I just finished reading „Black Disability Politics“ by Sami Schalk and wanted to share some things I’ve learned. This is a very important book for activist groups and movements and I would encourage everyone to get a copy (it is also available for free)¹! Sami Schalk examines how the subject of disability was dealt with in past and present Black activist organising. To put this review into perspective, I am writing this as a white, queer nonbinary, neurodivergent and physically non-disabled person born and living in western Europe.

There is often a preconception that Black organizing historically had less of a focus on disability. However, this is in part because other concepts and terminology were used than in the white-dominated disability rights movement. When we look at the theory and praxis of Black groups and movements, we see that in fact they often addressed the needs of disabled people in very practical ways that show a lot of understanding of the barriers and oppression they face.

Historical examples of Black disability politics

The author looks in depth at some examples, like the logistical support of the Black Panther Party (BPP) providing food for the 504 sit-in in San Franciso in 1977², and their ongoing support for incarcerated and sectioned psychiatric patients as well as their holistic understanding of psychiatric insitutions as an extension of the prison-industrial complex.

The other main historical example examines how the National Black Women’s Health Project (NBWHP) served and included Black disabled people without stigma throughout their various activities, notably in their self-help groups, and in the subjects dealt with in their publications.

As well as examining the strengths of these organisations in regards to their approach to disability, Sami Schalk does not shy away from analyzing their weaknesses and limitations. One criticism that stood out to me was the lack of awareness about the usefulness of the common identity of being disabled, and how that can facilitate solidarity and common struggle against ableist institutions and forms of oppression.

The book mentions several factors that probably played into this initial lack of focus on disability as an identity within Black communities and organising.

– The white-dominated disability rights movement often failed to address intersecting systems of oppression. This lead to much of their activism not addressing the realities and needs of Black disabled, Deaf, and neurodivergent people. There was often a focus on the needs of cis white male wheelchair users (who were often the people in positions of power within the movement), that to some extent still exists to this day. Recently I also read „This Bridge Called My Back“ for the first time, and there are certainly parallels with the critiques of white feminism, as well as of other movements where white people are more dominant and visible.

As their realities and needs were not significantly represented, many Black disabled people could not identify with the disability rights movement, and did not feel like it was something for them. Racism was and is still very present in society, and it is no surprise that white-dominated political movements still propagate racist behaviour and attitudes. I won’t expand further on this point now but for more detail, read the book!

– There were, and still are, concrete dangers involved for Black people openly identifying as disabled. These include for example the higher risk of being forcibly sterilised or used for dangerous medical experiments. Also being even more marginalised than one already is for being Black. Because of internalized racism and ableism, it could also lead to stigma and marginalisation within the Black community.

– This also has to do with racist stereotypes of Black people, which include a lot of overlap with ableism, for example that they are lazy or inferior.

– Gatekeeping and bureaucracy in the medical establishment as well as from white disabled people are also mentioned as a reason.

Black disability politics in the present day

After examining these past examples, Sami Schalk then contrasts this with current day activism, drawing on interviews with several Black disabled activists and cultural workers, as well as actions and communiques from groups like the Harriet Tubman Collective³.

In the modern time, there are an increasing number of Black disabled people who identify as such and see that as something important for themselves and their organising. At the same time, there is a strong awareness that one must not have to identify as disabled in order to be part of or benefit from disability politics. (some people also mentioned being berated by white disability activists that people should identify as disabled).

Sami Schalk mentions being strongly influenced by the Disability Justice movement⁴, a framework developed by disabled people of color, disabled queer people, and disabled queer people of color that remedies a lot of the shortcomings of the disability rights movement.

One of the 10 Principles of Disability Justice is leadership of the most impacted. Those who have the lived experience of a certain form of oppression know best how it works and should be the first to be listened to in how to overcome it. That means Black disabled people should be centered and visible in movements, whether that’s disability movements or in Black organising.

There is still a lot of ableism in many Black activist groups, just as there is still a lot of racism in many white-dominated disability rights groups. Without addressing these problems, these groups can never hope to achieve freedom from oppression for everyone.

Accessible and sustainable ways of organizing

Another important theme that was evident especially in the last chapters was about accessible and sustainable ways of organising, and how Black disabled activists and groups have developed and incorporated techniques and approaches to this in their praxis. I particularly liked the association Sami Schalk makes between mainstream activism’s tendency to push the bodymind without consideration of its natural limits of energy and resources with the way mainstream society is treating people and the earth as if it is a limitless system with infinite resources. In both instances, this is resulting in unsustainable ways of acting and living on the planet and in our bodyminds, leading the world to climate collapse and resource depletion, and our bodyminds to burnout.

