related to their social welfare as queer deaf people.

Deaf people pictured here at a protest at Gallaudet University also fought for disability representation during the “Deaf President Now” protest in 1988, resulting in the appointment of a Deaf president. However, this action was critiqued for excluding Deaf people of color – part of a larger pattern in Deaf organizations that had banned Black membership until 1965. Black Deaf activist Carolyn McCaskill pictured here was part of the group Black Deaf Advocates that formed in response to this.

Perhaps most famous in the history of disability activism is the role of the organization known as ADAPT, that led the fight to get the Americans with Disabilities Act of 1990 passed. On the left we see an image from the famous “Capitol Crawl” where disabled people threw themselves out of wheelchairs to crawl up the capital steps, as there was no other way to access the building. On the right we see a protest full of disabled people in support of this law. While many think this civil rights law solved the problems of the disability community, it has no enforcement arm, and the implementation of the law is spotty. Opponents of the law from the business lobby are fighting to undo the rights bestowed under this law as we speak.

Black disabled activist Lois Curtis, pictured here, was instrumental in the 1999 Supreme Court case that led to established principle that disabled people have the right to live in the community if appropriate.

Over the course of several decades, members of the disability community began to point out that much of the disability rights movement was epitomized by a single-issue focus and a focus on white people, for starters. In 2005, a group of mostly queer disabled people of color organized to form the disability justice movement. The disability justice movement centers the priorities and approaches of people who are most historically excluded, such as women, people of color, immigrants, imprisoned individuals, and LGBTQIA2S+ people (Berne, no date). Their ten principles are listed here on the left, and two of the founders, Mia Mingus and Stacy Milbern, are pictured on the right. Current policymaking should honor the disability justice principles, according to the disability community. I will provide a handout on the principles in chat.

In 2017, we saw ADAPT return to the national stage to oppose the Health Care Freedom Act as unworkable and irresponsible, pointing to the mass coverage losses likely resulting from cutting hundreds of billions of dollars in federal health care funding. Images of those protests in the US Capitol are pictured here. Disabled protestors were physically removed from their wheelchairs, dragged out of protests and arrested as you can see in these images. The efforts of the disability community protected many beyond that community from lack of access to health care coverage.

More recently, disability justice movement advocates have taken on issues that disproportionately impact disabled people of color, such as the Department of Labor’s rules that allow for payment of sub-minimum wage. A disabled person protesting this situation is pictured here. Advocates are working towards the development of incentives for states not to participate in these actions as part of the Build Back Better Act which has been passed by the House. 

Disability justice advocates such as Lori Long, pictured here with her partner, have also fought for disability marriage equality as disabled people lose federal benefits such as Supplemental Security Income and Medicaid if they marry a non-disabled person. The Marriage Equality for Disabled Adults Act was proposed to address this.

Another major campaign fought by disability advocates nationwide relates to child protection policies at the state and federal levels. This action targets the inclusion of disability as an automatic reason for the termination of parental rights, and also addresses the ableism that is rampant in the implementation of child protection policies. This images shows a group of disabled policy advocates, myself included, testifying before members of congress in the US capitol.

Finally, I want to talk about a disability policy advocacy movement that was started during the lat presidential election by disabled activist Alice Wong, pictured here, and Andrew Pulrang, disability columnist for Forbes Magazine. #CripTheVote non-partisan campaign was designed to engage disabled voters – 26% of the US population – to be more involved in political campaigns. The term “crip” is traditionally considered a slur, but it has been reclaimed for use within the disability community as a point of pride. This movement was also designed to incentivize Presidential candidates to speak to the people on their plans for disability policy. This social media based movement has led to significant community building in the disability world, and resulted in most Democratic and a few Republican Presidential candidates meeting with the disability community on disability policy issues via social media platforms. This is an ongoing movement at the local and national level.

I want to leave you with a set of take home messages for your disability policy advocacy.

It is important to move beyond the “personal tragedy theory of disability” in your viewpoint. Add to this the importance of seeing disability as a cultural group and social identity. Checking your able-bodied privilege on an ongoing basis is key. This will all help you to hone your disability lens, so to speak. You will do well to honor disabled people as the experts in their own lives in the policy process. And as you advocate for policy, take into account intersectionality, whether the policy promotes community inclusion and self-determination and honor the nothing about us without us principle.

Finally, I would like to offer the CEU word for those of you taking the quiz, it is PRIDE. The link to the CEU quiz is here: https://www.surveymonkey.com/r/3KMH2K9

Here is a copy of my presentation, please do not use or distribute without attribution: