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Crip Survival Networks: Disabled and Undocumented Communities Resisting Ableism and Abandonment

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Maria R. Palacios in conversation with Julia Watts Belser

January 23, 2023

A Latina woman with long dark hair wearing a shirt that says “Piss On Pity” looks directly at the camera with red lipstick and a broad smile. She is seated in her wheelchair in front of a fence, at a protest or direct action. There is a large vehicle behind her, with indistinct letters on the side.

Maria R. Palacios (she/her) is a polio survivor, disability activist, author, and artist known as the Goddess on Wheels.  Maria’s work includes various genres of art ranging from rebellious poetic storytelling, passionate spoken word performance, and sarcastic disability cartoons that call out ableism.  One of the Capitol Crawlers from the iconic 1990 march that passed the Americans with Disabilities Act, Maria is unafraid to share the survival stories of disabled people the world wants to forget.  Since 2007, Maria has been an artist and performer with Sins Invalid, a disability justice performance project that incubates and celebrates artists with disabilities, centering the work of artists of color and LGBTQ/gender-variant artists.  A proud Latina immigrant disabled woman, Maria serves as Sins Invalid’s Spanish Language Outreach Coordinator and her artistic work lifts up the resilience of crip survival.

Julia:  During Sins Invalid’s performance work, “We Love Like Barnacles: Crip Lives in Climate Chaos,” you delivered a spoken-word monologue that has haunted me ever since.  In your piece, “The Forgotten,” you lift up the experiences of disabled people who survived Hurricane Harvey in Texas in 2017.  You tell the stories of people who were abandoned both before and after the storm, and you push back against the message that disabled people need to “be prepared.”  Could you say more about that?

Maria:  As disabled people, most of us are living in a constant state of survival.  Living like that doesn’t allow you the opportunity to prepare.  Because you’re always drowning.  You’re just trying to hold on, day to day, month to month.  We have to climb mountains just for the chance to exist.

When you have so many obstacles, when the odds are already against you, how are you supposed to prepare for disaster?  We learn to live in denial.  Because denial is way easier than always trying to prepare for something you cannot prepare for.  No matter how hard you try, you’re always fucking gambling. You gamble with your health.  You gamble with your safety.  You gamble with your survival.

Julia: That’s one of the costs of structural violence.  Disabled people face so much hardship as part of our everyday lives.  Most of us are already scrambling to make it work day-to-day, to navigate systems that weren’t built for us.  What are we supposed to do, in the face of a hurricane?

Maria:  How do you prepare when you live in poverty, on a fixed income, in a house that’s falling apart already?  How am I supposed to do even basic preparedness, like boarding up my windows?  I can’t do it myself, and all my non disabled friends are dealing with their own emergency preparedness.

And emergency food?  Right now, everything’s so expensive.  Putting food on the table costs an arm and a leg. You have to be privileged to be able to go shopping and not think “Oh shit, I can’t afford this.”  So what bill do I not pay, in order to buy emergency food?  And in what world is emergency food more important than food on my table right now?

Julia:  How can you stock up for an emergency, when you’re already short right now?  We’re given so much advice about disaster that just doesn’t work, that isn’t connected to the reality of people’s actual lives.  Are there other common disaster preparedness strategies that fail disabled people in practice?

Maria:  Right before Houston had a terrible freeze, grocery stores assigned a shopping day for seniors and disabled people.  But if people didn’t look old or disabled, according to their ableist standards, they’d turn you away.  So disabled people who had attendants shopping for them, myself included, had to go without.

I remember people on social media posting about making their purchases on Instacart.  I remember being so cold and hungry and feeling so resentful of people who were protected by their privilege, who just assumed that everyone else could access the same resources. You can’t order Instacart on food stamps.

Julia:  So much advice for preparing for disaster assumes that you’ve got a robust bank account, that you’ve got your own car, that you have access to resources and support systems that most disabled people can’t count on.  What would it take for disabled people to get real support during disaster situations? 

Maria:  The first thing we need to realize is that it’s not disabled people that need to do more. Because we’re already doing everything we can. 

At those trainings about emergency preparedness, some man in a three piece suit is always asking, “Do you have extra food?  Do you have a way to get out?  Do you have this?  Do you have that?”  

