Body Issues

WHY YOUR ADVICE TO CHRONICALLY ILL PEOPLE IS CONDESCENDING AND VICTIM BLAMING

It’s inevitable, if you are chronically ill people can’t seem to run over themselves fast enough to offer some advice regarding what you should do to get better. Whether it’s family, friends, coworkers, or perfect strangers, it seems everybody has heard of some amazing new miracle cure that is sure to help you. Even if they hadn’t heard of your condition until five minutes earlier.

“Crohn’s? What’s that? Oooooh. Hey I’ve heard that people fix digestive issues with by giving up gluten, have you tried that?”

We know you mean well. It’s instinct, you see a problem, and you want to help fix it. But it happens time and time again. What started out seeming sweet soon becomes just a constant reminder that everyone thinks we’re incompetent.

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HOW ADHD SHAMING ALMOST KILLED ME

TW: Discussion of Depression and Suicidal Ideation, descriptions of self-harm.

Just getting diagnosed with ADHD was a struggle. I remember the doctor I was seeing at the time giving me a lecture about drug seeking behaviour. When I pointed out that there were easier ways to get drugs than trying to get an appointment with a psychiatrist she relented but asked me why I wanted to be diagnosed if I wasn’t in school anymore.

The cultural perception of ADHD is that it is just a matter of too much energy. You hear all sorts of people extolling the virtues of good old fashioned exercise, or warning people about the dangers of giving children drugs similar to amphetamines. No one takes the time to think about how medications work. This is evident when they start talking about Ritalin or Concerta being the sit down and shut up drug.

ADHD changes the way you think. Not what you think, but rather how you think. It falls into the category of brain conditions that are considered neurodivergent.  It also has a high rate of comorbidity with autism. It’s not just “undisciplined” or “lazy” kids who need more exercise, it causes structural changes in the brain and can even impact how you react to different medications.

Most people however still have a hard time believing that the condition even exists.

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Dear New Crohn’s Patient: What they don’t tell you

Growing up, I had never really heard of Crohn’s. In my first year of university, my friend told me about her ex who had the condition. She told me all about how he was in constant pain, was in and out of the hospital. She told me about how difficult his life was and how there was little he could do, mostly because he was too tired or in too much pain.

So understandably, when a doctor first suggested the possibility that all my problems were linked to Crohn’s disease, I was thrown for a loop. I knew next to nothing, and what I did know was not good. It didn’t help that the diagnosis has basically been yelled at me at the time. I was in shock. I was afraid. I thought my life was over.

What does having Crohn’s even mean!?

What is Crohn’s? – from a medical point of view, Crohn’s is an autoimmune disorder, like allergies or arthritis. Autoimmune disorders refer to a class of illnesses that result from your immune response mistaking a part of your body for a foreign invader. The antibodies attack this part of your body resulting in swelling which in turn causes a variety of related issues. In the case of Crohn’s disease, the antibodies can attack any part of your digestive system from your mouth to your anus, however, the majority of the disease is often centered on your colon and large intestines.

What does this mean?

The obvious result of this is pain resulting from the swelling. It also causes nausea as your body struggles with passing food. It may result in blockages of the intestines, and often leads to IBS like symptoms such as frequent diarrhea and watery stools. Swelling of the intestines makes them delicate and liable to tear. Many of the symptoms of Crohn’s are related to the resulting ulcers that appear.

What no one tells you is that is also causes exhaustion and chronic fatigue, it can cause your joints, and persistent inflammation can also lead to memory and recall difficulties. No one tells you that you will get used to the sight of fresh blood in the toilet. You will become sensitive to smells, like a person experiencing morning sickness, certain smells will have you running for the bathroom.

Most people learn early that Crohn’s often leads you not to absorb digested food, for some reason however, no one thinks to mention that for a lot of patients, you also stop absorbing oral medication. In the midst of a flare, anything you take orally may not work at all. This includes of course, any pain medication you are trying to take to get rid of the pain of the flare you are experiencing.

Saying hello to Crohn’s means saying good bye to trusting doctors while also being completely dependent on them.  You are a Zebra in world where they only really know horses. Not even zebra, more of a rampaging moose that gets named a zebra by someone who has only ever seen a horse. While you are at it, say hello to endless ridiculous suggestions about things that will absolutely cure you! They won’t.

No one tells you that anything that wakes up your immune system: allergies, a cold, if you menstruate, any of it can make your symptoms worse. Whether it is actually making them worse or they just feel worse because of everything else that is going on I cannot say, but I do believe it is not unrelated.

No one tells you that, no matter how extroverted you are before the diagnosis, when you are flaring your energy for socializing wanes dramatically. All you want to do is sit at home and watch TV or Netflix, or movies, just something low energy. You break invitations, because you just can’t know in advance if you will have the energy that day.

No one tells you that you will feel guilty for being sick. You might feel like a failure. This is normal. Many of us struggle with feelings of guilt. You are not alone, and let me repeat that it is not your fault.

We live in a world that prioritizes productivity and tends to dehumanizes people with disabilities. Living with Crohn’s means crossing over to the other side from normal to not.

No one tells you these things, and because they don’t they also don’t tell you the tricks that we learn over time.

Pot.

I know I know, I’m starting to sound like a broken record. But honestly, I never would have looked at the stuff if not for Crohn’s and this is the case for many people I know. One eager little smoker I know grew up Mormon, and was positively terrified of the stuff. Now her still Mormon mother encourages her to smoke thanks to the relief she gets. That’s all I will say on the subject.

If you don’t want to turn to herbal treatments, *aren’t I hilarious!?*, there are ways that you can make prescription pain killers work when a flare makes absorbing them difficult. While this method needs to be used with care, you can grind up some of your pain killers and put them under your tongue. The veiny mucous membrane allows some of the medication to seep direction into your blood stream without needing to pass through your inflamed digestive system. It is advisable to use only a portion of the full dose at a time, since this method is a bit more direct than traditional digestion.

Some medications are also available in liquid form, although for some reason doctors often fail to mention this. You can request liquid dilaudid for example, which has more chances of success than a pill.

While alternative treatments are mostly bunk, there are some otc things that can help you get through a flare. Baby wipes with some witches hazel for example, help prevent your sensitive regions from chaffing horribly from the frequent bathroom trips. Also, don’t be afraid of baby rash creams.

Anaesthetic hemorrhoid ointment is a metaphorical godsend! The anaesthetic helps the whole area calm down when the inflammation gets particularly bad. In some places you have to get a prescription for it, but sometimes you can get it directly from the pharmacist.

Heat can be a great help. Warm baths can soothe all sorts of pains and cramps. If you are particularly dry because of dehydration, you can add some Aveeno bath oil to come out well oiled. A heating pack placed on your abdomen can help a lot in this regard. Ones like these, though of course you are welcome to explore other varieties that work for you.

It can be helpful to have a little emergency kit you carry with you: a clean pair of underwear, some wet wipes and lotion, anything that might make the experience of having an attack in public easier to deal with. They do often tell you this, but it helps to mention it anyway. That, and they won’t tell you to also pack a high tolerance for humiliation, some excuses as to why you are throwing up in public (Morning sickness works pretty well), and also the knowledge that most of the time, you are actually the only one who knows even though it feels like everyone is staring.

That’s something you will develop with time. Living with a disease like this changes you. It makes you learn more about yourself than you ever knew before. Your tolerance for things that others would find unbearable will raise exponentially. You develop a strength that cannot be understood by those who haven’t been through something like this.

This strength is there regardless of whether you feel strong or not. Regardless of whether you are bearing up well or not. Regardless of whether you are working and productive, or whether you are curled up in your bed determined never to get out. Whether you bear everything with stoicism and grace, or whether you go shrieking and weeping. No matter what, you have strength, and you are allowed not to handle it sometimes. You are allowed to have bad days. You are allowed to complain, and whine, and to be tired, and to take care of yourself.

Self-care is essential, because ultimately, the less stressed you are, the more time you spent making sure you are ok, will actually make your symptoms, if not better than at least, less exhausting emotionally.

Crohn’s mean that not only do you have a bad ass, you are a Bad Ass!

Welcome to the club Crohnie.

