Graphic with text: Crip Camp: The Fight for Disability and Domestic Workers Rights. Photographs of Judy Heumann, Ai-jen Poo and Nikki Brown BookerThis year marks the 30th Anniversary of the Americans for Disabilities Act. On July 2, Hand in Hand celebrated this landmark legislation with a virtual panel, Crip Camp: The Fight for Disability & Domestic Worker Rights, a discussion with Judy Heumann, international disability rights activist, Ai-jen Poo, Executive Director of the National Domestic Workers Alliance, and Nikki Brown-Booker, Program Officer for Disability Inclusion Fund at Borealis Philanthropy and Chair of National Steering Committee of Hand in Hand. 

Click here to watch a full recording of the panel on Facebook (please note, due to a technical glitch, during the first half of the video, the ASL interpreter is visible only).

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The panel reflected on the disability rights movement through the lens of the award-winning Netflix documentary Crip Camp: A Disability Revolution— which tells the true story of a ground-breaking summer camp that galvanized a group of teenagers with disabilities to help build the disability rights movement in the United States. The film follows campers over the years, and shows how their tireless organizing and direct action activism laid the groundwork for the passing of the ADA.  

Disability Justice and Intersectional Organizing

black and white image of black man wearing a suit in wheelchair speaking in microphone, sitting next to white woman in glasses in a wheelchairIn our discussion we talked about how the disability rights must commit to intersectional organizing in order to achieve justice for the disability community. Judy Heumann started the conversation by reflecting on how the Black Panther Party showed incredible solidarity during the 1977 sit-in at the Health, Welfare and Education office in San Francisco by providing meals to the protesters who occupied the building for 26 days. Judy said, “One of the important aspects of what has been going on over the last 40 or more years, is the expansion of the disability rights movement. It is not yet where it needs to be as far as representation of leadership from black and other minority communities. But we are certainly moving in the right direction. And I think we have also seen as a result of the demonstrations in the Bay Area, those demonstrations not only involve the Black Panthers but many other civil rights organizations and leaders from local organizations including unions and the religious community and women’s organizations that were reflective of diversity of race and disability.”

Hand in Hand steering committee member Nikki Brown-Booker added, “I think, the disability movement really teaches that we need to be inclusive of all movements. I think the disability justice movement in particular is really articulating how intersecting oppressions affect multiple marginalized folks. Such as queer, transgender, disabled and queer folks and demanding the world recognize and simultaneously dismantle all of the “isms.” and that the social justice movement doesn’t force a person to choose or favor one part of their identity in our fight for liberation. So I think, and I really feel like the disability movement is doing this and is really trying to do this well..”

National Domestic Workers Alliance’s Ai-jen Poo reflected, “When I came into the domestic workers movement, which was a multiracial and women of color led movement, I was very much accustomed to looking at the world from the eyes of women and people of color, and putting on my 3-D glasses that helped me understand how hierarchies of racial privilege and gender privilege shape the world around us. But it was not until I became involved with the disability rights movement, that I was able to also look at the world through the hierarchy of power and privilege that ableism sets up, and how that shapes so much of our world. And it is so important, intersectionality helps us put the 3-D lenses on to be able to see the world. And when you look at the world through the lens of disability and race, and gender and class, what it does is it helps you see the world more accurately. More completely. And therefore your solutions are more effective and more inclusive.” 

On Transforming the Care Industry

During the panel, we acknowledged that despite the major victories that have been won on a federal level such as the passing of the landmark ADA, we still have a long way to go. We asked the panelists what they would do to transform the long-term care industry.

Judy Heumann: “Well first of all, long-term care, the official definition of long-term care frequently does not even allow people like myself to participate. So organizations like the AARP and federal employees are eligible for long-term care, if you have got what you could call a pre-existing condition. Nikki and I would never be eligible for that long-term care service.

