An interview with Sarah Lau of Manchester, MD
Sarah Lau isn’t your typical 30-year-old-mom. Diagnosed with a range of health issues in her teens, including generalized anxiety disorder, IBD, endometriosis and OCD, Sarah has spent much of her life in doctor’s offices and emergency rooms. Because of this, Sarah says, she, her husband and their two kids live “in forced poverty in order to have Medicaid”. Both of Sarah’s pregnancies were described by her doctors as miracles, and both took a heavy toll on her body. Now diagnosed with Ehlers-Danlos Syndrome (EDS), Sarah is on a 3-year waitlist to find out how dangerous her condition is.
The National Institute of Health defines EDS as “a group of disorders that affect the connective tissues that support the skin, bones, blood vessels, and many other organs and tissues”. The three-year wait period is especially precarious, as the symptoms of EDS “vary from mildly loose joints to life-threatening complications”. While there are many hospitals she could go to, the one with the longest wait period is the only institution that accepts Medicaid.
Meanwhile, the AHCA, which would cut the Medicaid budget by 25% over 10 years, endangers the lives of millions of Americans who, like Sarah, rely on Medicaid in order to survive. For the bill's proponents, the care that people receive through Medicaid is a luxury that can be retracted in times of austerity. But navigating Medicaid as it is now is a full-time job for people like Sarah, and her quality of life is already severely restricted.
We sat down with Sarah to talk about the difficulties of being a Medicaid patient, the consequences of the increased stigma and regulation of opiates for her as a poor, disabled person, and the ways in which National Improved Medicare for All would benefit her family.
Brittany: Tell me more about Ehlers-Danlos Syndrome (EDS).
Sarah: I’m in a wait to get typed. There are six different types of EDS and I fit the clinical criteria for 3 different types. One of them is bad, potentially fatal, so I have to get tested soon. It’s the vascular type, where veins and arteries can spontaneously rupture, as well as organs. My grandmother had her first aneurysm at 38. I’m 30 now.
The only hospital that accepts my form of Medicaid is GBMC. And the top doctor in the world for EDS is at GBMC hospital. Here’s the thing: it’s a 3-year wait. You apply for an appointment and they call you in a year to schedule your appointment. It’s a 30-page application. I have a friend who applied in September of 15, got the call in December of 16, and then her appointment is in 2018.
University of Maryland could fit me in a month, but my insurance isn’t accepted there. At Hershey, I found out that they could fit me in and they do accept my insurance but it might not go through because there is another hospital in Maryland that offers the same treatment. Right now, I’m working on finding out if it will go through.
What’s your biggest pet peeve right now?
Pain medication [opioids]. I hate it so much. But my grandmother hates her insulin for her diabetes, but she still does because it keeps her alive. I’m on a teeny tiny dose to just keep me going. My rheumatologist informed me yesterday that this was the last script he was going to do, so now I have to go to a pain clinic. It’s difficult for me to get to a pain clinic.
Hogan declared a state of emergency for the opioid epidemic and I think that’s what made the doctor not able to give me my prescription. I think it’s interesting that they’re putting all this money into fighting the epidemic instead of funding research to alternative pain medications.
Since talking to you, I’ve had three fractures. Yesterday, when I got that phone call, I broke down. The first thought that was through my head was, “this is how I die”. It’s such a huge topic for me because if I didn’t have to take pain medication, I would be so much happier, because I hate it. I don’t like the sluggishness and I don’t like the addictiveness of it.
Between trying to figure out the care you need, going to all the doctors you need to see, arguing over your prescriptions and everything, and figuring out what you’re going to be covered for, it sounds like a full-time job.
It is. I really don’t have time for a lot else. I am dealing with some sort of health issue on every day. I have lists of things that I know I should do but that I don’t feel like taking care of at the moment, like my GYN believes that I have pelvic floor prolapse happening. And gave me the referral for the urologist, but I have not made the appointment, mostly because I have so much going on already that I’m dealing with, that I can’t even deal with another medical thing at this point.
We finally this year are seeing a word attached to the unspoken expectation that everyone just needs to buckle up their bootstraps and get on. They’re calling it “grit”, American grit. How do you find that this expectation affects you in accessing the care you need? Do you feel like there are a lot of assumptions that are made?