Hospital Limbo

It pains me (ha! Get it?) to admit that I am in the midst of a Crohn’s flare. If the increased pain and nausea weren’t a dead giveaway, the swollen ankles and wearing a sweater on a day that was 30 degrees (that’s high 80s for you Yanks) make it kind of hard to ignore.

I really am not shocked. I suspected something was up when I realized I was blowing through my faced with the difficult decision of whether I could go without my meds or whether I should risk supplementing my prescription just this once with herb bought illegally. Of course with the Colorado trip having drained us financially, I may well face that decision anyway this month. If you are willing to donate a little extra this month to our paypal, we would be extremely grateful. Or get something from my Etsy store! Yes, it is that kind of month. Please consider helping. 

For most people, the decision of whether or not to go to the hospital is a relatively easy one. You are in pain, your leg is broken, the division between “well” and “need assistance” is clear. Yes, there may be some vacillating when you are sick, but the idea is still, there is a clear sign when something is wrong.

For people with living with chronic illness, it can be hard to tell when you are just experiencing worse symptoms or when you need hospital assistance.

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A Day in the Life of a Crohnie

I woke up earlier than I meant to because of pain. I had to use the bathroom, again.

Even though I had my Remicade relatively recently, my Crohn’s has been acting up. A month of stress followed by a bad scare where I couldn’t medicate in response meant that even though I had had my meds, I was still pretty delicate. Combine that with working hard, and my body is making itself heard that it’s unhappy.

I did what I could to clean the balcony, before collapsing in the chair.  It was not even noon yet, and already I was exhausted. If I wanted to eat, I needed to take my meds. Until then, the nausea made any thoughts of food more than unpleasant.

Taking my meds is now laced with anxiety. Thanks to my upstairs neighbour, every time I decide to take it I am worried I will get another visit from the cops. The anxiety of course just aggravates my conditions and means that it takes more meds just to make the pain go away. Forget about anything more than that.

Lunch is a box of rice with some ground beef. Something simple and relatively delicate, and still it ends up being too much for me.

The next hour is painful. I can’t take more pain medication since I need to drive Alex somewhere, so instead I wait, and try to distract myself with Facebook. Finally, I ask her if I can drive her early so I can get home sooner. She agrees, and I can focus on something else for a few minutes.

As the weather shifts, my joints decide to join the party. My spine plays pop-goes the weasel as I shift around my chair, trying to find a less painful position to sit in. With the pain in both my back and my intestines, it is hard to tell which hurts worse. Back home, I smoke another marijuana cigarette, but it’s not enough, so I roll another. In between I try to distract myself with Facebook, wishing I had the energy to work on a story idea I have, let alone work on the blog network I’ve been trying to get funded.

By the time I manage to make enough pain to go away, it’s almost dinner time and I have to think of what to make. I can’t handle much and I know it. The leftover Pho I have sounds like a good idea. I should add some kind of meat, but when I start looking through the freezer my already inflamed skin just can’t take the cold. I’ve been spending more time in the sun, trying to make sure that next winter my depression doesn’t get as bad as this year. I don’t have a sunburn, but like many people with autoimmune disorders, I have sun allergic skin. It doesn’t happen every time, but often going outside can mean that I get hives or that my skin simply starts to feel full of pins and needles. Ironically, if I had a lounge chair, I could lay down and expose my back to the sun. While my skin might not like the sun, the patch of psoriasis hates it more. Sometimes sunlight can help make the patch go away.

I decided that broth and noodles is probably better for me given my sensitive stomach. Turns out even that’s too much.

I am in pain again. I look at my marijuana order from this month and worry. I cannot afford to buy more even if I hadn’t bought my full prescription this month.

It’s a bad day, but not the worst I’ve had by any stretch. I’m nauseated and coughing, but I haven’t yet been throwing up. My bathroom trips are painful, but not as frequent as they could be, and my level of exhaustion doesn’t exceed the usual. I can still stay awake, though naps are tempting. I need a sweater to deal with the cold though, even though it is still warmer than it’s been the last few months. I hope that with enough medication I can cut down this flare before I end up in the hospital, but it wouldn’t be the first time I wasn’t able. I hope not though. I really don’t want to end up on prednisone again.