“And I think another series of issues is the fact that most people really do not understand the relationship and the need for personal assistants, or domestic workers. They don’t have an understanding of the important role that both people play. So I think we are really needing to allow people to understand much more clearly what you a quality program looks like where people who are performing various services for us including things like helping us get dressed and undressed and going to the bathroom and helping with catheter service etc., people do not want to hear about this because we are a society where we really don’t like to discuss these types of issues publicly.

“It is very important for people to understand, now for example looking at COVID, and looking at the number of people who are dying in nursing homes because of the quality of what is going on in the nursing homes, both for people who are working there not having appropriate protective clothing and for the disabled and elderly and disabled people who are living there. We need for people to understand what we talk about when we look at home and community-based services. Home and community-based services that are inclusive of personal assistants but also are addressing other comprehensive issues like accessible housing, the ability to get funding, to be able to make apartments and homes accessible. So that people can stay in their homes. We need to make people understand the value as we have all been discussing, of people who are providing us with assistance that allow me to get up in the morning, allow my husband to get what he needs, allow us to go to work and participate in society. The Medicaid programs that exist around the country are also not uniform, either in wages or in the number of hours that people can get. So we need to allow people to understand that we are looking at elevating the dignity of the worker and the consumer, so that both will have meaningful lives individually and collectively. And the general public in the U.S., and for that matter around the world, really need to look and value the work that people are doing because we are so dependent on it.” 

Nikki Brown-Booker: “We need to think about the end to the institutional bias by the Medicaid and Medicare system, since they favor nursing home care to in home and community-based services. We are literally seeing how this bias is killing people, with an estimate of 40 to 50% of all Covid deaths happening in the country’s nursing homes.

“This overwhelmingly hurts women of color because most of the staff in nursing homes are women of color, and many residents living in nursing homes are also people of color, and many of the nursing homes are located in the communities that are also being deeply affected by the COVID-19. And so I really think that we really need to move toward thinking about how we can provide care for people in their homes and away from institutions.

“You know, part of the way that we do that is we provide a living wage for personal care attendants so that doing the work is something that they, I mean most workers that I have prefer to work in in-home care, but from our current, in our current society, many of them have to choose to do other jobs because they just aren’t getting the benefits that they need. And home care workers are often also women of color and they are living, they are aching poverty wages, which means they need to work multiple jobs to survive. You know, they don’t have as much time with their children or families because they are working so much. And it was not until 2015 that we were finally able to bring workplace protections for domestic workers under the fair labor standards act, and guarantee minimum wage and overtime protections. And so I really think that long-term, the long-term care industry supports and services really needs to be transformed. And that we have some power to really actually affect some of the change in the upcoming elections.”

Ai-jen Poo: “Personal assistant jobs, personal aid jobs, home care jobs have historically been poverty wage jobs. We lose people to other low-wage service industries like retail and fast food because it is almost impossible to make ends meet and pay the bills. And so we have to make these jobs good jobs. 

“The other thing we have to do is we have to make long-term services affordable and accessible to everyone, and especially home and community-based services in the way that Judy described. So I believe that we should have a massive public investment in what I call the care infrastructure— where all of the programs that allow us to live independently and with dignity also support the workforce that is supporting us. 

“We need bold solutions. We have been trying to imagine a program for long-term services at the federal level and I will just say that I know that there’s always a question about the cost and how we pay for it and we just watched, $500 billion in corporate bailouts get passed overnight in Congress and we are spending trillions of dollars on policing, and there is a way in which we have divested from the things that people and work that matters most and invested in all of these punitive systems. 

“I think it is time we demand that we invest in care, not cops and we invest in the accessibility of home and community-based services and good jobs in that industry over military. And so I know that it may seem idealistic, but I actually think that that is the conversation that our movements are having right now. What are we valuing? How do we show what we value in the way that we fund programs, and I do believe that home and community-based services and personal care aides, that care is a public good, and that we should invest in it that way.” 

Click here for a full recording of Crip Camp: The Fight for Disability & Domestic Worker Rights panel.