Especially because of me being on Medicaid. I have found also that it depends how I look. When I go into a doctor’s office, if I dress like I am now in sweats, I am treated differently than if I go in there and do my hair. Sometimes I’ll put on makeup and perfume or something. Just so I get better results from my doctors. It’s awful that I have to do that, but if you don’t look right and you have Medicaid, it’s all “you’re just a druggie, you’re just some loser that doesn’t want to work and is lazy”.
It’s a horrible, horrible thing that I’ve been stuck with. I had no choice. And there’s nothing I can do about it. It’s just my life. It’s very frustrating to know that I am treated differently because of it. I went to my orthopedist for my first SI problem. At this point, I had already been diagnosed with it. And he came into the room with his hands clasped and he leaned forward and he goes [in a baby voice] “Hi honey, so why do you think you have SI problems?” And I went “well, because of the diagnostic criteria that I’ve been having and the fact that my GYN and both my physical therapists have said that it’s been rotated, that it’s posterially rotated and winged out”. And he just looked like “whoa, whoa” and the whole entire dynamic of the conversation changed. But his initial reaction was “talk to her like an infant”. And it’s kind of sickening, that it was his gut, go-to reaction, what he saw on my chart.
Do you think that this new awareness of opioid addiction as a problem has contributed to this?
Oh yeah, definitely. Like I said, I understand that it is most definitely a problem and that there are people who are taking it that shouldn’t be taking it. But the patients that need it are getting punished. It’s so sad, there was a case in Virginia a few months ago. A man killed his wife. He shot her because she lost her pain medication and he couldn’t take to see her suffering any more. And he actually turned himself in. He said, “I just couldn’t do it any more. I couldn’t see her like that any more. She was dying in front of my eyes and I had to make it stop”. And they looked back on the case and it was a pretty desperate situation. The way he put it was, “you wouldn’t let a dog live in the amount of pain that they were letting her live in” and [her doctors were] just saying “well, there’s an opioid crisis, so sorry” and that was their only response. People are getting swept under the rug, basically.
Do you feel like your gender or being diagnosed with so many illnesses and other factors like that, do you think it all has an effect on the perception of the levels of pain that doctors feel you can endure?
Yeah, definitely. I get confused because they know that I’m in pain, but they feel like I should just deal with it. Especially with my gender. With the endometriosis. I had always complained that my cycles were incredibly painful and it didn’t feel right, and doctors would just [respond that] “Oh, it hurts”. And then we found out that I had this endometriosis thing going on.
So when I go in with issues, first they say, “well, it could be in your head’. Then, they start looking at the actual medical documentation. With my weight loss going on right now, my GI’s first response was “Have you seen a psychiatrist?” And he basically diagnosed me with conversion disorder, which is the new name for hysteria. And then it turns out that I had this jaw problem going on.
I’ve run the gamut of doctors. I also have doctors that are fabulous. My neurologist is actually fabulous. She actually cares, she takes time to ask questions to me. She sees a lot of weird things happen. I feel most doctors don’t want to take me on.
Do you think they might be worried about malpractice?
That’s exactly what I think. That they think, “well, that’s a special case right there, I don’t want to touch it with a ten-foot pole”. The GYN will say, “Oh, it’s your IBD”. And so I’ll go to the GI, and they’ll be like, “Oh no, it’s this”. And so they keep sending me to my different specialists. Because they don’t want to take care of the problem. That’s what it feels like.
The HR-676 bill (National Improved Medicare for All) would classify healthcare as a human right. If it was codified into law as a human right, do you think that it would affect the treatment that you get?
I do. I really do. Because everybody, all the doctors are so scared to write prescriptions. Because they are scared of the DEA coming in on them or FDA regulations coming in and saying “you’re doing this wrong”, or that they’ll get fined. Or they’ll lose their license. It’s noticing the trend of how scared doctors are getting to write these prescriptions. Like, my rheumatologist, before he wrote the first prescription, was, he laid out, “I’m only going to do this amount, this is all I feel comfortable with”, and he laid rules down to be able to have them. And I think that if patients were treated like patients, it would be better, instead of treated like a number, kind of, that’s just to be taken care of and pushed out the door.
