#whenwesayyes

Interview with body positivity activist and The Body Is Not An Apology organizer Tiffany McCulley about the state of the body positivity movement, her experience as a bearded lady, and why 'fat' and 'ugly' should not be dirty words.

http://thebodyisnotanapology.com/

http://thebodyisnotanapology.com/radical-education/bad-picture-monday/

Andrea Gibson's essay is submitted as part of The Body is Not An Apology’s #WhenWeSayYES Campaign. Raising money to build the world’s most powerful radical self love website. Give Here:www.igg.me/at/whenwesayyes

[The above photograph is of Artist Activist Andrea Gibson in a bent over squatting position. Their hands are crisscrossed and cupping below their knees.  They are wearing brown, laced dress shoes, black jeans that are cuffed at the ankles. There is a set of keys hanging from their right hip. They are wearing a fitted red and black plaid button up shirt with sleeves rolled above their elbows and stark black suspenders. Their hair is nearly shaved on the right and left side with longer bangs that slightly drape over the left side of their forehead. The back is shoulder length with shaved sides. Their facial expression is intentional, holding and soft. They are stooped in front of a body of water with a rusted metal structure back and to the right of them and a faint cityscape in the distance behind them.]  I’m gonna come right out and own the fact that I’m a hypochondriac.  For as long as I can remember I have been unusually anxious about my health.   When I was a kid my mother made a list of all my ailments and hung the list on the refrigerator hoping it might open my eyes to how unlikely it would be for a person to actually have that many things wrong with them at one time.  On any given day the list might read something like this:

1)  Tongue feels swollen when drinking juice 2)  Potential black widow bite on left ankle. 3)  Feels like there’s TV static in my left big toe 4)  Ears ring after hoola-hooping 5)  Skin cancer freckles 6)  Popping kneecap, possible dislocation? 7)  Heart isn’t beating right 8)  Asthma around the bbq grill 9)  Skin turns to grandma skin in the bathtub

I’ve had the privilege of having had enough therapy to understand where my fears are rooted, to know how they came about, and over the years I’ve managed to build some sincere compassion for the part of me that hasn’t always felt instinctively safe in my skin.  I also feel particularly fortunate that when I’m not in perceived immediate danger, I can step back and find some humor in the extraordinary imagination of my fearful brain.  But in the moment when IT is happening, IT is never a pretty sight.  Take for example the time i ate a handful of peanuts on the airplane then immediately convinced myself i had a deadly peanut allergy that was certain to kill me by asphyxiation thirty thousand feet above De Moines, Iowa.  I was sweating and gasping and grabbing my throat in a humiliating scene that I am sure made the flight attendant the hit storyteller of all her future holiday parties.  When i eventually crawled back to reality, I had the same thought I always have after I’ve survived another run in with mind, “What is going to happen if I ever really get sick?”

In 2010, after several years of feeling generally not well, I woke up one morning with a sore neck.  By that evening my elbows and wrists were throbbing and pain was radiating through my arms and hands.   Within two week I had to hold myself back from screaming whenever I moved any part of my body.  If you’ve ever had a charlie-horse in your leg, imagine that kind of shocking pain in every muscle and joint, and imagine it every single day for nearly a year while desperately knocking down the doors of scores of doctors who can’t figure out what you have.  I remember being curled up on the floor of the Minneapolis airport after the last poetry tour I ever did without the help of a tour manager, knowing i would not be able to walk to my next gate. I was sobbing into the phone, my doctor’s sweet-hearted nurse having no idea how to respond to my screams, “My veins feel like they’re full of crushed glass! My blood feels like it’s made of crushed glass! Please please please help….”   

My spirit, during that time, atrophied as quickly as my muscles. Everyday I would wake up wanting to die and everyday i grew increasingly more ashamed that i could no longer take care of myself.   I couldn’t comb my hair without my shoulder stiffening into a hot cramp.  I couldn’t drive my own car because it hurt too badly to shift gears.  I couldn’t carry my laptop from one room to another. I couldn’t even sit on my ass, because my ass had literally disappeared and you can’t balance on an un-cushioned tailbone without pain.

