A huge part of whether social change happens depends on what narrative people get. Whether publishing, social media, scriptures, what our friends and family repeat-stories literally shape our ideals, perspectives, what we do, who we support.
We have this illusion that we are given all the facts and are coming to our own conclusions-an illusion supported by the sheer volume of information we have access to that we didn’t before. I can see videos of police brutality in real time from a protestor on the street-I can see with my own eyes proof that a black man was assaulted. That isn’t an illusion. But the idea that because I have access to that democratizing flow of information my world view isn’t shaped is false. The narratives I see are still shaped by people who have agendas of their own-but it has become so seamless that it is hard to see.
Based on that illusion I was wondering why I was mostly fluff from O, Oprah Magazine on my social media feed. It seemed the strangest omission for this TV mogul, this billionaire who can make an author a best-seller with a recommendation, who produces Black TV and movies, who champions representaion-Oprah Winfrey knows how important her voice is. She knows exactly how to shape the way we think about issues, she hasn’t shied away from supporting the Black community. So why was I getting nothing but stories of Taylor Swift’s makeup? Or Meghan McCain’s pregnancy? Why wasn’t her name on anything related to George Floyd’s death, or Black Lives Matter, or protests around the country. It was a glaring omission. I had been on social media almost non-stop for the last 48 hours, glued to footage to try to make sense of the sheer volume of violence enacted by police on peaceful protestors, and these were the posts I saw from O Magazine.
So I went to the O, The Oprah Magazine’s page instead of relying on what was in my social media feed. It turns out that some algorithm had decided that I only wanted to see the fluffy posts. The next eleven screenshots are from O Magazine posts I had never seen.
Every single post about Black Lives Matter had been buried and hidden-even when the subject of one of those posts was Taylor Swift, a celebrity the algorithim had already decided I was interested in hearing about. Most startling to me are the posts where Oprah is directly addressing white women and their role in upholding systems of oppression-and I never saw them.
1.These are suppressed for a reason-if we had access to these stories about people caring deeply about injustice and police violence and racism it would absolutely shape they way we see the world. And there are obviously people who do not want to see that happen and are keeping white people from seeing this. These stories MATTER.
2. Even a billionaire with a media empire is subject to racist algorithms suppressing the messages she is trying to send. Do you have any doubt that social media had tried to suppress people without her vast resources and connections?
Today is Election Day in the United States. Voter participation is up in record-breaking ways already. The lines may be long today, so I thank everyone who sticks it out to participate in our representative democracy. It has it’s flaws as a system, but it is our system and right now it is a way we can peacefully neutralize some of the worst that has happened in the last two years.
If you care that we allowed 3000 preventable deaths in Puerto Rico, please vote.
If you care that the word “transgender” was stripped from official documents, please vote.
If you care that every time a mass shooting happens the government pretends that there is nothing they can do to help, please vote.
If you care that disabled and chronically ill people would die without health care, please vote.
If you care that black people are being executed extrajudicially by police officers, even in their own back yards holding a cell phone, please vote.
If you care that asylum seekers are being separated from their children and that they are being imprisoned indefinitely, and that TWO YEAR OLDS HAVE HAD TO REPRESENT THEMSELVES IN COURT, please vote.
If you care that our government has targeted Muslim people from coming to our country, even needing asylum, please vote.
If you care that we are doing nothing to prevent climate change and are selling our national parks to the highest bidder for profit, please vote.
If you care that our education system is being run by someone who doesn’t believe in public schools, please vote.
If you care that white supremacists have been emboldened once again, please vote.
If you care that a credibly accused, emotionally volatile man is now sitting on the Supreme Court, please vote.
If you care that the president has played nuclear chicken with North Korea, please vote.
If you care that we left the human rights committee of the UN, please vote.
If you care that our executive branch has lied thousands upon thousands of times in the last two years, please vote.
If you care that the executive branch has been nothing but a money-making scheme for the richest one percent, please vote.