Hundreds of years ago, you had to pay for fire insurance. And they gave you a big metal plaque that you put above your door. And there if there was a fire in the house, the fire department would come and they would say, “OK, you’ve got a plaque, we’ll put out the fire”. And if you didn’t have a plaque, they kept driving. They didn’t stop. But now, if somebody calls the fire department, they don’t get a bill. I feel the same way with health insurance. It’s seen as a luxury when it doesn’t have to be.
Tell me about the ideal health system. What sort of features do you think would make your life a lot easier?
My husband has only been allowed to make a certain amount so that we can qualify for Medicaid. I have to live here [with my parents] and I can’t apply for disability because if it would take us over the cap on income and we would lose Medicaid. We’re basically in forced poverty in order to have Medicaid.
Honestly, if we didn’t have to worry about our income level to be able to have health insurance, that would be a game changer on so many levels. I could do some sort of work from home option. I could potentially get a job. Or just apply for disability and be able to have that extra income. That would change our lives.
Do you think it would also change your children’s lives?
Oh, most definitely. They have had to deal with entertaining themselves because I’m on the phone with the insurance company so many times. I am on hold a lot. They’ve just learned, “Mommy has to go on the phone a lot”. Right now, I’m still fighting something that happened two years ago. It was a technical error with our insurance and we lost Medicaid for a week. And it was $1900 for two physical therapy visits. It’s little things like that. It takes time away from my children and it makes me more stressed out, which stresses them out, because they don’t understand, they really don’t understand what’s so frustrating about it all. My daughter knows a lot about insurance. She’s eight years old.
One of the reasons why I was really excited to interview you is that your experience challenges the way that illness and disability are presented in society, especially all this “disability porn” and inspiration stories.
[groaning] Oh my god, yes.
And not just that, but also the social trend telling us we should all love our bodies. I have friends who don’t love their bodies and don’t like being told that because they are in a lifelong struggle with their bodies. Do you think that there is a systemic gap in understanding the challenges that you are going through? And also, do you think that all these different distractions, like doctors who are worried about malpractice, doctors who are maybe judging you because of the opioids… do you think that all these things are preventing doctors from educating themselves and from being able to try out better types of care?
Oh, most definitely. They’re so scared about the government stepping in and potentially harming them in some way professionally. It’s almost like a real, palpable fear of branching out, because they don’t know if it’s even going to be covered by insurance. Because there’s a lot of experimental treatments that they’re like, “Oh, well, I can’t do that because it’s not exactly covered”. And there are people that are getting denied procedures because the doctors aren’t sure if the insurance is going to come through and pay it.
There’s a lot more information about EDS going on right now. And that’s been a campaign by the EDS society. Doctors are learning a bit more, but when I first talked to my primary care doctor about it, she said, “Well, I’ve heard about that, hold on”, and she went and got a textbook and read an eight-sentence paragraph about it. And she was like, “Well, this isn’t a big deal. You just bend more. There are a lot of gymnasts and acrobats and stuff that do this. It’s not a big deal or anything”. That was her response.
And I was just, “Oh, OK, so it’s not a big deal. I am just faking this. I’m just, I’m a wuss”. That is basically what I feel like I am being told: “You’re just a wuss. You need to buck up and deal with this. There are people that have so much worse. Why are you acting this way”?
It’s very upsetting. My quality of life is pretty bad right now. I feel like there’s a supernova going off inside my body. And everything’s falling apart. And I’m scared. I’m scared I’m not going to make it to my 31st birthday. And I’m getting the feeling from not only health professionals, but also regular people, that “others have it worse, so why are you complaining”, kind of thing. Yeah, there are people who have it worse, but my situation could be better. And there are ways to go about that.
Basically, I have been doing my best to tell everybody about HR-676 because I believe that our nation would change drastically for the good. We would have not only people surviving, but also in better health and more productive in society. If you’re more productive, you can take time to educate yourself, get a further education, which helps your children, which helps society in general. I really think that could be a turning point for our country, if healthcare was available to everybody.
This past Friday, March 31, HCHR-MD attended a town hall meeting with Representative Andy Harris, at Chesapeake College in Wye Mills, MD. As a person born and raised in Talbot County, a place not frequently associated with political protests, I was thunderstruck at the level of organizing and resistance that is taking place on the Eastern Shore. Chatting with an activist from Talbot Rising, I was told that the group already has over 900 members. After attending town halls across the state, it is clear that suburban and rural areas, even those that have been politically dormant for several decades, are mobilizing in numbers that have been unseen for generations.
