A vision for the future - is it already (in)visible?
A vision for the future
- is it already (in)visible?
In this article, we will cite one very interesting and inspiring conversation that was conducted on Briarpatch by Leah Lakshmi Piepzna-Samarasinha. Briarpatch is a Canadian independent magazine, proudly representing free-thinkers, critical journalism and grassroots social movements. Well worth reading!
Leah Lakshmi, on the other hand, is worth getting to know. She is a non-binary disabled writer, curator, justice worker and activist in the transformative disability justice movement, with bourgeois, Tamil, Irish and Gaelic roots. Her tenth book, 'The Future Is Disabled: Prophecies, Love Notes and Mourning Songs', was published recently.
We present excerpts from the interview which, although intended to be about the future of disability, nevertheless tacked beautifully against the wind and drifted through the meanders of the subject. Truly, an eye-opener.
What does the term future of disability mean to you?
"Firstly, just saying that there will be disabled people in the future is subversive. And it is even more subversive to imagine a future in which disabled, deaf, neurodiverse people are alive and well and thriving and are leaders shaping the world. Why subversive? Because, unfortunately, plenty of people, from conservatives and fascists to progressives or radicals, hold firmly to their vision of a future without disability. The former would eliminate us through eugenics, while the latter assume that everyone will be covered by health care, i.e. no more diseases! Either way, they think it's a good thing we won't be there because we are some defective version of that fit, normal, neuro-typical, hearing body and mind that (in their assumption) everyone would like to have.
The UN has been saying for years that 15% of the human population is disabled. Disabled people themselves point out that this figure is probably an underestimate, as many people, when asked about it, reply that everything is fine. I agree with what Dr Sami Schalk, a black, queer, obese, disabled academic and writer, wrote in her tweet:
Due to COVID-19 and the lack of access to healthcare, many people will be or already are disabled. Many of those who contracted the virus, and there were hundreds of millions, are now disabled. Many are living with post-traumatic stress syndrome, depression and in deep mourning and constant tension (what an inadequate word) because of living under fascism, amidst mass deaths, economic and climate crisis."
Her words were met with considerable opposition, but she responded, 'Hey, it's not that bad, it's our chance to remodel the world according to our needs. Now we can keep doing it, and if the majority of the world is disabled, it will be a chance to gain power to create a more just, accessible world.'
In your book, 'Care Work: Dreaming Disability Justice', you endorse Stacey Milbernos' thinking of accessibility as a starting point for building a movement, not as its goal. At the same time, you know that care work can be a trigger for grief and rage at past experiences of deprivation and shame - especially among Indigenous black and brown people. Can you talk about how equality movements can find a safe space for experiencing these feelings while moving towards a better future?
"You have to live through these feelings, despite everything. Stacey and I did a lot of training for Black, Indigenous and People Of Color (BIPOC) organisations, which didn't focus primarily on disability, but their members just wanted to learn. We were testing to see if we could build a co-community. For BIPOC people, talking about these kinds of issues means confronting painful stories of genocide, war, imprisonment, loved ones in institutions, pain and shame.
At the same time, we observed that talking about disability among BIPOC people created a space for transformation and healing. Whenever white people don't limit what you share, you have the courage to say what you need and co-create spaces where this is possible. Accessibility is just great! Knowing that you can say what's on your mind and people won't roll their eyes, knowing that you don't have to abandon activism because you have a body - a fantastic feeling. When there are chairs at meetings, when the work is done in an accessible way, when you don't feel like a failure if you get sick, everything is better then."
One of the hurdles many people face is creating a model of care that does not depend on 'liking'. We talk a lot about communities and other kinship networks, but many of our visions of the future assume access to a closely connected network of people who care for each other. How do we think about building a world that embraces the idea that no one should be rejected?
"It is true that mutual support does a lot more than our state has ever done, but it is also true that you can reach the end of your endurance. In a crisis situation, people may not get the help they need. Sometimes because of isolation and lack of community. But what about when people are violent or in a bad mood and still need and deserve care? Also, even when you have friends and community, they may not have the skills they need to provide care because not everyone can help in a crisis or even lift someone off the toilet."