A friend of a friend (I found out this last week) is the co-owner of the Red Hen in Lexington, Virginia. I am incredibly proud of what she did, how she interrupted the narrative that says we have to be docile in the face of those who want us to die by neglect or malice, who want our voices to be silenced by stripping our names from voter registers and keeping us quiet and “civil”-all while lying to our faces about what is happening.
The owner who asked Sarah Huckabee Sanders to leave did so respectfully, privately, and with as much care to all parties as one can when confronting the lying mouthpiece of a horrific administration without losing site that she is also human.
Sanders could have let the incident go, but instead decided to make an example of the Red Hen, that how dare anyone, no matter how thoughtfully and carefully, interrupt the the comfort and entitlement of the people in power. She, by announcing what happened, sicced her followers on the Red Hen, sicced the President on the Red Hen. They have had death threats and chicken manure dumped on their doorstep. Anti LBGTQ bigots camped out in front of the place.
My question is, if this administration really had all the power why would one person refusing one member of the administration a meal (in a way that let her maintain dignity as she left) require the full force of the President’s platform? They were trying to make an example of the Red Hen, to show the rest of us that we better not speak up. Instead the Red Hen is an example to us-that disrupting them works. Disrupt, irritate, slow down what they are doing, be a thorn in their side, a rash that makes it uncomfortable to sit wherever they please.
The stakes are very high right now, I am I so dismayed by rank and file Democratic senators who are chastising the Red Hen (and Representative Maxine Waters) for disrupting the system. There is a quote by Zora Neale Hurston I am reminded of, “If you are silent about your pain, they’ll kill you and say you enjoyed it.”
We are at that stage. 5000 people died preventable deaths in Puerto Rico. We have children in internment camps.They have tried to gut healthcare and providing food to poor children while starting trade wars and stripping environmental protections. We left the UN’s Human Rights Council for God’s Sake.
I have included a link to the Red Hen. (Click on the name) If you are so inclined, you can buy gift certificates and ask that they not be sent, that the money just be put back into the business to help them get back on their feet and to show support for how they stood up for what was right.
I have a sort of unusual essay/article out today at Rooted in Rights, a disability advocacy group. It is called As a Chronically Ill Mom, Even Tater Tots Are a Way to Show My Kids Love . It’s about being a mom, food being love, preservatives, the Standard American Diet and convenience foods, and it’s part of the conversation around Mother’s Day about what it means to be a disabled mama. I hit a lot of topics in 1000 words!
Hope you are all having a great Mother’s Day weekend!
I am very proud to be a voice in the Disability March II, a virtual movement of solidarity with the Women’s Marches this January 20 and 21. If you are also disabled (my chronic illness people who may be invisibly disabled, you know you count too, right?) please consider joining in by sharing your story as well. My entry is called Enough (a click on the title will take you to the link), and the more people we can gather the more we show the world that we exist and we won’t be silenced. Last year we had more than 3,000 participants by the end of January-I think we can get even more. Making disability visible.
I wrote this several years ago. Every winter day when I drove my children to school after Sandy Hook, I felt my chest tighten wondering if this would be the last time I saw them. I wouldn’t turn and walk away until I saw them safely in the building, knowing I would never live past the regret of not looking after them until the last possible second if they should die that day. I parked on a different street, walked a different route after that Friday in December, anxiety and magical thinking working together to make me believe that I was somehow protecting them by avoiding the things I did that day, the day small children were murdered in their school. A few months later the incident described below happened.
I think a few differences have happened over the last few years that make this story a time capsule of fear and hope that don’t carry over to today.
When this story took place, though I was scared, I felt that many good people were trying to figure out how to prevent mass shootings from happening again. I felt confident that every other mother and father in the country was feeling the weight on their hearts as I was. I was wrong. There were some very evil people who value money over children’s lives who have been operating covertly assuring that nothing-not even prior domestic abuse charges-got in the way of gun manufacturers selling more guns. Concealed carry became the norm in even blue states like Illinois. Open carry became the norm in red states like Texas. There is little to prevent any American from gathering as much ammunition and as many guns as a terrorist organization might procure. The mass shootings got even worse.
