Living Hope Begins
In 2005, immigrants with spinal cord injuries living in Houston were notified by the hospital district of Harris County that they would stop receiving their catheters, diapers, and wheelchairs because they were uninsured, and, being undocumented, ineligible now for public healthcare. The irony cut deep: Houston is home to the largest medical center in the world, home also to the hidden class of these who have broken their backs to help build much of its infrastructure.
But survival has a strange way of birthing solidarity, and soon the injured were organizing. They sold flowers in streets, raffled off televisions in churches, organized car washes and sold food to gather resources and buy medical supplies that they would then distribute and share amongst themselves. Little by little, they found themselves populating a coordinated human linkage map that could locate wheelchairs and catheters on demand and also be agile to run to every suffering crack lost to mainstream visibility in the onslaught of mass disaster.
When Hurricane Harvey devastated the region in 2017, Living Hope found itself serving these crevices in a way no large agency was or could. Hundreds of handicapped people were caught in flooding and ruined homes, their isolation and inability to flee compounded by undocumented status and fear of contacting the official rescue channels. Living Hope’s volunteers stretched and sought out those who were slipping through the cracks, staunching the existential immediacies and embarking on long-term recovery work. Volunteers scrounged up cash grants for those whose houses had been ruined. They troubleshooted when case managers disappeared, finding new ones, setting up better support systems. They found and matched partner organizations to coordinate rescues and distribute medical supplies. They provided legal counsel when ICE had been contacted.
Triaging a crisis that was consuming Houston’s public powers, Living Hope began distributing catheters, diapers, wheelchairs and medical supplies to anyone who would show up – including veterans and other U.S. citizens unable to find aid through official channels. Volunteers gained confidence and verbal fluency in exposing the public policy barriers to meaningful recovery, including a lack of affordable and safe housing, a lack of shelters equipped for persons in wheelchairs, fear of ICE enforcement that discouraged those in need from seeking refuge in a shelter, language barriers for those seeking food, archaic processes for receiving recovery aid and a preference for homeowners over renters.
This fluency has more recently matured into credibility, a credibility that is finding its way into the halls of public policy in one of the most watched cities of the American future. Living Hope has persuaded the Houston Commission on Disabilities to establish a committee for immigrants and refugees with disabilities. It is campaigning to make Houston’s MetroLife service wheelchair-accessible, as well as advocating for more bilingual bus dispatchers. The mayor’s advisory council welcomed Living Hope to the “Welcoming Houston” initiative, which seeks to identify concrete local policies to make the city more friendly to immigrants and refugees. Living Hope has even made inroads in persuading local police to be more circumspect in collaborating with immigration officials.
But at the core of Living Hope’s power is a simple if rare covenant, a true community that embodies precisely the kind of intersectional safety net our collective future of natural disasters will require in the decades ahead. The kind of community that they’ve come to experience as essential. The kind that holds the potential to convict our peculiarly American crisis of solidarity and birth a different and more beautiful way.
Solidarity in the Scars
19-year-old Guillermo De La Rosa was just helping a friend remove an engine from a pick-up truck when life as he knew it ended. Removing the transmission, he was surprised to find that the truck had nothing holding its tires, and it began rolling off the ramp. As he turned around to try to quickly get out of the way, an iron rod sticking out of the truck struck him on the neck, piercing his spinal cord. Doctors told him he would never be able to move anything beneath his shoulders again.
Francisco Cedillo was playing pool in 1999 when a waitress alerted him to the fact that some guys at another pool table had gone out to mess with his car in the parking lot. He went out to see what was going on, when he came upon them stealing the car stereo. They argued for some minutes before the owner of the bar came out and scared away the interlopers. Thinking they’d completely run off, Francisco turned to speak to his pool buddy. Suddenly he felt a blow at his back. It was an iron cross typically used to remove car tires, hitting him on the vertebral column. His companion left him lying there for two hours until 2 AM, until a woman leaving the bar saw him and called an ambulance. The next day he was told he would never walk again. His fiancé broke off their engagement within weeks.
Maria was in a car accident with her boyfriend, their wedding a month away. She broke two of her vertebrates while her boyfriend died en route to the hospital.
These are just a few of the fractures that lie beneath what is known as Living Hope.
“When you have an accident,” says Guillermo, “the first thing you think about is wanting to die. Living Hope has helped many people continue living.”
WATCH / Members of Living Hope share their reflections on life anew
Guillermo is now the organization’s communications lead, responding to disaster calls, reaching out to constituents. Francisco helps to locate the legal, cultural and linguistic barriers that block those in need from receiving services. Maria is now mother to a precocious four-year-old and Living Hope’s data navigator – she locates food banks, rent assistance, free medical care and anything else that can help fill the security gaps.