Taking more medicine means that my mouth is constantly dry. My stomach can’t handle juice right now, and an unfortunate association with being badly ill makes nausea and water not a good mix. I’ve been guzzling pop as a result, just trying to make my tongue feel less like resin covered sandpaper. I’m hoping I can handle some tea.

Update 1: Not ten minutes after posting this, I started throwing up. And so it goes.


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Stir Crazy

I sit here, almost perfectly still, but inside I’m thrumming. I have this urge to move, fast, in some random direction.

All winter I’ve been trapped inside. Trapped by the cold, by my lack of mobility, my lack of money. I only leave the home for errands, doctor visits, and the rare outing. My whole world becomes defined by the same set of streets, the same spot in the apartment. Day after day, dragging on. The sun sets too early, and I sit, surrounded by darkness except for the small light and the glare from my computer screen.

I am trapped still.

Driving in my car, to the store or back home, I am seized with this urge to just keep driving. To go somewhere new, see something different, do something outside the norm. I just want to go somewhere. See what’s around the corner, what’s around the river bend. I want to explore. I want to escape, if only for a little while. I want to see where the wind takes me.

I just want to keep driving and see where I end up. Maybe with some goal in mind: maybe seeing a friend I’ve been dying to meet in person, or helping another friend for a few days as she tries to get settled. Maybe without some goal, just driving where my instincts take me, till I find some place I can sit in the sun and let my head clear.

I want the wind blowing through me and around me to clear away the cobwebs and the dust of the last few months. I want to sun to warm up the dark places inside me. I want a few moments of self-imposed solitude, rather than the loneliness forced on me through circumstance.

I want change, just for a little while. Just to refresh me, so that I can come back just a little bit lighter, reminded of the fact that freedom still exists.

But reality traps me. I am imprisoned in a cage made of poverty and disability. I can’t afford to go on an adventure. I can barely afford my medication to keep my body free from pain. I can’t afford a vacation, to escape from my existence. I can’t take a break for even a moment, to forget that I have to scramble constantly, to make sure we can find some way to make sure that are lives are a little more stable, just that little bit less desperate. To find some way to afford Alex’s transition, and maybe get what I need to make my meds stop hurting my throat.

I am trapped by my own body, which won’t let me explore in any way without the mobility assistance of a vehicle. I am trapped by pain, which makes it unreasonable for me to travel anywhere where I cannot access my medication.

So inside I thrum, with unspent mental energy desperately looking for an outlet. With a fierce wanderlust, almost like pain, beckoning me elsewhere. I feel trapped and so I close in further on myself. I become claustrophobic, not of the space I am in, but in the trapped feeling inside my own mind. Old thoughts start to swirl around, scolding me for all the ways in which I am a disappointment. My feeling of being trapped drains my motivation, making it that much harder to finish orders, or write new posts, or work on other stories that I could maybe sell.

I seek refuge in sleep, in the escape dreams afford me, but even that is not enough anymore.

I just want just a few short moments of freedom.


 

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Let Me Take A Selfie

A few years ago, I participated in one of the Facebook status games. The point of the game was to reveal something about yourself, something that some people might not know or that you think they should know. Among the list, I included that I struggled with fairly severe body image issues. A friend of mine responded that she was surprised to learn that because she always believed me to be very confident. Since I have a tendency to hide my body, even as a nudist, and a tendency to show discomfort around my appearance, I was quite surprised to learn that she believed me to be confident. I asked her why she thought so and she replied: Yours always posting pictures of yourself.

It wasn’t meant as a criticism of me, it wasn’t meant to shame me, and it was simply an observation. I post pictures of myself, I take several pictures of myself, so therefore I must be confident.

As a culture, we’ve created this idea that selfies are a sign of vanity, and we are terrified of vanity. So much so, that we have built an entire culture predicated on teaching everyone to hate their appearance. We create impossible standards and then tell everyone that regardless of circumstance we must achieve it and maintain it. We’ve so thoroughly pervaded our social bias towards people who fall outside the “acceptable standards of beauty” that we as a society no longer treat them as fully human. Perversely, in an attempt to avoid the appearance of vanity we have instead created a cultural obsession towards an obsessive hatred of one’s self.