Jan Plotczyk, of Rock Hall, Md., is one of many in line for Rep. Andy Harris' town hall in Wye Mills tonight. pic.twitter.com/HHDeqz3Aeg— Brian Witte (@APBrianWitte) March 31, 2017
The town hall at Chesapeake College was the first by Representative Harris since the election in November, and it was scheduled for one hour only. Warnings had been distributed through the media that disruptive behavior would not be tolerated. Signs over a certain size would not be allowed. Petitioning by advocacy groups would be forbidden. But once we arrived, we saw that it would be impossible to enforce these rules. As we entered the building, we were given red and green pieces of paper to raise in the air in response to the Congressman's comments. Whereas the audiences for Democrat town halls I've attended have been civil and compliant, on this occasion, it was a pantomime, more reminiscent of angry sports fans than the sleepy communities that raised me.
Pretty sure this is not Andy Harris's crowd. pic.twitter.com/d4L3rcDqkZ— John Fritze (@jfritze) March 31, 2017
The evening was opened with a prayer by a local faith leader, who appealed to God to pacify the crowd. His prayers were not answered.
With only an hour to go, the crowd was eager to have their questions answered. When Representative Harris announced that he would start off the town hall with a series of slides to introduce his positions, the mood went from sour to openly hostile. And his paternalistic explanations towards the crowd did little to help.
"How much do you pay?" "What's your deductible?" Lights briefly turned off to jeers and then turn back on.— HealthisHumanRightMD (@HumanRightMD) March 31, 2017
At one point, Representative Harris demanded that a man sit back down in his seat or he would be escorted from the building. In response, a third of the crowd stood up. And, in an act of solidarity, when Harris asked if people on the Eastern Shore were happy with their taxes going to "underperforming Baltimore City schools", the crowd responded with a thundering "YES!", along with the biggest display of green cards of the night.
I returned to the outside of the building to speak with some of the people who had been locked out from attending. After the town hall ended, Talbot Rising hosted a rally outside of the auditorium entrance. Again, the level of animosity was unlike anything I'd expected to see on the Eastern Shore in my lifetime. Harris would later claim that the room at been filled with busloads of outsiders, but the majority of people I encountered were from Talbot County.
Among the crowd that gathered outside the auditorium, I ran into one of my cousins, as well as old family friends who informed me that an aunt of mine had advocated for single payer decades ago. As with many rural areas, the memory of the past is very strong on the Eastern Shore. And what has surprised me in recent years, especially since the election of Barack Obama, is a growing public consciousness among residents of Talbot, Dorchester and Wicomico counties (to name but a few) that our local history is defined by generations of Black struggle, and that the cultural identity of our bioregion is not set in stone. More and more, we see a revival of buried histories - previously passed down orally from generation to generation - that celebrates solidarity across race, class and gender barriers. And while social movements on the Eastern Shore have a long way to go in the service of justice for everyone, there is hope in groups like Talbot Rising.
Friday's town hall showed us that another Eastern Shore is possible, one based on the principle that we all should take care of each other. What had been only a stream of consciousness prior to the 2016 election has now risen into a river of resistance. And I'm excited to find out where it will take us.
WOMEN WHO STRIKE
Does it look like there’s a huge crowd of us? You’re seeing just a fraction of our size. There are thousands more. –Lysistrata
In the 5th century BC, the Greek playwright Aristophanes wrote a bawdy comedy in which the women of Greece withhold sex from their husbands in order to secure the end of the Peloponnesian war. If the collective action led by Lysistrata had been real as opposed to fictitious, it would probably be known today as the oldest labor strike in the history of the world.
Lysistrata remains one of the most beloved of all surviving comedies from Ancient Greece, and for myself and many other women who have enjoyed it through the years, its central argument, that the provision of sex and intimacy is a type of labor that can be collectively withheld in order to improve the material circumstances of women and their families, invites us to unpack and analyze the many types of invisible and uncompensated labor that women in the 21st century are expected to perform.