“After an accident we are born again,” says Guillermo. “It is as if we are children again. The new life may be more difficult, but we can live it well and we can be useful to humanity.”
A support community turned 501(c)3 organization, Living Hope is almost entirely run by those who themselves have been disabled by injury or disease. It is a supply delivery service that has become a civic pioneer, an advocacy power and, perhaps most crucially, a family.
Saving that Which is Saving You
“Sometimes you are at home in pain, depressed, and you come here and forget everything,” says Guillermo. “Everything changes when I arrive at the office and work with my colleagues.”
Each one of the staff members endures physical pain, sometimes excruciating. We’re gathered in the supply garage on Westview Drive for a simple lunch of Subway sandwiches and Coca Cola, and winces regularly shadow otherwise peaceful faces.
“In the first moment,” Guillermo says before taking a bite, “the first years I was always depressed, not wanting to go out. I did not see the sun, nobody saw me. I was ashamed.”
Over time Guillermo began to realize that the isolation was killing him. He started to meet others with similar injuries who appeared happy, who possessed a kind of joy he didn’t know was possible. Gradually he joined their number, melting and maturing as his companions’ countenances and purposeful work displaced his despair. “It is a job to accept disability,” he says now. “It is difficult, but you have to accept it in order to get ahead.”
The organization empowers each person’s sense of agency, immediately granting a sense of belonging while also providing roles for each person’s gifts and capacities. There is no room for pity here; rather than settling as a set of temporary stilts for survival, Living Hope conceives of itself as a vehicle for permanent change.
“Living Hope should always be at the table with FEMA when disaster strikes,” says Jade Flores, who works with West Street Recovery and helps organize immigrant families to fight deportations. She’s partnered with Living Hope on multiple occasions, and believes this community of disabled immigrants has an unrivaled perspective into the cross-section of barriers that make it impossible to find assistance when floods, freezes, and pandemics overwhelm a region. There is something about Living Hope’s intimate familiarity with physical handicap and civic condemnation, she says, that breath oxygen into tired debates and command attention.
But it’s not always easy to be a border stalker, to embody hotly contested “issues” as persons, as a community. Living Hope straddles two populations whose respective marginalization has grown louder and more disturbingly unresolved in recent years. Volunteers are affected by the immigrant debates but don’t fit neatly inside of them. They are invited to speak at national conferences focused on disability rights, but they can also get pulled over while driving their custom wheelchair van and risk deportation.
“This is a group of people belonging to communities who have been under attack throughout history,” says Pancho Argüelles, the outgoing executive director. “We have a horrible history in this society of dehumanizing and marginalizing people with disabilities. And then there is the plight of immigrants more recently – particularly Latinos and Mexicans – who have experienced greater targeting by policies that criminalize them and create these everyday conditions of fear, stress, marginalization and oppression, all of which translate into actual suffering and pain for members of the Living Hope community.”
Dr. Alane Celeste-Villalvir earned her DrPH in Management, Policy and Community Health at the University of Texas. She volunteered with Living Hope for some years while doing some participatory research with them, and now serves as a member of the board of directors. “The more you learn about Living Hope and the journey of some of its members,” she says, “the more appalled you are with our healthcare system.”
They have limited access to regular health insurance as undocumented persons. They have limited access to preventative care. “And even if members had access to resources (for instance, if they were employed),” says Alane, “as undocumented persons, they couldn't get into the market and buy health insurance, and not having health insurance puts you at risk of anything and everything. These policy-level barriers set Living Hope members up for worsening disability, morbidity, and premature death. No one who comes to this country deserves to face these odds.”
Raise all this with Pancho, and rage at the layered callousness of injustice consumes his eyes. And then they soften again, the dialectic between anger and solidarity reproducing one more cycle.
“But from this constantly extreme experience,” he says slowly, deliberately, “life has found a way to create power, to create access to services.”
Accompaniment in Practice
At the core of Living Hope is a philosophy that has deep roots in Catholic social thought but really emanates its power in practice: acompañamiento - accompaniment. Pope Francis has popularized the term. These men and women live it.
“Accompaniment can never be about parachuting in to save ‘the other,’” wrote Pancho in a prescient essay back in 2019. “It is not about discovering an issue, problem, or community, and then colonizing, jumping to propose solutions that reduce the people to a problem without asking for their own definition of the problem or their ideas for solutions. It is rather always about sharing power, risks, and resources so that together we can heal, grow and thrive.”