Ultimately, that is all that vanity is. It is an appreciation for one’s own appearance. It is a love for what you see when you look at yourself. It is a comfort in your own skin. Yes, excessive vanity can be dangerous, just like excess in anything is dangerous. But vanity, by itself? It is an act of self-love.

But selfies? They’re not an expression of vanity, they are a lifeline that reminds myself that I am not worthless. That I am not hideous. It is what allows me to replace my internal image of myself from one of loathing to one of acceptance. Because I don’t love how I look. I hate it. I can’t look in the mirror without desperately wanting to cut off some pieces of myself. Without wondering how anyone can possibly be attracted to me, and wondering if every sexual interaction I’ve ever had was a lie. My body, my appearance, was the weapon used to cut at my psyche over and over and over again. I was told it was the reason I was alone.

Those words, those cuts to my self-esteem are part of the reason why I let myself be taken in by users and abusers when I went out into the dating world. It was the excuse for every negative interaction with people I was interested in. They’re the reason that I sat like this, to avoid my rolls showing up through my shirt, because then people would think of me as fat.

Ania at 14 sitting with her back arched so as to not show any bulges

It is what made me think for years that the girl in this picture was fat.

Ania at 13 standing in front of the Notre Dame

Then I figured out that if I was careful I could take pictures that highlighted the few things that I do like about myself. The contrast of my features against my skAnia in a black tank topin, the darkness of my hair, the colour of my eyes, all things I could appreciate about myself. They were things that let me believe that I had value, that I was worthy of love. Especially in this world that goes out of its way to tell me the opposite. These pictures, these pictures that are used to mock my vanity, to mock the very hutzpah of daring to love even the smallest part of myself when I am so far from perfect. Because how dare I. How dare I?

Older picture of AniaHow dare I look to myself for validation when the world teaches me that I should rely on the approval of men, regardless of whether I have any interest in their approval. How dare I not be grateful for the compliment that men deign to bestow on me, regardless of whether I want them, or whether they make me feel unsafe and like a target. The one that tells me that I am never allowed to refuse an advance because I’m ugly and so they are doing me a favour my being with me and tells me I am not allowed to have standards.

So no, I don’t need you to tell me that I am pretty. Because I have my selfie, so that I can tell myself what I need to hear.

Because that’s what they are. They’re selfies, and they have nothing to do with you.

 

Lessons from a Root Canal

For the last four months, I have been struggling with extreme dental pain. Four months ago, I went to the dentist for the first time in over 3 years. I had three cavities that needed filling, and I was getting the first two filled. After the procedure, I started feeling pain in my teeth and jaws. I didn’t know what it was, so I went back to the dentist. She said that it was probably just healing pain but to come back if it continued, and that I would probably need a root canal. Unfortunately, I left the country to visit Alex’s parents. For the next two weeks I continued on a cocktail of Aleve and Tylenol. The pain wasn’t getting any better. It was getting worse. The day we got back home, I called the dentist and made an appointment. It would be in a week. Then two days before the appointment, on New Year’s Day, the pain got so intense that I couldn’t do it anymore. I went to an emergency dentist, who did an x-ray and gave me an unexpected answer: my wisdom teeth, which were already eventually to be removed, were infected and needed to be removed right away. There was nothing he could do so he gave me x-rays and some painkillers and sent me on my way.

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11 ways ELITE DAILY used ableism to make a point about relationships.

I understand the impulse towards showing your best self at the start of any relationship. I do and have done it as well. You want the other person to like you and you are terrified that if they find out how flawed you really are, that they won’t.

So you put on make-up and wear your hair down. Maybe you wear a skirt, or that itchy shirt that you look amazing in. You might show a little more interest in something than you otherwise would. You don’t lie, not at all; you just never realized how interesting this actually was.

It is human nature and it is fair to mock it. But then lists like this one come out that point out how the acceptance of “gross” things that mark a committed relationship. I look at that list and the first thing I think is: How nice it must be to be abled.

I am going to borrow the list and instead talk about the ways in which it is ableist as fuck. And So my wonderful readers:

11 ways ELITE DAILY used ableism to make a point about relationships.
((The following list is a direct quote from this linked article and does not belong to me. What does belong to me are the comments between the number.))