They always say, “Have a place to go.”  But where am I going to find a wheelchair accessible place to go?  If you’re thinking about a hotel, forget that.  Who has the resources to pay for a hotel, and for how long?

What I want to ask them is,“What are you doing for me?”  Not just on paper.  Not just some fake evacuation drill that makes them think that they’re prepared.  Why don’t you start by implementing programs that include us?  Because when we think in terms of disability justice, we have to start with this: Absolutely nobody left behind.

Julia:  That principle has to be at the heart of our work.  Because disabled people do get left behind all the time.  Even when we make it through the storm, there’s no guarantee we’ll get the access and support we need in the aftermath of crisis.

Maria:  Imagine losing your wheelchair in a disaster.  It happens.  I have witnessed it.  Don’t even think your insurance – if you’re lucky enough to have it – is going to give you the equivalent of what you had.  And if your community steps up?  They’ll find anything on wheels and call it good enough. They’ll try to fit you in wheels that make you feel like you’re the wicked stepsister in the fucking Cinderella story.  No matter how hard you try, it’ll always be the wrong size. 

Julia:  People don’t realize how personalized our wheelchairs are, how precisely they need to fit our bodies if they’re going to support our actual needs.  Everybody’s body is different.  That’s the whole point.  Wheelchairs aren’t one size fits all.

Maria:  My friend survived a disaster, but her wheelchair didn’t.  She spent two weeks in a hard plastic chair, only to be given a wheelchair that was too big for her body.  Everybody was acting like, “Oh yeah, we did it!”  But they didn’t do it.  It took her forever to get a chair that was like the one she’d had before. 

Especially if you’re brown, queer, or undocumented, preparing for a disaster means preparing for the possibility of being left without the very thing you need to move around, to communicate, to breathe.

Julia:  Maria, you’ve done a lot of work with undocumented disabled people, fighting against the ways an unjust immigration system intensifies the vulnerability and violence people face.  Can you say more about those experiences?

Maria:  The stories of undocumented crips always hit me the hardest.  I know someone who was undocumented who was living at a car dealership.  He was a wheelchair user with a spinal cord injury. They were allowing him to stay there.  I mean, they were charging him rent!  But he could use the restroom after the business closed, and it was an accessible place where he’d have a roof over his head.  

When Hurricane Harvey struck Houston, the dealership flooded.  Nobody came for him.  First responders didn’t even know that he was there.  So he stayed.  He’s living in that flooded place, wearing clothes that have been soaking in contaminated water.  He got an infection from that sewer water.  He ended up in the hospital, and his leg had to be amputated.

What makes me so sick in situations like this, is that none of this had to happen.  People should not lose a limb, because they couldn’t be safe.  People should not lose their lives.  Nobody deserves to be abandoned.

Julia:  No one deserves to be abandoned.  Absolutely no one.  Our systems fail disabled people in so many ways, but the risks are even higher for people who are undocumented.

Maria:  I was undocumented for years and years.  To be undocumented is just so brutal.  It’s living in hiding.  Living in fear.  Living a lie.  But undocumented people are some of the most courageous people I know.  It’s that courage, that willingness to live that keeps us moving.  

But so many of the systems disabled folks rely on are unavailable to undocumented people.  They are terrified of paperwork, of anything that might bring their names and their identities to the attention of the authorities.  A lot of undocumented disabled people end up dying of curable conditions, because they don’t have access to health care.  Some religious communities offer services and sanctuary, but religion often deals out ableism in the most punishing kind of cultural way.  

If you get displaced and you’re undocumented, you lose whatever job you had under the table.  So you end up in a shelter, scared shitless of being discovered.  But you make it work.  You find shelter, you eat whatever can of green beans you can find.  You do what it takes to stay alive.  

Julia:  Maria, that’s such a powerful reorientation.  As a disabled person with a lot of privilege, it’s easy for me to fall into the trap of assuming that undocumented disabled people’s lives are nothing but hardship.  But disabled folks face those assumptions all the time.  

It’s an awful feeling to have someone see your life as nothing more than tragedy. 

Maria:  I have a lot of friends who are disabled and undocumented, and I see them thriving.  They’re laughing, they’re joyful, they’re living their lives. 

