Interview: Living Hope Wheelchair Association
We spoke with leaders of the Living Hope Wheelchair Association, based in Harris County (which includes Houston), Texas, which is a member of our affiliate Health Care for All Texas. Raymundo Mendoza (board secretary and Living Hope member), Francisco Cedillo (board treasurer and Living Hope member), and Francisco Arguelles (Executive Director of Living Hope Wheelchair Association) answered our questions. You can learn more about Living hope at www.lhwassociation.org or by calling 281-764-6251.
1. Why was the Living Hope Wheelchair Association formed, and can you tell us a bit about the situation faced by its members?
Living Hope is an organization formed by immigrants with spinal cord injuries working to improve our quality of life through services, advocacy, and community organizing. We formed in 2005 when the Harris County Hospital District decided to stop providing basic medical supplies to immigrants who were not eligible for Medicaid. We had to organize to find ways to help one another raise funds to buy catheters, diapers, and other supplies, and after some years evolved to become a small non–profit organization operated by us with the help of some volunteers.
Suffering a catastrophic spinal cord injury has a brutal impact on a person’s life. If this person is an immigrant or a low-wage worker in the United States then he or she is in an extremely vulnerable situation. During our existence as an organization we have been able to help each other first to survive the depression that comes after the accident, then to survive the problems that come with not having resources to buy medical supplies and equipment. We have learned to improve our quality of life through hope and solidarity, sharing what we have and organizing to get what we need.
2. What does the experience of Living Hope members tell us about the healthcare system in the United States?
Our experience with the healthcare system in the United States is a mixed one. We are grateful to doctors and nurses in the emergency services that took care of us after we were victims of a crime or suffered car or workplace accidents. We are grateful to therapists and rehabilitation specialists that have helped us along the years. On the other hand it is very frustrating not having access to regular healthcare. It is very painful to see our members needing attention and having to wait until they are in very bad shape because they can only be treated as emergencies. We have a member that needed dialysis treatment three times a week due to the kidney damage he suffered when he was shot in a drive-by shooting and he could only receive treatment every week or every ten days when his potassium reached critical levels; even though we were able to get him more regular treatment in a clinic, the damage to his health was devastating.
More recently one of our members, who is also our board treasurer, had to wait fourteen hours seated in his wheelchair in the waiting room at the county hospital before a doctor saw him. They didn’t even give him a bed during those fourteen hours so he could lie down and avoid developing a bedsore ulcer that can be very dangerous because they take months to heal. We know this is not the fault of doctors and nurses but a consequence of terrible public health policies that exclude so many people from having access to health care.
We believe that the fact that we are not included is a great injustice because we have contributed to the economy of this country and this is very frustrating. We want equality for all, health is a human right, and we don’t go to the emergency room because we enjoy it!
The situation in Texas is particularly bad, we are the state with more uninsured people and recently Governor Perry refused to take advantage of available resources to expand Medicaid, ignoring the negative impact this has on the whole system; we believe it is outrageous that he and other politicians don’t see that while they count the votes they win with these decisions, we have to count the hours we spend waiting in the emergency room, the hours we spend in severe pain because we don’t have access to treatment and medicine, and we count those who die and could have lived if their right to health care would be respected before the profits of insurance companies or the electoral interests of politicians that have never suffered like regular people.
3. Advocates for a single-payer healthcare system will often hear the question: “Will this cover undocumented immigrants?” How does Living Hope make the case that access to health services and goods should be available to all, regardless of documentation status? What can advocates for truly universal health care learn from Living Hope’s experience speaking with the broader community in Texas?
For us this is very simple: We are human beings, we have human rights, just like the rest of people in the U.S. Including undocumented immigrants in the healthcare system makes sense from a public health point of view and also from an economic point of view, it has been demonstrated by many different well respected studies; but that shouldn’t be the main reason why we are included: human dignity should be.
Texas is the state with more uninsured people and so many groups defending human rights in our state are working for a Medicaid expansion so we can have a better healthcare system. Ours is a very religious state and we think that those who want to deny our rights and humanity need to ask themselves: If we are not their brothers and sisters, how can they say that God is their Father?
So to advocates all over the country we have one advice: do not try to convince your opponents only with cost-benefit analysis, or seductive talking points; it is better to share stories that show the humanity, suffering and dignity of our communities and then let our opponents and the undecided do their homework with their consciences and beliefs, most people will do the right thing when they can connect with their own humanity and not just with ideological noise.
4. If a national, single-payer system was implemented that included all residents, how would that affect the lives of Living Hope members?
Having access to a single-payer system would have a great positive impact in our lives, it would mean opening the possibility of regular health care services that would help us prevent problems instead of having to live in a constant state of emergency. We are clear that a single-payer system would not solve all of our problems, we will still be in our wheelchairs, we will still have to face the discrimination we encounter both as immigrants and as persons with a disability, but what people who have health insurance and good health need to understand is that for us this is not an issue, this is a battle of life and death, and having access to health care will reduce the amount of pain we have to live with every day, it will help us live longer. So, paraphrasing our friend Ken Kenegos from the Health Care for All coalition here in Houston: those who prevent us from entering hospitals are today’s version of Alabama Governor George Wallace standing in the door of the University of Alabama in 1962. We know we are human beings and have rights and dignity; the question is if many of our current politicians in Texas are ready to acknowledge this and be on the right side of history.