It is very rare to see this kind of sensitive humility embodied in contexts of urgency today, let alone the skills needed to put the virtue into practice. It sounds more obvious than it is.
“Accompaniment,” Pancho continues, “particularly with communities that have experienced the trauma of oppression and marginalization, is a process that starts by acknowledging the full humanity and dignity of the people we want to accompany. Recognizing (a.k.a. reorganizing our cognition) that there are systems of power, ideas, policies, beliefs, and attitudes that dehumanize some and privilege others is needed if we want to be able to join in the efforts of a community to transform its complex history and context.”
Accompaniment, in other words, demands the creation of the conditions for a dialogue to be sustained among equals. It’s about displacing oneself and one’s privilege to go meet people where they are. It’s a long obedience in the same direction, foregoing the gratification of quick-fix solutions to instead dive into the messy intentionality that effective solidarity requires.
And messy it can be. Pancho served Living Hope as its Executive Director for nine years, and for most of that time was the only person on staff not in a wheelchair. His relationship with Living Hope’s core team has been a long and ongoing journey of mutual rehumanization, healing and transformation.
“My privilege is an epistemological obstacle,” he reflects with no small degree of mourning. “I walk into the office. They roll into it in their wheelchairs. I have a college education and can speak English; none of them do. I’ll go meet at a labor union with some of our leaders to talk about an alliance, and forget to ask if they have accessible bathrooms and a ramp to get in the building. I go to a webinar or a conference having asked my compañeros to be my colleagues, only to forget to demand that the venue hire interpreters or get the materials translated. In all these instances, members of my group show up, and they find they have no opportunity to participate. I find I am constantly trying to do this work for inclusion and transformation, only to reproduce exclusion.”
His definition of today’s moral bogeyman, “privilege,” is simple. “Tell me what you can forget about, and that speaks of your privilege.” He’s not hung up on it in an unproductively guilty way, but the experience of walking alongside his compañeros at Living Hope has forced him to become aware.
Some years ago, Pancho was scheduled to have a phone call with one of Living Hope’s staff members. The member was ten minutes late to the call and Pancho became frustrated, feeling like the member wasn’t taking their collaboration seriously. Finally he arrived on the call and said “I’m sorry I’m late. I fell from my chair. I'm alone in my house, so I had to crawl to the front of my house, open the door, and see if somebody walks by so that they can help me back in my chair."
Pancho still chokes up here. “That was a profoundly kind of humbling moment, no?” he says. “Like, he fell from his chair, but he actually threw me off my horse. I just kind of sat in there for a moment, feeling thankful for his dignity, his perseverance, his commitment, and how he was casual about it, like, ‘Yeah. It's okay. Let's talk. Let's have the conversation.’ And we had the conversation while he was on the floor and I was sitting in my chair.”
Here Pancho gets theological. “The mystery all the time is that we can get off our horse like St. Paul, but the horse is there every day and we get back on it every day. It truly takes a collective building of a community where we can mirror one another with love and also with truth. A person has to be soft. We can be hard and also loving as we strive to set limits on all the way our privilege is getting in the way and sneaking us back onto that high horse.”
He pauses again.
“Like all love stories,” he says at last, “I didn't find them. I was found.”
The Beginnings of Disaster Justice
Living Hope testifies to what can be born after devastation. It is a collective of born-again leaders who, out of necessity, have drawn a map and stocked a toolkit for how to sustain hope and dignity when events beyond human control erase one’s prospects and all that came before. The drama is rarely a single arc. Death to self and to the past are not one-and-done deals. Each day in its acute precarity offers a new invitation. Each brush with the threat of deportation while serving others, each dread of a new infection caused by expired catheters and an inability to receive proper healthcare a chance to renew one’s faith that God will yet deliver and provide.
And La Esperanza Viva lives up to its name; joy is their daily bread. This community sings songs, shares sandwiches and respond to all who knock, taking pains to get to know each story and the most subtle of pain points.
But can daily consistency and tailored genius catalyze a wave of systemic change? There is so much at stake. Disasters come with a huge bang, the shock of their largesse forcing urgent questions that yield solutions more akin to bandaids than the beginnings of wise structural reforms. Can a community-based organization of Living Hope’s tenderness penetrate the global fight around how to protect against climate change? Is it possible for staccato and legato to play in the same measure without shoving the necessary role of the other out?
We may have no choice but to test them and find out. As the world weathers another variant of Covid-19 and we all slowly realize the long if dramatic nature of our civilizational remaking, one key at the core of all that is being revealed is that those creating the terms of our shared future must be those most severely affected by all that is wrong in the present. Living Hope is well-poised to lead the way.