Today, March 8, 2017, we may see one of the largest women’s strikes in history. In addition to paid work, the Women Strike website invites women to strike from “emotional labor, childcare, diapers, housework, cooking, sweeping, laundry, dishes, errands, groceries, fake smiles, flirting, makeup”. But not everyone is able to strike in that way. Single mothers and others may not be in a position to withhold this labor.
Our response today should also include listening to the voices of mothers, especially marginalized mothers, and requires us not to abandon such work, but to organize to redistribute it collectively and to secure compensation for the people who perform it, who already face intersecting oppressions such as race, class, and disability. Single mothers are marginalized, economically and culturally, while married and partnered mothers can face the choice between leaving abusive relationships and keeping food on the table.
HEALTHCARE IS A WOMEN’S RIGHTS ISSUE
Corporate feminism tells us that aspiration and success is within everyone’s reach if they endeavor to try hard enough, a message which has the unuttered flipside that failure is also down to the individual not wanting it enough… Super Mums are invariably wealthier than the readers of weekend supplements, and when asked about how they manage, they never respond: “I hired a number of women to work for low wages, cleaning and running my household, carrying out life admin, organizing my diary, and raising my children.” - Dawn Foster, Lean Out
Why is the provision of healthcare a feminist issue? For a start, women are over-represented in low-wage and part-time work, meaning that they are less likely to have access to health insurance through their employer than men. According to economist Laura D’Andrea Tyson, women make up "75% of workers in the lowest-paid occupations and about 60% of minimum wage workers". Tyson adds that "most women earning the minimum wage are not teenagers, or wives who can rely on a spouse's income." Of the women who work in low-wage jobs, half are women of color. And with 24% of women in the United States relying on their partner for health insurance as a dependent, it would be reasonable to estimate that there are at least thousands of women, especially mothers to small children with medical conditions, who endure abusive relationships in order to keep themselves and their children insured.
In addition to being disadvantaged when it comes to access to affordable healthcare, women are already providing critical care to children, parents and other family members for free. The valuing of this invisible labor by both governments and society has long been a primary goal for radical elements of the feminist movement.
Recently, unpacking the ways in which emotional and caring labor continue to hold women back has once again become a primary subject in feminist discourses. Early last year, I became aware of what is now known as the Emotional Labor Metafilter Thread, a 49-page compilation of stories on this topic, mostly from anonymous women. The document had a strong impact on many of my friends and even the most committed activists among us noted how often we had seen this type of gendered exploitation reproduced in our social movements.
At the same time, our trans sisters and queer friends noted how they were often expected to attend to the emotional needs of cisgendered men and women. Black women activists point out a similar dynamic between themselves and white activists, especially white women. It is clear that the experience of emotional labor and caring labor is not a universal one, and in order to redistribute that labor, we must also address the race and class barriers that exist in society today.
INTERVIEW: CHINA MARTENS, REAL SUPER-MUM AND AUTHOR OF THE FUTURE GENERATION
In a previous post, I wrote that “In order to see a transformational change to a caring society, as activists, we must first transform our relationships with one another”. Since the 1990s, China Martens has been one of the most influential and prolific writers when it comes to imagining and documenting this transformation. As a young, poor, and single mother, she responded to a lack of support structures for mothers and parents in the punk scene by creating a radical parenting zine, called The Future Generation. China is currently raising funds in order to print the second edition of her anthology of sixteen years of The Future Generation.
BRITTANY: TELL ME ABOUT THE FUTURE GENERATION.
China: I started The Future Generation in 1990, when I was a 23-year-old anarchist-punk single mother and my daughter was two years old. The first issue included topics of home birth, city planning, and excerpts from books like Recreating Motherhood: Ideology and Technology in a Patriarchal Society by Barbara Katz Rothman. Its cover included a quote by Emma Goldman: “We, who pay dearly for every breath of pure, fresh air, must guard against the tendency to fetter the future”.
I wanted to connect with other parents, outside the mainstream, like myself, and not so like myself, as well as those who had no children of their own but were interested in things like social parenting, as these issues do concern us all.
I continued the zine into my daughter’s teenage years, changing all the while, writing about whatever concerned me. In 2007, Atomic Books approached me to compile a book out of the back issues. Now – ten years later – I’m raising money to help support the ten-year anniversary second edition to come out again. My daughter, who is 29 now, is going to write a new afterword for it.