It took almost a year, thousands of dollars in tests and doctors bills, and a seemingly unending maze of humiliation from the medical industry before i finally got diagnosed with Chronic Lyme Disease, a disease surrounded by political controversy at least partly born in the deep pockets of insurance companies who want to deny its existence so they don’t have to pay for its treatment. It probably goes without saying that a disease that people deny exists is the last disease a hypochondriac wants to tell people they have.  So when THE BODY IS NOT AN APOLOGY called me last week, almost 4 years after I started treatment for Lyme, asking, “Would you be willing to write something about your process of learning to say yes to loving your body while living with an illness,” I’ll be totally honest, my first response was “Absolutely not.”  

What eventually started stirring my YES, was realizing my primary resistance to speaking about my experience throughout these past years has been my fear of not being believed.  And while my particular history of run-ins with innocent packages of airplane peanuts has likely made me uniquely sensitive to the matter, our culture is notorious for refusing to believe the experiences of chronically ill people, not only people with Lyme.  What comes of that is not just an immeasurable amount of isolation and invisibility, but also unthinkable numbers of people who will suffer or die without ever getting the diagnosis, treatment or support they need.  If you'd like a resource for learning about Lyme I highly recommend checking out this site:   http://www.ilads.org  Something I learned years ago in conversations with trauma survivors is one of the most important things you can ever say to a person is, “I believe you.”  I know the instances in my life where I have personally failed to do that have caused an overwhelming amount of pain.

Over the last 4 years while undergoing intensive treatment for Lyme through a combination of eastern, western and holistic medicines, I have been extremely lucky to watch my health  improve.   Though I still have hard days, and though I often feel sadness about what i can’t do and what i may never be able to do, the experience of living with an illness has in so many ways positively changed my relationship to my body.   During my first year of treatment on a particularly difficult day, I was having a conversation with Carolyn Suslovich, a mentor/therapist/teacher of mine who has been living with Lyme for the past 30 years.  Sobbing into my hoodie in her couch in Denver I said, “I hate my body.  And my body hates me. My body is my biggest enemy.”  With her usual kind-hearted patience Carolyn said, “I think I have the opposite experience.  When I feel really sick, I feel extremely aware of how hard my body is working, how hard it is fighting to keep me alive. On my worst days I feel so much love and gratitude for each and every cell of my body working to pull me through.”  I’m not sure I’ve ever had the experience of having my perspective changed so quickly.  In that instant, I started seeing my body as my ally, and i started nurturing a new belief that i could trust my body to tell me the truth.  Pain, after all, is the body talking.  Panic is the body talking.  More times than not the message is simply, “There is more to heal.”  

Someone told me a few years ago that when a human dies the soul misses the body, actually grieves the loss of its pulse, its lips, its toes, its hands and all they could hold.  I think much of learning to say yes to loving body has had to do with learning to live in gratitude for everything my body feels, even its hurt and its terror, because of the truths those feelings surface.  That doesn’t mean I don't scream at the top of my lungs when I'm in pain, and it certainly doesn’t mean you’ll want to sit in my row if you ever see me eating nuts on an airplane, but it does mean the list of things I appreciate about my body is now longer than that list of things that once scared me to death, and I feel good about saying I think that's a solid start.

About Andrea Gibson

By Megan Ryland

What happens #WhenWeSayYES to accessibility? As someone who is typically identified as able-bodied, I haven’t been prompted to ask about disability and accessibility very often in my life. However, thinking about the radical possibilities of saying “Yes” made accessibility come to mind because I think it is an area in which saying “Yes” could have an incredible impact. An accessible world would require a significant transformation from where we are now, but it’s a future that people have been working toward for a long time and it’s one worth achieving.

Laws like the Americans with Disabilities Act of 1990 and Accessibility for Ontarians with Disabilities Act, 2005 may establish some basic principles about what areas, spaces, and activities should be accessible to people with disabilities, but they aren’t enough. These laws alone have not created a world that meets even basic accessibility standards. For example, people often have to sue businesses that violate the Americans with Disabilities Act, rather than count on businesses to anticipate their needs. Lengthy court cases so that your favourite restaurant installs a bathroom you can use? Jumping through legal hoops to attend a child’s wedding at a special venue? No fun and not equal.

The laws may give the legal tools to sue someone for refusing to build an accessible world, but they don’t create the understanding that would enable people to anticipate how to make spaces, activities, and institutions accessible. Accessibility is about the big things, but it is also about being able to attend a friend’s potluck or chat with someone online; there is no substitute for social standards that demand accessibility. It’s important to note that these Acts are pretty new, which highlights how far we have to go before we have created societies and governments that value, enforce, and build accessibility.  