When this story took place I thought that we were starting to dismantle toxic masculinity. I thought we were turning a corner on how we raised our boys into men, that we were starting to assure them both that they were allowed to feel pain and that they were not allowed to use violence on their fellow human beings-that it wasn’t weakness to have feelings and it wasn’t a show of strength to abuse those within their world. Maybe this is a violent death rattle that will destroy so much more before these toxic ideas finally expire. I was a teacher. I had a firm belief that we had power to help change the lives of young men who could have turned to violence and enacted interventions to stop them. I still believe we can, but I do not believe there are enough people who want to find out how anymore. The young boys we had a chance of changing are now violent young men with more capacity to kill that we did nothing to dissuade.
When this story took place, I thought my fear could be contained by the idea of a school lockdown, that if I pinned my fears to this one location in space and time it wouldn’t infect the rest of my world. That the healthy white blood cells I had would route my panic and grief if I could stop it from spreading. Shootings have happened everywhere and the infection has spread. My white blood cells have given up; the infection has spread so far that I have forgotten what it was like to be fighting for my health and almost winning.
This story is both tinged with more fear than I now feel, because resignation has subsumed my alarm, and more hope than I now feel, because change I thought was coming was never on its way at all.
I never thought I would wish to be able to have the feelings in this story again. Once I get something so ugly on paper I hope to have flung the feelings that inspired it far away from my body. I now wish they still felt like they were a part of me.
There are red and white lights flashing as I pull into the parking lot, but no sirens. I go to stand in the cold with the other parents, waiting for our preschoolers to be released. They are not. A police car has come to silently join the fire truck and ambulance that are already here, and we realize that the children are in lockdown. This isn’t a drill.
“I knew they shouldn’t have put the little ones in a junior high.” The first parent among us starts to express our fears. I nod, almost imperceptibly, as I always thought it was strange to put three to five-year-olds in the same building as teenagers. It was a temporary solution to a space shortage, but an odd one. One that had already scared us, but we couldn’t protest as we were lucky to be getting services at all with so many budget cuts.
We sit stand quietly, tensed and staring at the door that won’t open.
“It’s been five minutes.”
I try to steady my breathing and hope against hell that the children don’t suspect that anything unusual is happening. That they are huddled in their coats and mittens and backpacks in a corner, following their teacher’s directions to stay silent and still. I am able to calm myself for a moment knowing that they always listen to her, even though they are squirmy tiny people.
“It’s been ten.”
We shift lightly back and forth on cold feet, trying to warm ourselves. Or maybe we are getting ready to spring. There are about forty of us who are realizing what it means to be the ones locked out: we can’t do anything to protect them. I fantasize about scooping up my thirty-five pound child and running, though I know that isn’t what you are supposed to do. And where could I possibly go to get far enough away? We are all listening, hoping that nothing unusual punctuates the silence inside the school.
The woman who first spoke up has a little boy who, at the end of each school day, runs straight for her laughing, yelling “Mommy!” She catches him up and swings him high into the air and lets him fall into her arms. Every day. She speaks again, “He had a twin sister. She had a hole in her heart and she died, as a baby.” More quietly she adds, “Nothing else can happen to him. To us.”
I finally use my words to dampen the panic in my throat. I say something about how it will be all right. I say something about how I know about these things, because I was a teacher. I was a teacher who handled these hormonal, dangerous teenagers for a long time. I knew they could be good and kind, and lonely and angry and confused. I tell them about how we handled a six-foot tall boy who brought a very large knife to school. Without injury. Without harm. And that the boy eventually came back and was welcomed and never hurt anyone. I say something about protocol, and drills, and empathy, and vigilance, and dedication. And redemption.
“It’s been fifteen minutes.”
I want to shatter the glass of the doors that won’t open and run to the room where I know my youngest is and be there with him. In case anything happens, it won’t happen without me. It can’t. I want to whisk him away from everyone else in the world forever. I want to put myself between him and everything. Where no one can get to him except through me, and he will not get to anyone else without my intervention.
Doors far from us open, and one slim boy is escorted out by four police officers. Silently, they box him in. He is in handcuffs, but his arms are not held to keep him from running away. He won’t. His face is the same as my six-foot tall boy’s.