They survive because they know they need each other. This one makes homemade jello, this one knows who to call when the pipe breaks, this one’s husband is a wonderful mechanic. Everybody works under the table and they fucking survive.

Julia:  That really resonates with a core value in disability community: a tangible commitment to interdependence in action.  Mainstream American culture champions independence, but I think it’s this recognition of how much we need each other that is going to keep us alive.  Interdependence is what builds community.  That’s what sustains us.

Maria:  Back in 2005, Harris County in Houston decided that they would no longer provide catheters, diapers, and other essential supplies to disabled people who are undocumented. If you’re undocumented and diabetic, for example, you could no longer get needles for your insulin.

Undocumented people did what they needed to do for survival.  They took to the streets selling water, selling chocolate, selling their fucking soul to the devil. They created a network to exchange pee pads and catheters and all the shit that disabled people need in order to stay alive. [1] Because if you need a catheter, you can’t survive without one. So when the system refuses you that, for being undocumented or for not having insurance or whatever the fucked up reason it is, then you do what disabled people do – you call on one another to survive.

Julia:  When it comes to climate change, I think these are the skills that are going to keep us alive, this capacity to show up for each other and figure out how to make it through.  I know you’ve lived through disaster yourself.  Has that been a part of your own experience?

Maria:  When Houston had a terrible freeze, my kitchen pipes broke and my house started flooding. But I physically couldn’t shut off the water.  And my mom is almost 80!  So no one in the house could do it.  I posted on Facebook that I’m flooding, and my friends from the city immediately sent volunteers.  It took them two hours to get here, but they got here.   

You know, I was really lucky.  Not everybody has those kinds of connections, and that’s a real privilege I have.  But even though most disabled people don’t have those resources, many of us have built our own networks through disability communities. 

Julia:  These kinds of informal disability networks are crucial.  We’re the ones who know that we have to look out for each other.  Even if we can’t do the lifting or the carrying, even if we’re not cut out to do the physical work, we practice community care in other ways.

Maria:  You know, disabled people may not always be able to fix your pipes.  We may not be able to give everyone a backpack with supplies, or a food card.  Realistically, we don’t have the resources.  But what we can do is make sure the world doesn’t forget our humanity. The most important form of advocacy we can do for one another and for ourselves is to remind each other of our humanity.

Unless we’re there to remind the medical-model world that our lives have worth, that our lives have value, they’ll kill us.  They don’t need lethal injection.  All they have to do is pretend we don’t exist.  All they have to do is deny us access to our wheelchairs, deny us access to housing… I mean, they already do that.

We don’t need a disaster for the world to try to kill us.  We’re already there.  That’s why a crip survival network is so fucking important.  Because without each other, we’re dead.

Julia:  We need each other.  And I feel like the nondisabled world needs us too, even if it doesn’t often recognize it.  The world needs disability wisdom.  It needs our resourcefulness and our adaptability, our fierce insistence that all of us deserve access and care.

Maria:  As a disabled person, I pretty much learned everything I know about being an empowered crip from other crips.  One thing about the disability community is that we welcome newcomers.  So when new disabled people come–and it’s unavoidable, they will come–we are the ones who will be there.  We know what it’s like to be oppressed.  We know what it’s like to be marginalized.  We’ve been forced into invisibility.  We’ve been denied access to our own body.  

Until society understands that our needs are not special needs, until society recognizes we deserve to get exactly what we need, until disabled people get to participate in decision making, shit is not going to change.

The world sees us as such a burden.  It’s so painful.  And part of the pain of ableism is that we start to internalize all those lies.  This society tries to throw us away.  So we have to be the ones to recognize each other’s value.  We have to lift each other up.

Credits:

Maria R. Palacios and Julia Watts Belser, “Crip Survival Networks: Disabled and Undocumented Communities Resisting Ableism and Abandonment – Maria R. Palacios in conversation with Julia Watts Belser.” Disability and Climate Change: A Public Archive Project. January 23, 2022.

Curated and edited by Olivia Noreke and Julia Watts Belser

Photo provided by Maria R. Palacios

Image description: A Latina woman with long dark hair wearing a shirt that says “Piss On Pity” looks directly at the camera with red lipstick and a broad smile. She is seated in her wheelchair in front of a fence, at a protest or direct action.  There is a large vehicle behind her, with indistinct letters on the side.

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