“There’s no demanding need to shave.”

Ok so mandatory feminist statement: There is NEVER a demanding need to shave. But let’s talk for now about some of us who enjoy smooth legs, I among them. My decision not to shave has nothing to do with a lack of caring, but rather a decision not to inflict pain on myself.

I have a permanently damaged hip. I cannot bend in a way that makes shaving comfortable. I literally cannot reach certain parts of the leg. This also created a much bigger risk of cutting myself. So I don’t shave except as an occasional treat for Alex or myself. This decision had nothing to do with the quality of our relationship. Actually the first time Alex and I hooked up, my legs were hairy with several days growth.

“You fart in front of each other.”

This presumes control of bodily function. This presumes that everyone gets to decide if and when they fart. This presumes so much, that many of us don’t get to decide.

“Poop is discussed in any capacity.”

I wish I got to decide, I didn’t. Having an accident in the middle of a midterm made that decision for me. What is worse, is that as early as that happened in our relationship, that wasn’t even the first time the subject came up. People with digestive issues, people with chronic diseases, people who have had bowel resections or live with colostomy bags, people who have had their lower bodies paralysed in such a way as to lower their ability to control their bowel movements, all of these people like me might not get to decide when we start discussing poop.

“You let him pee in the shower when you shower together.”

This presumes that he has control over his urine.

“Morning breath doesn’t gross you out.”

During crohn’s flare ups, I have to make the decision whether it is better to brush my teeth and throw up or whether I shouldn’t brush and as a result not spend my morning throwing up bile. Morning breath is the least of my concerns.

“Sicknesses don’t make kissing off-limits.”

I am immunosuppressed. My partner not kissing me when they are sick has nothing to do with how much I love them or how much they love me. That decision is based on the fact that a two day cold for them could be two weeks of misery for me. It could mean having to postpone my Crohn’s medicine and adding a flare up to things that are wrong with me. Just now I had the flu that lasted for two months. Near the end I couldn’t tell whether it was the virus causing me to throw up or my Crohn’s.

But let’s ignore contagious sickness for a minute, and focus on other definitions of sickness such as say vomiting. I can’t tell when I first threw up in public in front of Alex. I do remember the warmth of the hand massaging my back while the other held back my hair. I do remember that we hadn’t been dating that long that the kiss that followed was in any way required.

“Weight gain isn’t a big deal.”

Weight has been my cross to bear for as long as I can remember, and now more than ever it is intimately intertwined with my disabilities. My weight gain, my diet, my exercise are all things that keep me up at night. The implication that it should be a big deal or affect the intimacy of my relationship keeps me up even more. The social perception that fat people like me are not entitled to love is such a pervasive bit of fat shaming that it has formed our whole script surrounding relationships. If you don’t think so, I dare you to watch every episode where a man has to prove his love for his wife by realizing he loves her enough to find her sexy when she gains weight.

“Despite all of this, you actually still find your significant other sexy.”

This is the one that cinches it all. That underlines the problem. Everything on this list is considered gross and unsexy, and all of it can be related to disability. I haven’t listed everything here so as not to be redundant and not because there is one thing on this list that isn’t in some way ableist (and also possibly cissexist, transmisogynistic, sexist, classist, and so forth). These things are considered gross, as are the people who do them.

For many of us with disabilities, these things are a major part of our lives. In other words, according to this list, I am gross. I am unworthy of love. This is just yet another perpetuation of the social idea that people with disabilities are sexless and loveless. It is a lie, a damned lie, and damaging to many of us.

On the day that I received my diagnosis of arthritis, I cried. Nothing major had happened yet. It hadn’t really factored into my life at all yet except as an occasional twinge of pain which pills took care of. I had no idea what was coming. I had no idea that by that time the next year I would be in a wheelchair after several months of walking with a cane. For all intents and purposes, the diagnosis was a name for something that hasn’t really happened yet. It was nothing! And yet, I cried. Why? Because I was convinced that it was this news that would doom me to dying a virgin. That I would never marry, never find love, all because I had a diagnosis that others might find scary.

I wasn’t disabled yet and I already knew what the social script had in mind for me.