The doors in front of us swing open and my preschooler is at my side. I grab his face in my hands to see that he is smiling, not worried. I hoist his thirty-five pounds against my hip, and realize how hard it would have been to run carrying him. And how impossible it would have been to know that I was locked away from him, and not even given the chance to try.
As a writer who mines her life for stories, it guts me to know that women have to put intensely personal stories of suffering on display every time the government wants to strip away protections we need for our well-being.
It makes me sick that women who may not be ready for anyone to know about the sexual harassment or even assault they endured feel compelled to speak out when Betsy DeVos rolls back protections for rape victims.
That women who have never before publicly shared the pain of losing a much wanted child after twenty weeks gestation have to go into detail about how they and their baby were on the edge of death to explain that banning abortions after twenty weeks is not protecting lives but endangering them.
And now Republicans are stripping away the federal protection that says employers must cover access to birth control pills and women are once again having to share personal stories about what access has meant for them.
I am extremely grateful women have, and I am going to share my story with birth control today to continue that conversation. We are realizing that we have more in common than we knew by breaking open these taboo subjects. We are reaching new understanding and empathy for what women have had to be silent about. But I firmly believe it is a form of violence to create a situation where someone has to bare their souls and all the intimate details of their lives at a time prescribed by someone else. It is a violation to create an atmosphere where people have to beg for their lives publicly, sharing things no one else has really known to get oppressors to see their victims as human. Yet here we are.
I would have told these stories anyways, in my own time, and I feel they may do more good than harm, but I do believe my agency to tell them when I want to has be taken away.
As a teenager I had intensely painful cramps. Every month the first day of my period was wave after wave of rolling pain that left me unable to stand, unable to breathe without pain, unable to live my life. The pain would be so intense that crying was out of the question, as the irregular jarring motion of a sob would tug my body even more painfully. I would eventually vomit from the pain and once I had I would practically pass out and sleep would help erase most of the pain. Ibuprofen and naproxen helped some, but were unable to touch most of the pain. I would miss a day of work or school each time this happened.
One afternoon in high school my period came a day earlier than I had expected. I started to slump over at my desk in pain and asked to go to the bathroom. About twenty minutes later a teacher found me there, lying on the floor, unable to get up the pain was so intense. I was taken out in a wheelchair barely conscious.
Going on birth control pills a few years after that saved me. I still felt tremendous pain each time my period started, but it became bearable, livable. I could go to school, I could go to work. I was finally able to not spend a day each month willing myself to be silent and calm and still when the worst pain of my life washed over me because breathing deeply through it was the only thing that could save me.
I was on a low dose birth control through college and the early years of my marriage when I became pregnant with my first born while still taking them. For a short window of time my body was very fertile, sending out eggs even with the hormones in birth control pills trying to convince my body I was already pregnant and didn’t need any to be sent out. I was surprised, but happily surprised when this happened. I don’t know how I would have felt if, without birth control pills at all, I would most certainly have gotten pregnant in my early rather than late twenties. I would not have been remotely close to ready at a younger age.
After the birth of my first child I went on very strong birth control pills, and was able to prevent pregnancy during a tenuous stretch of time when I was a very new mother with post-partum depression living far away from family. It should be noted that once we decided we were ready to be parents again I got pregnant the very first month I stopped taking birth control pills.
After my second child was born I developed fibromyalgia and for the first few years of his life I was in near constant pain. It would have been a huge burden for all of us to bear if I had gotten pregnant again in the throes of lightening pain that went up and down my arms and legs and back. We would have all suffered tremendously.
I am no longer on birth control pills, but only because I am now going through early perimenopause and take hormone replacement therapy that helps control the pain of fibromyalgia for me.
For nearly twenty years of my life birth control pills were absolutely necessary, both to let me live without the excruciating pain that ran my life like clockwork as a teenager and to allow me to have an intimate relationship with my husband without becoming pregnant with more children than we could plan for.
Birth control pills made my life MINE. It gave me some mastery over my body and my circumstances and was so very, very, important.
