Keeping a Visionary Alive
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“I want to end poverty in America. I don’t know if I can do it in my lifetime, but I hope to make a start on it. I want to advise on the creation of policies that will make things better for poor people. America is a horrible country to be poor in. It’s an even worse country to be sick in. That doesn’t have to be the case.”
Before kidney failure, Margarita refers to herself as “just a regular person”. She had plans for the future and for the lives of her children. She was a scholar at the University of Southern California, in the American Studies and Ethnicity Department, working on welfare reform and its aftermath as someone who has been reliant on the broken system. Margarita was interested in how low-income families were able to manage (if indeed they were able to manage) in the absence of an economic safety net, looking at the growth of non-profits in Los Angeles County and was working on an investigation of how these service providers filled in the gaps left by government divestiture. Her focus was mainly community organizations who primarily provided services to single mothers and their children. Margarita had a vision, and a mission.
She says, ““I believe that one of the biggest problems of the current system is that poor people are discouraged from sharing resources and information. There are penalties for sharing food stamps and so much of the system encourages the poor to be mistrustful of each other. Consequently, when low income people are aware of useful resources they are less likely to share this information with other low income people. I believe that if people could are encouraged to share resources that they can help each other and improve the conditions of their lives together. I believe that if we changed the way that we offered aid to low income families-- if we helped people to build community and share resources-- that it would lighten the burden of poverty and help people to improve their lives.”
She wanted to teach and provide college educations for her children. She had a plan to escape poverty and secure a happy future for her kids. She felt like she could get past any obstacle and success felt like something that was attainable. All of that has been derailed by kidney disease.
Although she showed symptoms of kidney disease and carried several risk factors, she was never screened for it because she was on Medicaid; there are certain standards of care in this country for people who can afford quality healthcare and people who cannot. In many ways what has happened to Margarita is demonstrative of a lot of the problems with healthcare in this country. America spends more money on healthcare than per capita than any industrialized nation, yet we have some of the worst outcomes. The government’s refusal to pay for inexpensive and routine preventative care costs us all more in the long-term and the treatment of chronic and serious illness becomes everyone’s problem. The bill for Margarita’s dialysis is $2000+ a day, which doesn’t even include the many expensive meds that keep her alive. Her condition wasn’t diagnosed until it had become out of control, mostly due to the fact that she couldn’t afford to see the doctor for seemingly minor ailments. Because the minor ailments were ignored they became a huge chronic illness that is very expensive, AND because of her illness she is too sick to work so she is dependent on public assistance.
Currently Margarita receives SSI, food stamps, Medicare and Medicaid; the entire process and bureaucracy is demoralizing. Though the government agrees that she is not well enough to work, they do not provide adequate funds for her to live on. She negotiates with government agencies to get medications my doctor deems necessary simply because medicare doesn’t consider the expense justified; right now she has not had a med that her doctor prescribed because Medicare won’t pay for it and she can’t afford to pay for it out of pocket.
Most days Margarita can barely muster the energy to get out of bed. Most of her time is occupied by doctor’s appointments, medications and dialysis. She experiences constant pain and fatigue, which makes it hard for her to focus on even the simplest tasks. She doesn’t feel like she has autonomy over her physical being because "compliance" is so important in getting listed and every time she disagrees with a treatment plan she is threatened with being labeled "noncompliant." Being in many doctors appointments per week, Margarita gets touched and examined routinely, sometimes in such a rote way that people forget or dismiss her very humanity, that they are dealing with a person with hopes, who has survived trauma, who has dreams, just like any one of us.
Margarita tells us, “I want a world where everyone has enough of what they need, and where everyone has a community in which they feel loved and protected.”
Please help us raise $20,000 for Margarita to live on until she can get a kidney transplant. We believe in the collective good will, and that building community literally saves lives. Please contribute what you can to keep one of our visionaries alive.
Before kidney failure, Margarita refers to herself as “just a regular person”. She had plans for the future and for the lives of her children. She was a scholar at the University of Southern California, in the American Studies and Ethnicity Department, working on welfare reform and its aftermath as someone who has been reliant on the broken system. Margarita was interested in how low-income families were able to manage (if indeed they were able to manage) in the absence of an economic safety net, looking at the growth of non-profits in Los Angeles County and was working on an investigation of how these service providers filled in the gaps left by government divestiture. Her focus was mainly community organizations who primarily provided services to single mothers and their children. Margarita had a vision, and a mission.
She says, ““I believe that one of the biggest problems of the current system is that poor people are discouraged from sharing resources and information. There are penalties for sharing food stamps and so much of the system encourages the poor to be mistrustful of each other. Consequently, when low income people are aware of useful resources they are less likely to share this information with other low income people. I believe that if people could are encouraged to share resources that they can help each other and improve the conditions of their lives together. I believe that if we changed the way that we offered aid to low income families-- if we helped people to build community and share resources-- that it would lighten the burden of poverty and help people to improve their lives.”
She wanted to teach and provide college educations for her children. She had a plan to escape poverty and secure a happy future for her kids. She felt like she could get past any obstacle and success felt like something that was attainable. All of that has been derailed by kidney disease.
Although she showed symptoms of kidney disease and carried several risk factors, she was never screened for it because she was on Medicaid; there are certain standards of care in this country for people who can afford quality healthcare and people who cannot. In many ways what has happened to Margarita is demonstrative of a lot of the problems with healthcare in this country. America spends more money on healthcare than per capita than any industrialized nation, yet we have some of the worst outcomes. The government’s refusal to pay for inexpensive and routine preventative care costs us all more in the long-term and the treatment of chronic and serious illness becomes everyone’s problem. The bill for Margarita’s dialysis is $2000+ a day, which doesn’t even include the many expensive meds that keep her alive. Her condition wasn’t diagnosed until it had become out of control, mostly due to the fact that she couldn’t afford to see the doctor for seemingly minor ailments. Because the minor ailments were ignored they became a huge chronic illness that is very expensive, AND because of her illness she is too sick to work so she is dependent on public assistance.
Currently Margarita receives SSI, food stamps, Medicare and Medicaid; the entire process and bureaucracy is demoralizing. Though the government agrees that she is not well enough to work, they do not provide adequate funds for her to live on. She negotiates with government agencies to get medications my doctor deems necessary simply because medicare doesn’t consider the expense justified; right now she has not had a med that her doctor prescribed because Medicare won’t pay for it and she can’t afford to pay for it out of pocket.
Most days Margarita can barely muster the energy to get out of bed. Most of her time is occupied by doctor’s appointments, medications and dialysis. She experiences constant pain and fatigue, which makes it hard for her to focus on even the simplest tasks. She doesn’t feel like she has autonomy over her physical being because "compliance" is so important in getting listed and every time she disagrees with a treatment plan she is threatened with being labeled "noncompliant." Being in many doctors appointments per week, Margarita gets touched and examined routinely, sometimes in such a rote way that people forget or dismiss her very humanity, that they are dealing with a person with hopes, who has survived trauma, who has dreams, just like any one of us.
Margarita tells us, “I want a world where everyone has enough of what they need, and where everyone has a community in which they feel loved and protected.”
Please help us raise $20,000 for Margarita to live on until she can get a kidney transplant. We believe in the collective good will, and that building community literally saves lives. Please contribute what you can to keep one of our visionaries alive.
Organizer and beneficiary
Jacoby Ballard
Organizer
Geneva, NY
Margarita Smith
Beneficiary