It’s worth noting that disability theory emphasizes the importance of society addressing barriers to access. According to many disability theorists, disability is a social creation, rather than an objective state. This idea differentiates between impairment (a physical or mental reality that is experienced by someone) and disability (the resulting negative impact of how society chooses to handle/ignore/judge an impairment). Just because someone has an impairment doesn’t mean that they will experience being disabled, because society (as a collective series of systems) can enable or disable someone. This positions disability as a problem in society, not in people’s bodies or minds.

Vision is a great example. I can’t see clearly after about a foot in front of my face, but you wouldn’t know it by the way that I live my life. I have eyeglasses and contact lenses at my disposal to support my participation in whatever activities, interactions, and institutions I want. I am enabled by these medical appliances to do things like attend public school, read, drive, work in an office, cook, play sports, or watch television without additional support or strategies. My vision isn’t magically fixed--take away my glasses and I’m hooped--but I’m not interpreted as disabled because I have been enabled by a series of industries, laws, norms, insurance coverages, professions, and sciences. It has taken a lot of people and processes to support my participation in the world. It doesn’t just happen. Society has offered me access, due to a combination of my privilege (access to quality eye care and appliances) and its standards on what is an ‘acceptable accommodation.’ Essentially, I’m able-bodied enough to be swallowed up by the majority nearly all of the time.

[Photo: Brown, plastic eyeglasses sit folded on beige laminate.]

What if, as a whole, society said “Yes” to supporting the participation of all people? Can we even begin to imagine a world where that kind of radical support is in place? Instead of treating people as either able-bodied (presumed to be independent, self-sufficient, infallible, uniformly capable, and praised for it) or disabled (presumed to be dependent, weak, incapable, and shamed), we could create a world where all people require support without shame. This support is not the same for all people, but is required by all people, no matter how ‘able-bodied’ they might be at one time or another. In this view, accommodation and anticipating needs would become the rule, not the exception, and it might allow people to offer (and ask for) what would enable access. Developing accessible spaces and strategies for access would offer more options and greater equality to people regardless of physical or mental states.

It is important to imagine what it would be like if we said “Yes,” not only in preparation for that future day when things are Better, but also as a strategy for working towards Better. What might it look like in an accessible world? Or an anti-racist world? A gender equitable world? A world without homophobia? When we’re mired in the world as it is and facing “No” at seemingly every turn, picturing a “Yes” can be a powerful reminder of what we’re fighting for. It might also help us get there.

by Megan Ryland

Reflecting on the #WhenWeSayYES campaign, I realized that my first thought actually went to a memory that looks a lot like like a time I said “No.” In fact, it’s a memory of when I said, “Yes, my body is more important to me” -- more important than a pay cheque, or ‘sticking it out’ or proving I could deny my body. It only took me 9 months or so.

For 9 months, I worked doing data entry and repetitive tasks while seated for 8+ hours, with a few rigidly timed breaks. Along with 15 other co-workers, I typed as fast as possible to get through the workload and kept my eyes glued to a computer screen. Boo hoo, I know; I generally felt very lucky to have the job (honest), but I actually did spend some time crying over it.

It was quickly apparent that I was not made for this variety of data entry, as my first few weeks were spent in significant pain all day as I tried to get my speed up to the proper rate. Anxious to make the cut, I was giving myself stress headaches to match the backache and shoulder ache from the position, the sitting and the repetitive motion. Not a great start.

We have all probably had jobs that we don’t love. The economy being what it is, there’s probably a higher percentage of people in less-than-ideal jobs than usual. As a university student, I was quite familiar with having a job because I needed a job, not because retail is my passion or data entry was my calling. You make the best of it. You do what you can to be proud of the work that you do and enjoy positive aspects, whether that’s coworkers, perks or just a job well done. I have a huge amount of respect for people who make their living doing work that requires doing, not work that fills their heart with joy. Passion projects don’t make the world go round, no matter what anyone tells you. Someone has to be working jobs that provide pay cheques, not spiritual fulfillment, and anyone working that job deserves more respect, not less.