And I am beyond angry that they are to become less accessible again, that the agency of women to have control over their own family planning and in some cases the ability TO LIVE LIFE IN LESS PAIN will be put at a price many women can’t afford to pay.
And I am beyond angry that the agency women have to control the narrative of what birth control pills have done for women has now been compromised.
This weekend is an interesting (but not bad at all) one for me.
In the midst of celebrating Mother’s Day, I am attending a Die-In to protest the AHCA at a local representative’s office (Not mine, my representative is an outstanding advocate for us-the representative for the neighboring suburbs is not).
I announced I would probably leave the house by 10:15 am to which my kids asked, “Where are you going?”
Without looking up from his phone my husband deadpanned, “To die.”
Luckily my kids are, by the ages of eight and ten, used to being teased by my husband and always ask me, “No really, what’s going on?”
I briefly explained that a lot of people voted against my ability to have affordable health care in the future, that people will die without treatment and so we were symbolically going to pretend to be dead for a few minutes in front of a congressman’s office, to demonstrate what he voted for.
Along those lines, and in a less brief format, today also I have an essay up. It details a little bit of my struggles with chronic illness, my reaction to the recent vote and what it will mean for my family if it becomes law.
So, in a little bit I’m off to pretend to be a corpse. Then I’m going to visit with my parents and my kids in a park filled with lilac bushes, give my mom her customized #Iamapreexistingcondition t-shirt (I haven’t made my mom something with markers in a looooong time, I felt like a kid again) and enjoy both having a wonderful mother and being a mom to some pretty awesome kids.
Who are probably going to play Minecraft while I lie in a ditch somewhere.
Image Description: A t-shirt that says “I am a pre-existing condition” with a list of my illnesses, fibromyalgia, Hashimoto’s Thyroiditis, hypoglycemia, dermatographism, 2 C-sections, post-partum depression and food sensitivities
Image description: the back of the same blue t-shirt with the words “My life has value”
Image Description: a pink t-shirt with the words “I am a pre-existing condition” and a list of my mother’s illnesses, Parkinson’s Disease, hemochromatosis, Mitral Valve Prolapse, and C-section
The following essay first appeared on the website, Progressives of Kane County. Hence the somewhat longer introduction to who I am…
I want to briefly introduce myself. My name is Kristin Wagner. I was born and raised in the Chicago suburbs, and after living in Tennessee and Texas returned back home to raise my two boys. I am a wife and mother, a former high school English teacher and currently a writer. I volunteer at our school and take my kids to the pool in the summer and sit outside of piano lessons making up grocery lists.
I am also a chronically ill person. Though I am somewhat shy about using the term, I do identify as disabled. I have Hashimoto’s Thyroidistis, fibromyalgia, chronic urticaria with dermatographism, a dairy sensitivity, hypoglycemia, allergies, premature ovarian failure, and sometimes depression. I walk a tightrope each day to manage the symptoms of each illness without causing more problems with another illness.
The process of getting to a place, a decade after I began being actively sick, to where I can get by involved neurologists, gastroenterologists, endocrinologists, rheumatologists, allergists, gynecologists. It involved trips to the ER with unexplained pain, ultrasounds, x-rays, an MRI, an EEG, an EKG, a colonoscopy, steroid shots, and blood tests measuring almost anything that can be measured in a blood sample.
I am forever grateful that when I had horrible symptoms that could have pointed to cancer (ovarian and colon) that my doctors never hesitated for a moment to check. Those scans were negative. That when my blood sugar kept dropping for no known reason, my doctors tested me for diabetes and insulin-producing tumors. Those tests were negative. That when I couldn’t feel temperature we immediately checked for Multiple Sclerosis. Again negative. When I had such bad chest pain that my doctor thought I may have been having a heart attack, I was able to get myself checked out without worry that I couldn’t afford it.