And lists like this don’t help. Because they just serve as a reminder to all of us, that us disabled folk better not get too uppity by thinking that we are entitled to being treated like human beings.

Worth Less

In my fights for women’s rights, I have been startled to see how often the issue had an important element of disability activism. Take abortion rights and access to birth control.  I am under consideration for being included in drug trials. My participation includes the need not to become pregnant.  In order to ensure this, it is important that I have access to birth control. This means that doctors or pharmacists who choose not to make birth control readily available don’t just take away my rights as a person to make my own medical decisions; they are actively putting my health at risk. In the event that I do get pregnant, having safe and easy access to abortion services is necessary. As long as I am not in remission, being pregnant is a serious risk to my survival.

Similarly, my atheism and skepticism is brought into sharp focus by my struggles with medical conditions. Responding to religious and anti-science pundits is a daily act for those of us who are disabled. We face woo on a personal level, with it directed directly at us from friends, family members, and authority figures. Even non-atheists are harmed by the lack of secular services available to help those in need within our community.

Disability activism highlights the importance of intersectionality since it can be the result as well as the cause of discrimination and marginalization. Many people who fall within the category of being trans, queer, women, people of colour, and so forth live with the very real risk of physical harm and abuse, and as a result are at risk for anxiety, ptsd, depression, and physical impairment resulting from violence.

If we define disability as a physical or mental barrier from successfully and/or comfortable navigating our society, then race, gender, sexual and gender orientation, can all be seen as being disabilities. Perhaps disability activism should be then seen as changing the world in such a way as to make the whole world more accessible to people of all genders, orientations, races, religions or lack thereof, and physical and mental ability. Where potentially other social justice concerns differ from disability is that in the case of the former, the barriers are almost universally external, whereas in the case of the latter there do exist internal barriers as well, which may be further strengthened by the external.

Our society has such a negative attitude towards disability however, that even people that fall into the socially accepted definition of that category struggle against being labeled as such. “I’m sick, but I’m not… you know… disabled.” It is hard to make the argument that disability is in any way a positive. Disability is painful, whether mental or physical. It makes your life harder. It can make it difficult to live a life that is socially deemed as worthwhile or productive.  The personal aspects of disability won’t change, but what can change are the external barriers that exist in our societies. By changing our concept of normalcy from “white cis straight able bodied male who is financially secure” we can begin to change how our society handles differences.

Take mobility impairment for example. Most of our architecture and infrastructure is predicated on the assumption that people can walk. As a result, most buildings, sidewalks, and so forth are difficult to navigate for those of us for whom mobility is an issue. Where mobility disability is taken into account, it is usually in such a way as to be out of the way. Elevators are the most common solution, but of course elevators break down, are not consistently implemented, and in the event of an emergency such as fire, they are inaccessible.  Imagine if we had a paradigm shift and instead based our architecture on the idea that a percentage of the population is not mobile? What if we replaced all stairwells with ramps? True, ramps take up more space then stairwells as they have to have lower incline then staircases do, but such a change would not negatively impact anyone. In fact, it would be beneficial to more than just the wheelchair bound. Parents with strollers, for example, would have a much easier time navigating, as would anyone who relies on wheel-based carriers. There would be a lower incidence of injury as falling down a ramp is less physically intense then falling down stairs.

Our culture’s obsession with ranking relative value and worthiness is at the heart of many instances of oppression; white is more valuable than not-white, male is more valuable than female, cis is more valuable than trans, so forth and so forth. We do this with every aspect of our culture: someone who becomes a janitor or a blue collar worker is seen as less valuable then someone who majors in business. In fact blue collar or no collar work is seen as the domain of “stupid***” people, and anyone who is “stupid” is inherently less valuable.

People with disabilities struggle with the concept of worthiness, or more specifically worthlessness, in particular. Our culture values productivity above many other things and the definitions of productivity can be limiting. When you exist in a body that forces you to spend entire days in bed for no other reason than because the pain you feel makes it too exhausting to get up, it can be difficult to feel like you have worth. When you see your friends and family members have to rearrange their lives around you, you get caught thinking over and over again, is it worth it? You feel like a burden. You feel worthless since by conventional standards you are not a productive member of society.