This perspective actually made quitting more difficult, because it made quitting seem unreasonable. All things, considered it was a pretty good gig! Who was I to opt out of a job that many people could not easily leave? A complainer? The privileged white girl who can just move on if the going gets rough? No one else seemed to be having problems and they had been working there for years. Maybe my body would adjust?

It did not. Or, well, it did, by announcing its displeasure. To manage the pain, I went to physiotherapy every week (thank god for student health coverage and student rates!) and my body fought with me about the work I was doing. My pre-existing back conditions when I began the job appear to have been particularly ill-suited to almost every aspect of my work, so my usual back pain exploded into a new level of problems. In hindsight, it was stupid to for me to damage my health for so long when I had the privilege of the option to leave to find another. It didn’t help anyone else that I tried to stick it out. It didn’t make me a better person. Logically, it didn’t even really make financial sense.

It took a 12 hour shift that left me dysfunctional with pain for a week before I realized enough was enough. It took me 9 months to say (admit), “YES this hurts" and when I did, I left a job that most people would enjoy, and that - minus the back pain - I did enjoy. But I couldn’t just “minus the back pain,” or the eventual numb fingers or weak trembling in my arms. I had to say, “Yes I hear you body. Yes, I will stop” despite instincts to stay.

A year later, my body is returning to  normal (Megan-normal, anyway). I look back and I shake my head, but I can’t feel too awful. This is what our economic system asks of people: Put a pay cheque above everything else, or you don’t eat. Put a job above your body, or you don’t make rent. I’m lucky that I could count on finding another position; that’s not everyone’s reality.

In 2010, 1 in every 68 Canadians were injured on the job according to the Association of Worker’s Compensation Boards and Statistics Canada, and that’s only counting the people who file a report and receive compensation. In 2012, nearly 1000 work-related deaths were reported, according to the Association of Workers’ Compensation Boards of Canada. The workplace can be a dangerous place to the health of many. I know that I’m lucky to feel safe where I work, and I know why it’s important to support worker’s rights, unions and labour movements that try to decrease risk at work--and fight for compensation when something does go wrong.

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CAMPAIGN VIDEO TRANSCRIPTION

The video opens to a black screen. The words "What happens when we say..." appear on the screen. The words fade and the word, "yes" appears. The screen fades into a series of pictures showing several different people being unapologetic about their bodies.

Sonya:"What happens when we say 'yes' to radical self-love? Well, if you're on Facebook, you get suspended."

The screen cuts to showing several different images of people being unapologetic about their bodies. Each pictures remains on the screen for a few seconds, but then is replaced by a sign reading, "CENSORED." The last image to be shown in The Body Is Not An Apology logo.

Sonya: "I'm Sonya Renee Taylor, founder of The Body Is Not An Apology. In 2011, I had a 'say yes moment' that changed my life. I did something thousands of people do every single day; I posted a selfie on Facebook. I know that doesn't sound very radical, but the truth is, it didn't matter how fabulous or beautiful I felt, the negative voices were telling me that I was not beautiful and that is I posted this picture, everyone in the world would know it too. I decided not to listen to that voice, and instead to say 'yes' to my true inner voice of self-love and I shared the photo.

An image on Sonya in a black corset is shown next to a list of Facebook comments and likes. This is the selfie she posted.

Sonya: "The next morning, 10, 25, 50 people had all shared photos where they felt empowered in their bodies. That's how the movement was born. I decided I'd create a Facebook page and that I would name it after a poem I wrote, The Body Is Not An Apology."

The image cuts to a recording of a slam poetry show Sonya performed at around the time The Body Is Not An Apology was founded.

Sonya: "Oh! I recently started a group on Facebook. Please go on tonight and like it. It is called The Body Is Not An Apology. *Audience applause* And this is the poem that spawned the Facebook page, that will spawn the movement -- I'm claiming it. And I will leave you all with this, The Body Is Not An Apology."