I have been lucky. I have been in huge amounts of pain, but I am lucky. The entire time I have been ill we have had insurance. I have been afraid of what my illnesses have cost us in co-pays and premiums and prescriptions, but I have never gone without care. I have never had to ignore a pain that could be cancer or a degenerative disease because I couldn’t go to a doctor. I have never had to go without medicine I need because it was prohibitively expensive. I have been able to track down what is really going on when I feel too sick to move. And because I have been able to take care of my health, I can live my life as well as I am able knowing I will never really be “healthy”.
Thursday, May 4th 2017, the day that the majority of the Republican members of the House of Representatives voted for the AHCA, was devastating. All I could do was stare at my phone as the votes rolled in, stunned into silence that people who should be my voice, who should care about my life, were so happily cutting it in half. I cried because for the very first time in my life I was looking into the faces of men who rejoiced in the idea of me dying. I suppose I’m lucky it took me so long in life before I had that feeling wash over me. That day 217 members of my government decided that my life, my happiness, my ability to be as good of a mother and person as I could be, was too expensive. That my life wasn’t worth the money it takes to keep me going.
They voted to eliminate protections for people with pre-existing conditions. If my husband lost his job and we couldn’t afford insurance for a little over two months, every single illness I have on record might be used against us as excuses to raise our premiums to exorbitant levels, effectively pricing us out of insurance. The birth of my two sons, by C-section each time, might even be used against us. My illnesses and necessary surgeries could conceivably bankrupt us.
They voted to add annual and lifetime caps on coverage, which were both banned by the ACA. At thirty-eight, I very well may have used up what I was “allowed” to use up, potentially leaving me without continuing care for the illnesses I already have and any without any ability to deal with other diseases. Most likely more will come up. Having one autoimmune disease (for me, Hashimoto’s Thyroiditis) often means others come along (like Premature Ovarian Failure) and more might pop up later (like Rheumatoid Arthritis, or Lupus). People will die from lack of care, from lack of preventative measures, from lack of diagnostic tests.
I am not being hyperbolic. The 217 Members of Congress who voted for the AHCA voted to kill constituents, to shorten their lives, because keeping people alive and healthy is expensive. There are definitely people in the world who subscribe to the idea of eugenics, who have no problem letting disabled and ill people die because they, according to this horrific philosophy, don’t contribute economically as much as totally healthy citizens do. May 4th the Republican Party voted, gleefully, to cull the sick and the poor out of our country for the financial gain of the already wealthy and the insurance companies.
If this unconscionable bill passes the Senate, I do not know what I will do to try to stay physically healthy. I will most likely try to get by on the bare minimum of care, so that I don’t exceed my annual or lifetime caps, assuming that if I am going to live as long as I can more diseases will find me. My quality of life will be diminished as I spend more time in pain or exhaustion than I needed to, because treatment that exists will no longer be accessible. We will be abundantly cautious with our money, taking no risks. We’ll have my husband stay with his progressive company, saving as much as we can to forestall an inevitable bankruptcy. Maybe I will hide what I’ve been through, leaving no paper trail to suggest I am less healthy than I appear on the outside. And yet, I am comparatively lucky. We still have money to save, my husband still has a job at a good company, the illnesses I already have are (for the most part) not degenerative. There are people who will make it only a few years, a few months, a few days, without continuous care.
Even if this bill dies as soon as it passes through the Senate doors, I do know what I will do to stay more psychologically healthy. I will do whatever my sick body will let me do to rid our government of every single Representative who, by voting yes on the AHCA that day, demonstrated the lack of human decency we associate with unmitigated, unredeemable monsters.
I’m lucky I still have a voice to help me do just that.
We are Americans. We should be taking care of each other, our sick, our poor, all of our people. We have the capability to do just that. A government’s job is to take care of the people under its care, to protect them from enemies within and without. We should protect all of our citizens, and when it comes to military spending we seem to think no cost is too high, no weapon too expensive. And yet… an estimated 43,000 Americans will die prematurely annually without access to affordable healthcare, the casualties equivalent to having a terrorist attack of the scale of 9/11 every single month.
Those 43,000 lives have worth. My life has worth. I am ill, I am disabled, and I am worth keeping alive.
Even if our Republican representatives do not think so.
I took a walk today, for my thirty-eighth birthday, since it was beautiful out and all the flowering trees are in bloom.