"I think this is one of the most important questions
that we need to confront as our organisation grows
and the development of disability justice:
What kind of care system do we want to create in the future?"
"I've been thinking a lot lately about the concept of caring libraries/pantries. Fiction can help here, both books already written and those we create ourselves. Ursula K. Le Guin, in 'Disinherited', imagined a non-ideal but quite fair anarcho-syndicalist utopia: capitalism has ended and huge warehouses have sprung up from which everyone can take whatever they need, when they need it. I can imagine what this might look like in the case of care, when the right to care would be a human right. What structures would make this possible? What would it mean to have a system based as much on close relationships as on well-paid and respected strangers?"
Domestic workers and disabled people are fighting together to value care work. The art campaigns Care Can’t Wait' and 'Portraits of Care', created by Hand in Hand and the National Domestic Workers Alliance, are amazing - both by showing the loving, equal relationships between carers and their charges (while also showing how many of them are also disabled!) and by demanding decent and fair pay, benefits and conditions.
These demands are a win-win for both disabled people and those caring for them. By supporting these kinds of organisations, by demanding that governments fund a range of things: from care, the creation of places and care collectives where people can get free help, to decent pay for care work, respite care services, etc. These are all things we can do right now to build the future we need.
There is a pervasive perception that people with disabilities are less worthy of life. Meanwhile, the pandemic has meant that the number of people with disabilities has increased significantly. I think of the idea of crip doulaing (coined by Stacey Milbern), which sees becoming disabled as being born again rather than dying. I wonder what you think a life affirming and forward looking welcome to those who are new to disability identity would look like?
"We need crip doulaing on a massive scale. This is happening informally now, as many of us who have been disabled for a long time have spoken to relatives with a long history of Coronavirus infection. Some organisations like Senior and Disability Action have organised more formal mentoring and support groups, bringing new and long term disabled people together. I also see that many people are finding disabled communities and policies much easier than we did those 20 years ago, because Justice For Disability gave a push, creating arts, policy, communities and resources, so now many people are finding even through TikTok. Still, there needs to be a lot more of it. Without it, we risk a lot of suicide and depression when people becoming disabled has no way of approaching someone who knows how to live slowly, put up with awful doctors and body changes. Something needs to break the 'fate worse than death' narrative."
What does it mean to understand accessibility and caring as very joyful? What can this approach bring to the movement for greater social justice?
"Oh, boy. I mean, let me first say that sometimes caring sucks! Sometimes it's really stubborn, you just have to take out the rubbish and not get overly excited about it. But I started to talk about how caring can be enjoyable, erotic and joyful - which came from my personal experiences when I was too ashamed to ask for help, or witnessed help being given reluctantly or not at all. There was a perception that caring was a terrible responsibility, which stopped many organisations from offering it. When I experienced Creating Collective Access in 2010 - a space for disabled people in BIPOC's queer community where we helped each other, which was fun, loving and creative - everything changed for me."
"A lot of my previous experiences in the movement were about people saying 'this is something we need to do for these people'. But this was never seen as joyful or fun, or as my friend T. Kebo Drew of Queer Women of Color Media Arts Project put it:
'Of course I want my grandmother to be at the film festival.
- Of course I want everyone to be there!'
Accessibility can be a space of deep solidarity,
of extraordinary love and hospitality."
"This is a quote from the Disability Justice Audit Tool, an idea of mine and Stacey's, continued after her death. It's a tool that different groups and organisations can use to learn and reflect on how to practice disability justice. People reviewing it asked to include some stories of the BIPOC organisation, which evolved into the Disability Justice Centre, and here my friend Kebo told his story about the much-mentioned QWOCMAP."
It's a huge queer filmmakers' project, a film festival run by Black, Latino and Asian working class people. They asked themselves, "we can't fix accessibility around the world on our own, so who do we need to partner with to do it?" which led them to work with the Women’s Cancer Resource Center (WCRC), among others. During one of the many recent forest fires in California, QWOCMAP held its annual film programme at the WCRC offices, and participants used the building as a shelter because it had an air filtration system. They also work with the Buddhist association Block Build Be during meetings people feel so loved and welcomed that they are finally learning to express their needs, something they were previously too shy to do.