By the standards of our current society, we are worthless, and we are introduced to this idea every day.  We hear about how people who rely on disability support payments are lazy. Every time someone talks about how they were “useless” because they spent the day in bed or at home, it is like a hot needle of shame shoved in our hearts. It is a reminder that as far as the majority of society is concerned, we are worthless.

Casual ableism is so prevalent in our society that in many ways what many would consider the most benign of insults, are actually terms most often used to marginalize people with disabilities. That’s so lame, dumb, stupid, idiotic, retarded*,  he’s so blind, slow, crazy, such a spaz, all these phrases and more have lost in the social memory the association with disability. And yet, that association exists. Imagine being a non-verbal child who knows that the designation for their impairment is used as a synonym for lacking in intelligence? Why is the opposite of cool or awesome a word that means having mobility impairment?

This casual ableism is prevalent in many social justice communities as well.  Often, little to no thought is given on how a given subject, action, and what not affects the disabled. Marches are organized without thought on how this limits participation by those who have difficulty with walking. Having sign language interpreters is the exception and not the rule. The activist behaviours most accessible to people with disabilities, the creation of online petitions, writing, Facebook posts, is given the dubious label of slacktivism. This term is given without consideration of how for some, these may be the only outlets for social change available to them.  Many in the community see nothing wrong with comparing religious belief to mental illness.

Within the feminist community, when calling out the gas-lighting behaviour that associates the word crazy with women, little to no thought is given to the inherent trouble with using crazy as a pejorative. What about women with bipolar disorder, depression, anxiety, ptsd? Is it ok to call them crazy since in some ways they are? Is it ok in that case to disregard what they have to say as unimportant, lacking in reason or merit?

When these concerns are brought up the thoughts are often dismissed as unimportant or at best thought exercises. When prominent atheist activists like Miri of Brute Reason have brought up the negative impact on atheists with mental disabilities to compare religion to one, the matter sparked some debate but no pressure existed to enforce a change of behaviour. The culprits had no fear of continuing their actions, even where they had previously done so to accommodate other social justice concerns.

In other cases where concerns over ableism or inaccessibility were brought up, they were met with hostility and immediate dismissal.

When members of the community are dismissed or forced out from their positions due to their illness, we do not see the same level of public outcry as if someone were let go for reporting harassment, or forced out due to their race, beliefs, or gender expression. The marginalization or discrimination against people with disabilities doesn’t cause scandals. It is as most a blip on the radar evoking the half-hearted response of “that sucks”.

Disability concerns are an after-thought at most, if that. When it comes to activism, disability doesn’t have the sex appeal of issues such as sexual orientation, gender, and race**.  When you are someone who struggles with disability and particularly with raising awareness of the issues as they exist within our communities, this dismissal creates a feeling of resentment. This is particularly the case when an inability to raise awareness on such issues means a continuation of the devastating impacts of living with these disabilities.

When a known member of the community struggled with potential homelessness as a result of their disability and inability to get the support they needed, the response was half-hearted at best despite the money being asked for being less than outrageous. Raising it took a long time, putting pressure on the person in question as homelessness loomed. This occurred around the same time that the response to an unknown preacher losing his job due to a publicity stunt involving atheism raised in the tens of thousands in a matter of days.

We as a community need to respond to the call to arms to support our own members. Members whose everyday struggles are a lived manifestation of the need for atheist and feminist activism; our members whose struggles are intimately intertwined with the professed concerns of this social movement. It is time to examine our own ableism. It is time to let wounded voices have a chance to speak. It is time to show the morality we claim of ourselves. A response to arms means more than just bringing awareness to a necessary social issue; it can quite literally save lives. I call on all those who call themselves humanists, intersecitionalists, to shut up and listen.

 

*I include the word “retard” here as a strengthening example, with full knowledge that it is becoming less socially considered to be benign.
**It is worth mentioning that when it comes to social justice, race concerns are dismissed more frequently than many of the others and is lacking in representation among our community concerns.
*** My use of the term stupid in this case is to illustrate how the term is used as a pejorative against people who have different types of intelligence. It was included with an assumption that I would continue on to explain how the term affects people with cognitive disabilities, but in the end chose not to include those paragraphs.