It dawned on me that this, today, this walk, was a good example of what life is like with chronic illnesses, a good illustration that may clear up some misconceptions.
I am very allergic to spring pollen. Right now my chest feels tight and congested, my throat gummed up and my body generally achy. I could stay inside with all the windows shut-that would make my physical suffering considerably better. Some days, when life is stressful, I choose to do so because dealing with feeling miserable all the time (even with medications) can be hard. My life indoors is still full and interesting. There are still movies and music and books and food and cuddling and crafts and games that I can enjoy locked away from the outside world.
Some days I want to expend the effort to be in the middle of of these beautiful things that make my life demonstrably harder. Literally, these gorgeous temporary blooms make my skin itch and my eyes water and my head hurt. But it is worth it, sometimes. It is worth the extra discomfort to get to enjoy something that is outside of my comfortable realm. I just celebrated Easter and a beautiful wedding on the same principle-the discomfort of knowing I might feel rough from overexertion was worth it to see family and to celebrate with them. But I did end up feeling very rough.
Just because I am happy, and happily occupied, doesn’t that I am suddenly healthy and well. Almost 100 percent of the time I feel at least a little ill, and the majority of the time I feel sick (maybe nauseous, maybe weak, maybe in pain, maybe just congested and stuffed up). I look well because the markers we use to figure out if someone is sick-a green pallor, a disheveled appearance, a frown, an inability to do the activities we want to do – are often absent when I am doing something I enjoy. So people mistakenly think I’m healthy.
And just because I feel sick in the middle of a happy occasion doesn’t mean I am automatically sad. When generally healthy people feel sick, they (for the most part) stop everything. Normal life is put on hold, and when you have the flu or a cold you give yourself permission to just feel bad. When you feel better you go back to normal activities. There is a separation between the two worlds-one is full of rest and recovery and feeling both emotionally and physically down, the other is full of activity and fun and feeling emotionally and physically up. For chronically ill people there is no clean division. I can be physically very unwell but still emotionally very happy. I can be physically well and emotionally unwell. Sometimes I do get upset about my limitations when something I want is outside of my reach. Sometimes I push my limitations as far as they will stretch to bring something I want in reach and pay the price later. But my life isn’t a stunted or limited one.
As long as I have agency over what I do, I get to decide for myself what I am or am not capable of at any given time, I have a good life. Not an easy life, no, but a good one. This is unthinkable to people sometimes, that its possible to have a good life in the middle of illness or disability. It leads to misunderstandings. I hope I can clear some of that up.
I was brilliantly happy to take a walk through my neighborhood today, snapping pictures of all the flowers, breathing in the scent of lilacs.
I also feel like I have a brick sitting on my chest, and I could use some ibuprofen and caffeine to combat this headache I’m getting. Or am I feeling worse because I ignored my hypoglycemia guidelines and had a cinnamon roll for breakfast and need some protein? Is it allergies or fibromyalgia making my neck hurt?
No matter, I have a birthday/therapuetically-necessary-every-six-to-eight-weeks massage scheduled for tomorrow. And a dairy-free dessert to make for myself for later.
Today is International Women’s Day. This particular March 8th is also, in the United States, Day Without a Woman – a general strike to highlight the importance of women and how their contributions of both paid and unpaid labor are grossly underappreciated. I have been spending all of this week leading up to today trying to figure out how best to honor both.
The easiest way to support the day and the strike is to wear red, a show of solidarity with women fighting for equal rights, opportunities and recognition. Done. I’m wearing red, my two kids are wearing red. Easy.
The next is slightly harder. As women purchase 70-80 percent of items and services for sale, women are asked to refrain from purchasing anything today, to demonstrate how much our purchasing power is worth. Another way to do that is to purchase exclusively from women-owned companies. I will be purchasing an item to support the wonderful online site The Establishment, a bastion of intersectional feminism and support for writers (they pay every writer for every story they publish-which is unusual and welcome in the world of online publishing). I won’t be buying lunch, or dinner, or groceries, or clothes, or books, or my kids’ haircuts or an oil change for the car today.