I started out in self-publishing feeling I was a radical, but ended up feeling just like the average poor person, without enough options and too much stress. But I think all of it is valid, my parenting trajectory, and my personal writing, which many different people have told me inspired and empowered them in their own paths.
WHY IS IT THAT CHILDREARING AND ELDERCARE ARE USUALLY UNCOMPENSATED OR UNDER-COMPENSATED, ESPECIALLY AT A MOMENT WHEN HEALTHCARE COSTS ARE AT AN ALL-TIME HIGH?
Labor is exploited when a person is not fairly compensated. When they have no control over their work, when productivity is placed over humanity and their different needs, and when they are used up until they are thrown away. We are taught to think of others, or of ourselves, as lesser beings if our work is being exploited or if our lives are not given the same rights as people from more privileged groups. This subjugation trickles down to the expanse of our personal lives.
We live in a country built on the bloodshed and ongoing oppression of its indigenous people, on the enslavement of African peoples and on the profiteering off of war, exploitative labor practices, and other misery. It is no surprise that the work of caring for others, what we call in Revolutionary Mothering the work of mothering (beyond gender or biology), the work of nurturing, of creating, of providing for the survival of the species, is a “priceless” invisible labor.
In this society, it’s seen as weak if you need the support of other people. Caregiving is not valued. It is expected and belittled. Many people think you shouldn’t have children if you can’t afford them. The invisible (and often gendered) labor that we have to perform in order for ourselves and others to bloom and flourish, is insulted as not important because it is not paid. The worker, as a child or elder, is no longer pertinent except as a consumer or a statistic to create profit from social workers, researchers, etc.
If people were full, whole, healthy, happy, unified, they would be unexploitable. You can’t sell a happy person a lie. You have to break their culture, and their self-esteem, to profit from them. At this point, we are all cogs in the machine – being exploited or exploiting at different levels. Capitalism is a cancer built on lack: on unfulfilled, purposely manufactured, unceasing hunger.
Raising life, giving life and taking care of life in all phases of life, without exploitation, with liberation for the young and those who raise and care for them, requires a more just society.
ONE OF THE DEMANDS OF WOMEN STRIKE, WHICH IS CALLING FOR AN INTERNATIONAL DAY OF STRIKE ACTION ON MAY 8, IS NATIONAL HEALTHCARE FOR ALL. WHY IS THE PROVISION OF HEALTHCARE FOR EVERYONE AS A HUMAN RIGHT ESSENTIAL TO THE LIBERATION OF MOTHERS AND CAREGIVERS?
Mothers and other caregivers often have a double, triple or quadruple job. We need to look at intersectional mothering, which is not just intersectional feminism, but also making connections between how these different identities and issues create differences in the conditions of mothering. At the root of health care is the right for every human being to have physical and mental health. Much of health begins before, during, and after birth as well as through childhood into young adulthood. Mothers are often the first teachers, nurses, researchers, culture transmitters, cooks, resource procurers, transportation, emotional and spiritual advisors, community builders, etc. and are on the front line of care work. Infancy and early childhood are very important times. As long as mothers do not have access to health care for themselves or children, we cannot live in a just or fair society.
Not every woman will be able to strike today, or participate in any action in the same way, and there should always be alternative ways to participate and express oneself as well as movements that are inclusive of all issues, including mothering. March 8 is a good day to be mindful of mothers, especially marginalized mothers, and others who cannot go on strike today. Single moms and others who don't have the same ability to strike and how we need to show up for them more every day, center marginalized mothers’ voices in our movement.
As much as intersectional feminism has caught on as a keyword, we still are not examining what intersectional mothering means. For example, the stress of racism has impacted black mothers to have more than three times the rate of infant mortality than white mothers. Immigrant mothers are threatened more than ever with being separated from their children, and with having their children incarcerated. For many, including trans mothers, their reproductive rights are in danger. Not all women have equal rights when it comes to mothering.
WHAT CAN THE MOVEMENT FOR HEALTHCARE JUSTICE DO TO HELP REDUCE THE RISKS THAT NEW MOTHERS FACE?
Support, not judge! Especially when it comes to poor mothers, young mothers, mothers of color, queer, lesbian, and trans mothers, immigrant mothers, disabled mothers, and other marginalized groups. While marginalized mothers are some of the most impacted members of society by oppressions within society, they are also the people with the most answers to how to create a better world.