The image cuts to Sonya today, she says:

Sonya: "I had no idea that morning that this message of radical self-love; that it should be for everybody no matter our race, age, gender, sexual orientation, ability, size would resonate with the whole world, would move spirits and minds all over the planet. Today, we have over 33,000 followers in 32 countries and not a penny spent on advertising. Despite all of our challenges with Facebook, the movement continues to grow and we have accomplished so much. Now, we need your help. The Body Is Not An Apology wants to build the world's most comprehensive online information, education, and community building platform focused exclusively on radical self-love as a tool for transformation and global change. This is not your regular website. We're partnering with the amazing EverydayFeminism.com and they've agreed to build this website at a fraction of the market cost. This will allow us to pay our current staff and hire new folks to make the movement continue to grow. You can help The Body Is Not An Apology grow from being a grassroots social media movement, to a fully sustainable social enterprise with integrated curriculum, coaching, and community platforms. I want you to take a look at the perks on the side of the page and say 'yes' to the one that feels right to you. I promise, today is the perfect day to say 'yes' to radical self-love 'cause the truth is, what happens when we say 'yes' is we change the world.

The video cuts to an image of a middle-aged woman. She says:

Woman 1: "When I said 'yes' to love and compassion, I let life be my teacher."

The video cuts to an image of a young man. He says:

Young Man 1: "When I said 'yes' to take care of my body, I stopped smoking."

The video cuts to an image of a young woman. She says:

Young Woman 1: "When I said 'yes' to my creativity, I felt complete."

The video cuts to an image of a middle-aged man. He says:

Man 1: "When I said 'yes' to California, my entire life changed."

The video cuts to an image of a young man. He says:

Young Man 2: "When I said 'yes' and believed I was smart, I finished my Masters program!

The video cuts to an image of a couple. They are holding each other. They say:

Couple: "When we said 'yes' to love, we were reunited."

The video cuts to an image of a young woman. She says:

Woman 2: "When I said 'yes' to myself, to experience life."

The video cuts to several images of different types of people one at a time. They all are saying the word, "yes!" An image of a middle-ages woman appears on the screen. She says:

Woman 3: "I just totally love that idea to stop apologizing for being a human being."

by Ronnie K. Stephens, Guest Writer

[Image description: Against a black background and on the right side of the image, the text reads "Say Yes." The word "Say" is above the word "Yes." The first letter of each word appears in orange and green; the second letter of each word appears in dark blue and light blue; and the third letter of each word appears in pink and orange.]

When I said yes to owning my faults, it meant that I answered my high school students truthfully when they asked questions about my past (and my present). A dozen or so students made my classroom home during lunch and we settled into a routine of honest conversations about hard topics. We have the largest population of LGBTQ students in the county, and many of those conversations inevitably dealt with the trauma of alienation, bullying, and sexual assault.

Midway through the year, several students asked me to partake in a Gay-Straight Alliance (GSA) meeting to help brainstorm some fundraising ideas. I suggested a performance poetry showcase, and the students set to work deciding on topics for the poems. Self-harm, suicide, and sexual assault went on the board almost immediately. We are a school of devastating histories.

One student, Ali Schellhorn, proposed slut-shame and body-shame. Since most students didn't know what the terms meant, she explained them. I backed the event whole-heartedly, reaching out to my good friend Lauren Zuniga to feature. She agreed. We started auditions for the student showcase. The poems were heartbreaking. They were full of truth. Full of transparency. And full of triumph.

As the date neared, they asked me what I'd be performing. I told them I didn't have anything ready, so I wouldn’t be part of the showcase. I could see in their eyes - it was an act of betrayal. I don't remember who, but one of them said, "How can you ask us to share our stories - our secrets - with a room full of strangers if you won't share yours?" They called me out exactly as I had taught them to do.

In less than five days, I wrote a poem I had been avoiding for almost ten years. A poem about the origins of my own body dysmorphia. I didn't share it with anyone - not even my wife. I practiced alone. Not once was I able to get through the entire piece without breaking down. On the night of the event, we decided to lead with the students. They were nervous. Their voices cracked. Sometimes they hit the back of the auditorium like fists. Sometimes we had to lean in to catch the syllables.

The time came for me to speak. My hands shook and my heart thumped hard in my chest. I got through the poem and introduced Lauren. As I walked back to my seat, I saw many of my students crying. My wife was crying. And then I did something I hadn't done in the entire time we'd been together. I cried. Actually, I sobbed.

What happens when we say yes is community. What happened that night was an origin story. An opening act. Ever since, my room has become a safe space for students all over the building. The students they saw on stage, or heard about through social media, are always there. Students who came to me scared and ashamed are now building up others. They're inspiring and supporting all forms of unapologetic living. Sure, we all stumble. But that's the most wonderful part of a community - we are never, ever alone.