The last is the most difficult. Women are called upon to strike from all paid and unpaid labor today. Except for the once-a-month tutoring gig I do get paid for, all my labor is unpaid right now. I am a published writer who last got paid for an essay in 2007, and a stay-at-home mom. When my husband is not traveling for work, we already share household chores and child-raising tasks equitably. He doesn’t need a reminder of what I do, and I feel appreciated. And if I refrain from writing, I lose the opportunity to advocate for recognition of the work that women do. So I won’t be taking time away from unpaid labor.
I also never thought of it this way before, but I have women in my employ. I am a chronically ill person who functions most weeks as a single mother would, taking care of everything while my husband travels for work. We have a service come and clean our house every two weeks to help. Vacuuming, washing floors, dusting high shelves, scrubbing toilets: I can technically still do all these things. However, the pain and energy cost of doing these chores (my fibromyalgia tends to flare) leaves me bankrupt for days sometimes, unable to do other things that need doing. I am so grateful to have the three women who do this work for me. Wednesdays happen to be the days they come. I appreciate what they provide for me so much, and know I am a more productive person if I let this work still happen. If they do strike today, I am completely supportive and understanding. If they do not, I will try to make sure to tell them how much I appreciate the work they do.
But, most of all, what I want to do today is explain just how many women make my world possible. I have lived in the world of women for a decade, a world of stay-at-home moms, retail workers, grade school teachers, pediatricians, nurses and volunteers.
I will start with school. From the early intervention services that my youngest had at age two, to the fourth-grade teacher my oldest has now, almost every single educator my kids have had have been women. Since preschool my oldest has been taught by at least thirty teachers and four teacher’s aides, and only three of them have been men. Since early intervention my youngest has had four speech therapists, and at least twenty-four teachers and teacher’s aides, I think one of whom has been a man. We have a male principal, but the vast majority of workers at the school, from the school secretaries to the lunch moms to the volunteers who organize fundraisers and room parties, are women. Grade school workers are notoriously underpaid and in a capitalist society being underpaid means being underappreciated. I love our school.
I went to work out today. Seven out of the nine receptionists I see regularly are women. When I peek in on classes, I have yet to see a male instructor. Most of the trainers are women. All of the instructors for early childhood classes at my park district are women.
I thought about spending time at our library. I have seen two male librarians over the course of nine years.
Where we get our boys hair cut, eight out of the nine hairdressers I see regularly are women.
Grocery stores, at least half the employees are women. Fast food and slower paced restaurants seem to be the same, at about 50%. So is our local post office.
Clothing and shoe stores? Almost 100% women.
Our local food pantry and community services administrators? 80% women.
Emergency room at our local hospital? The boys and I have only ever seen two male nurse versus about twenty female nurses. We’ve seen two male doctors versus at least ten female doctors.
The pediatrician’s office? All the nurses are women. Half the doctors are as well.
We would visit my mother when she worked at the offices for our local church. A full half of the support staff the offices, and roughly 90 percent of the teachers for both year-round parochial school and CCD were women. And these are just the paid positions. Mothers often volunteer to help even more. In fact that’s how my mother got her foot in the door for this job in the first place.
Most of the women I know, whether they work outside the home or not, do vast amounts of unpaid and unappreciated labor. I once had a conversation with other moms who were completely shocked that my husband did the grocery shopping for our household. I was told that to expect their husbands to do this task was completely unthinkable. Working women still do more household and child-rearing chores then working men. Stay-at-home mothers are still looked down on as if they aren’t contributing.
Most caregivers for disabled people and the elderly are women, both paid professionals and unpaid family members.
On top of all this, is the emotional labor that I have seen women do for free. The labor of keeping relationships healthy, families emotionally whole, communities functioning and working together.
The contributions women make to this country, to the world, are staggering.
The last other thing I am going to try to do today is to spend time not only thinking about how much would be lost without women doing the too-often invisible work of the world, but how much would be lost without their voices too. I have set my playlist to all the music I own either written or sung by women. I am reading I Am Malala for the first time.