Slowly, care practices that originated in BIPOC disabled organising are spreading to other movements. We should encourage this and at the same time remember to honour where they come from.

Sami Schalk mentions one example of how people made a point of communicating their acceptance and even celebrating when „self“-care (in this case a therapy session) got in the way of commitments to movement activities, and how the group adapted around that to take on the tasks. Of course this example stands in stark contrast to many activist groups, where at best nothing would be said, at worst there would be accusations of putting oneself before the „greater good“ of the cause.

Some of my own reflections after reading the book

For me this subject was especially interesting as for over a decade now we have had quite a big focus on „sustainable activism“, care, and burnout within activism. Our collective came together in the ZAD NddL, an occupied zone in struggle against the construction of an airport near Nantes, France. There, like in other places of struggle we had been part of before, we were seeing how burnout and unsustainable ways of organising were weakening our movements and leading to many friends and comrades dropping out. After the evictions of winter 2012, we started work on our film on the subject, „Radical Resilience“⁵. Not long after, one of us became chronically ill, and because of this we didn’t manage to finish and release the film until 2020.

Examining why so many issues with burnout were cropping up, it became more and more evident to us over time how crucial a collective understanding of care was. Without creating networks of care and support within our movements, any attempts to become more sustainable or regenerative are little more than cosmetic. We need to understand the complicated weaves of privilege and oppression, of different forms of marginalisation, so that care is available to everyone in our groups. And to understand the behaviours and attitudes we reproduce that exclude people, that create unreflected hierarchies that mirror those in the society around us.

At the same time, in the capitalist mainstream we saw the individualistic narrative of „self-care“ being propagated more and more. A narrative that works the best for the most privileged, who have the resources and the time to dedicate to this kind of care. At the same time, it tells those who burn out because they do not have these resources that they are at fault for not „doing enough self care“, while ignoring structural oppression.

The tendencies to see taking care of ones needs as a private issue are not new. They are a part of the effort to break our collective solidarity and strength, to isolate us, to uphold the capitalist system. We noticed it ourselves, dealing with chronic illness and trying to stay part of the movements where we were active for so long. It became impossible for us to overlook how disability and (chronic) illness were seen as things for the individual, for their family or for their partners to take care of, and not as something collective.

We wrote about this in our zine „Caring Movements: Chronic Illness and Activism“⁶, because we saw how ineffective and excluding our movements became through this lack of collective care. Struggling to find words and concepts, we tried to push for change in the contexts we were part of.

Around 2019 I first read „emergent strategy“⁷ by adrienne maree brown, a queer Black disabled author and activist. I was immediately struck by the very holistic and eloquent understanding and portrayal of these concepts and many more. This was a very different approach to „sustainable activism“ than that which I was familiar with. I see this as a great example of why leadership of the most impacted is so effective, and so necessary.

As Sami Schalk points out, it is important to look at our past and present movements, to identify their strengths, but also to look critically at their limitations to see how we can better organise. For me that means we need to continue the conversation, to listen to each other and learn. Especially to listen to the most impacted people. To honour and credit the source of this knowledge and wisdom, and to use it not just for the benefit of more privileged people, but for the liberation of all of us. Including by making our organizing accessible. By breaking down barriers, unlearning racism, ableism and all other forms of oppression, and growing webs of collective care!

Footnotes

1 Black Disability Politics is available to buy : https://www.dukeupress.edu/black-disability-politics

or as an open access PDF version to download for free: https://library.oapen.org/handle/20.500.12657/62545

2 https://www.innow.org/2021/02/12/black-panthers/ (DE)

https://disabilityhistory.org/2021/12/19/the-504-protests-and-the-black-panther-party/ (EN)

3 Harriet Tubman Collective https://ccpep.org/wp-content/uploads/2021/04/Disability-Solidarity.pdf

https://www.facebook.com/HTCollective/

4 To learn more about Disability Justice, a good place to start is to read the 10 principles of Disability Justice by Sins Invalid and Patty Berne https://www.sinsinvalid.org/blog/10-principles-of-disability-justice

5 Radical Resilience

6 Caring Movements

7 emergent strategy https://adriennemareebrown.net/