Historically, services for low-income mothers and mothers of color have been used to control their reproductive options against their knowledge or will instead of being used to empower and uplift them. We must trust a woman’s right to make choices for her own body, and we must support these choices. Poor women, young, immigrant, mothers of color, lesbian, queer, and trans mothers, mothers with disabilities, as well as other groups have often been demonized for the oppressions they face instead of aided in the liberations they sought to raise up, for themselves and their children. Listen to mothers, listen to those impacted, especially to marginalized mothers’ voices – and you will make a better world for everyone. Trust they are the experts on their own lives and aid and abet them in the resources that they need to improve the world.
Too much money is made off exploiting those in poverty, criminalization, and punishment; also in research, medicine, and social work. The power has to be in the hands of those who are most impacted to change their lives.
Trust mothers and support them so they can trust their children and themselves. There is no replacement for the power of mothering, or those who do the work, who give care, who are there in day-to-day life. We need a network of care-supporting caregivers. Every mother, no matter where she is and how society validates her, is very important to the health of present and future generations.
At the corner of Park Avenue and Read Street in the Mount Vernon neighborhood of Baltimore, you will find a boarded up window that has been painted over and tagged with two quotes. The first one, “Be the change you wish to see”, is marked in red and will be recognized by many as Mahatma Gandhi’s words. And spelled out in between those lines, marked in black, is a saying from Muhammad Ali: “What you’re thinking is what you’re becoming”.
Baltimore is a city where people are not afraid to be radical, to dream the impossible, to make the impossible possible. I’m thrilled to be the new statewide organizer for the Healthcare Is a Human Right Campaign. My background as an activist has covered a number of issues, from pressuring the World Bank to develop a rights-based set of standards for its loans, to the student occupations and uprisings in the UK during the winter of 2010-11, to direct action campaigns to stop climate change.
There is a common thread that is interwoven with the issues I’ve organized around in the past and our current healthcare crisis. They all reflect the results of a failed political and economic project that academics and activists call neoliberalism. Since the 80s (and even before then), we have been taught by our political leaders to believe that the purpose of government is to facilitate business interests, and that, as the late Mark Fisher wrote in Capitalist Realism, “everything in society, including healthcare and education, should be run as a business”. For former Baltimorean David Harvey (whose essay “A view from Federal Hill” is essential reading), neoliberalism is an attempt by the rich to generate wealth for themselves by privatizing public goods. We are repeatedly told that “There Is No Alternative” (TINA) to the current economic order, yet Fisher explains that “what is currently called realistic” – that is, the dedication to market-based solutions that now characterizes public policy – “was itself once impossible” and that “the current political economic landscape… could scarcely have been imagined in 1975.” The Alter-Globalization movement, which materialized in the late 1990s, responded to TINA with the slogan “We are unstoppable! Another world is possible!”
In the UK, where I lived, worked and studied for eight years, the Alter-Globalization movement evolved into The Camp for Climate Action. Climate Camp changed my life forever when I entered their 2009 summer camp with a backpack and a pop-up tent, after seeing it advertised on a poster on my way to work. Organizers had surprised everyone, including the police, by erecting a tent city on Blackheath Common, formerly the gathering point for the Peasants’ Revolt of 1381, which nearly sacked London.
Climate Camp introduced me to prefigurative politics, which show a commitment to enact change by embodying the principles of the society you wish to see into your political organizing. If another world is possible, activism can and should show us what that world is going to look like. One example of this is the use of safer spaces policies, which originated as a solution to tackling oppression within activist circles. Another example is consensus-based decision making, which contrasts with the anti-democratic processes by which many controversial political decisions that negatively impact our communities are made.
Climate Camp’s model was to build action camps next to the sources of the UK’s largest carbon emissions, from power plants and airports to banking institutions that fund disastrous fossil fuel projects around the world. But the camps were also utopian spaces that showed us what a sustainable society can look like. At Blackheath, in the shadow of London’s financial hub at Canary Wharf, you could watch a film at the bicycle-powered and solar-powered cinemas, charge your phone from the windmill on site, have your medical needs attended to in the medic tent, eat delicious meals made from unwanted vegetables, drop your kids off in the kids space before heading to a workshop, borrow a tool from the tool library, and use the most luxurious compost toilets I’ve ever come across.
How to incorporate prefigurative politics into a healthcare campaign? There are many possibilities. We are at a moment that makes it easy to feel scared, isolated, and powerless. If it is indeed time to resist fascism, caring for one another must be part of that resistance. In order to see a transformational change to a caring society, as activists, we must first transform our relationships with one another. For us to “be the change”, as Gandhi says, we also must see the capacity for changein our friends, families, lovers, colleagues, neighbors, even in total strangers. The good news is that we are seeing an acceleration of mass movements at a scale that hasn’t happened for decades. From #BlackLivesMatter and the 2015 uprising, to the airport protests at BWI, to #ADayWithoutImmigrants, Baltimore is a tinderbox for radical dissent.
This month, the Healthcare Is A Human Right campaign hosted an event at a local bar, where we watched a CNN debate between Ted Cruz and Bernie Sanders on “The Future of Obamacare”. I enjoyed being able to meet some of our supporters for the first time and to hear their stories. From the social workers that came out because they feel their patients deserve better, to the small business owner struggling to meet costs, to the multiple sclerosis patient whose well-being depends on expensive prescription drugs, everyone agreed that it’s time to move on to a single-payer system.
As ACA draws intense political scrutiny, our campaign is concentrating on promoting a national improved Medicare for all (NIMA) system, as outlined in House Bill HR-676. And while we were excited to see Senator Sanders declare that “Healthcare is a human right” on CNN, we also know that over the next few months, we will have to push Senate Democrats to introduce a companion bill. When the Democratic National Committee came to Baltimore to hold a strategy forum two weeks ago, we held a rally in support of HR-676 outside of the Convention Center.
With a new administration in power, 2017 brings a great detail of uncertainty about the future of health insurance in the United States. Much of the national conversation on healthcare right now is focused on preserving the reforms of the Affordable Care Act, protecting the people who were able to access healthcare for the first time because of it, and fighting against the politicians who plan to repeal and replace it.
At the surface, the mobilization of progressive movements in support of Obamacare may come across as an endorsement of market-based solutions over a single payer system. Yet this is not the case. 58% of people polled nationally are in favor of replacing Obamacare with a single payer healthcare system. And the fight to protect Planned Parenthood shows an acknowledgment – one that spans across race and class barriers – that access to free or affordable reproductive care is a basic human right.
Even Trump voters, often unknowingly, support many of the principles that characterize HR-676. A recent Kaiser Foundation survey found that people who voted for Trump named transparency, equity and wider healthcare networks as improvements they would like to see prioritized. The report also found that Trump supporters who became qualified for Medicaid coverage under the Affordable Care Act were highly satisfied with Medicaid, and were concerned that a repeal of ACA would result in losing coverage. Respondents also expressed reservations about some of the Republican proposals that have been floated in the news. What the Kaiser report suggests is that the reason why many Americans do not explicitly endorse a single payer system has less to do with any ideological dedication to market-based solutions, and more to do with the way in which we have all been taught to accept that There Is No Alternative to them.
This gives us all the more reason to change the narrative and to expand the dimensions of what is commonly considered practicable, or possible. Mark Fisher wrote at the end of Capitalist Realism that so long as TINA haunts and immobilizes the public imagination, "even glimmers of alternative political and economic possibilities can have a disproportionately great effect".
As an organizer, one of the biggest lessons I’ve learned over the years is that in order to be successful, social movements need to be more than a rally against something, or a call for a return to the previous status quo, especially if the previous status quo was characterized by economic inequality. According to a recent report from the Maryland Department of Legislative Services, Obamacare reduced Maryland’s overall uninsured rate from 10.1% in 2012 to 6.7% in 2015. The Republican plan to repeal and replace Obamacare will put the lives of millions of people across the country at risk, and we need to fight that. But we must also fight for the 33% of uninsured noncitizens in our state, and the 23.6% of Latinx residents who remain uninsured.
Where mass movements that originally materialized to defend public goods from right wing governments have succeeded, that success often depended on their ability to develop and fight for a visionary alternative. And when it comes to fixing our healthcare system, it’s crystal clear that National Improved Medicare for All is that alternative.