"Dialogue"

Imagine an abusive family. Imagine a family that at every opportunity does what they can to tear you down. To scream at you and tell you how everything that happens is your fault. Imagine that it gets to the point where you cut off contact with them, block them out of your life. You do this, because every time you speak it ends up with them screaming at you.  It gets to the point where you are afraid to answer the phone on the off chance that it’s them. You watch every word you say or write because you worry it will somehow get back to them and trigger another fight, even if what you are saying had nothing to do with them. They look for excuses to be angry. You have to yell to be heard, but when you raise your voice, you are attacked for being too angry, for not listening, for being too aggressive. You are told to shut up and stop yelling, all the while being yelled at.

You cut them off, except cutting them off doesn’t give you any peace. They manage to get in touch with you through someone else. Someone they have convinced that they want to talk to resolve things. The person urges you to make up with them. After all family is family and it is not good to be divisive. You want to agree; you want to hope that this time finally you can have an honest discussion about everything that has gone wrong, on how their actions have made you feel. You want this to be over. You want your anxiety to end, and go back to talking about the things you both care about instead of being called names. But you also remember the last time they promised to work things out, when the dialogue ended up being nothing more than an excuse to yell at you some more. To tear you down just a little bit further. So you ask for a show of good faith; something small, but something to show that they are sincere. Or maybe something not that small, but something that has to be done for any resolution to take place. But they aren’t willing to make that sacrifice. Because it is not about resolution, it is about further abuse. It is about getting the chance to yell at you and abuse you further, but in a new location; a location, where if you don’t show up, you are accused of being the unreasonable one. It is nothing more than an attempt to get at you again; to circumvent your attempts to cut them out of your life for the sake of your health, or peace.

Abusers know how to make themselves look like the good guy. They convince everyone else that you are ungrateful, a liar. They trot out edited or incomplete versions of stories to explain how you are a troublemaker and really, they are the ones that are wounded and they are just trying to make peace for everyone’s sake. When you show other people the examples of the harmful things they’ve done to you, they insist it is out of context. They explain how it was all a misunderstanding and all you need to do is talk about it to make it all better. And there is nothing you can do, because it is physically impossible to bear your wounded heart. It is impossible to show everyone the scars that exist in unseen places; the anxiety, the depression, the despair. Even if they catch a glimpse of it, it is not the full story. Unless they have gone through the same thing, they cannot understand the pain and the hurt that comes with that kind of abuse and so they accuse you. They accuse you of being stubborn, divisive. For fairness sake, they grant that some of what might have happened to you is unfair, but they take “the middle ground”. All this, not understanding that there is no middle ground, because they compare an amputation, a fatal wound, to a paper cut and call you both equally injured.

Now instead of a family, imagine that this is a community. Imagine it is a group where you found acceptance for believing something different then everyone else. Imagine that this community talked about the persecution they faced for this common belief. They welcomed you and told you that they understood your pain. You felt so thrilled about the acceptance that you opened up. You talked about the problems you had because of your faith and they accepted you. You talked about the problems you faced because of people who denied reason and evidence and they accepted you. And then you talked about the problems that you have because of your gender identity, or your race, or your income level, and they shunned you. They shunned you and accused you of making it up. They yelled at you for being divisive when you point out how people in this very community sometimes treated you differently or badly because of things beyond your control. You think, they must have misunderstood, you don’t want to blame someone, you just wanted to offer suggestions on how to make this better.  But it didn’t matter. By bringing it up, you opened the doors. They no longer saw you as one of them and so they derided you. The screamed at your and harassed you. They sent others who thought like them to harass you. They screamed at you, they spread rumours about you and insulted you. While they did this they told everyone about how you had created a division in the group. They mentioned how you were spreading untrue stories about your oppression. They called you professional victim. They covered their tracks like abusers do. They smiled their way into people’s trust.  Then when you cut them off, when you finally said enough, they talked about how you were destroying the movement.  They convinced people that you were looking for attention. And then you insinuated that you would be willing to make up, to “have a dialogue’, for ‘the good of the movement’.

But this isn’t about dialogue. This isn’t about the good of the movement, or healing the rift. It is a chance to further harass you. To further show you that they can push you around and out of the movement, and still have everyone stay “in the middle”. If you try to defend yourself, you are blamed for being uncooperative, while their continued attempts are shutting you up are ignored or painted as childish pranks. What used to be your source of support is instead a source of anxiety. Your life’s work is mocked and ignored. But you are forced to put up with the harassment in the interest of discussion. Any show of faith you ask for is blown out of proportion.

When you point out that despite the beautiful promises of discourse, the harassment still continues, you are accused of being unfair. The other parties all want to be “neutral”. You are asked to ignore all the spiteful, hateful, in some cases illegal things people do to you in the name of “healing and dialogue”.  Maybe you were too harsh in telling people about your oppression. Maybe you didn’t have it that bad really. Maybe you did want the attention didn’t you, and maybe you exaggerated how bad things were just a little bit; for effect? They don’t realize that their neutrality is nothing more than silent consent, silent legitimization of the abuse you suffer. It is saying your black eye must have been the result of walking into a door at the same time that they ignore you being pushed down the stairs.

Albert Einstein said it best: “The world is a dangerous place, not because of those who do evil, but because of those who look on and do nothing.”

Neutrality is not always the best choice. Not when neutrality means ignoring the suffering of others in favour of false unity. Not when neutrality is hurting those who have not found their voice yet and keeping them from speaking.

"Dialogue"
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RANT: A Defence of Divisiveness

 

As a movement, secularists and skeptics defend dissent. We don’t just support it; we encourage it in the name of truth. So what is the hypocrisy that suddenly when it comes to dissent in our own movement that we call it divisiveness?

Intersectionality Feminists are called divisive because speaking out about race issues, women’s issues, oppression, brings out the worst in some people. Those people then go out of their way to make people who dare to speak out feel unwelcome. They send threats, post cruel harassing comments, and in some cases release private information for the purpose of stalking and worsening the attacks.

When people defend themselves by calling out the abuse, the reaction is to accuse those self-same people of being divisive, of causing rifts within the movement.

I think we’ve too long let harassers frame the conversation by letting divisiveness be seen as a bad thing.

What is divisiveness but a move to extricate and separate oneself from those who would abuse, harm, or persecute? It is dissent and an unwillingness to accept the status quo. In other words, it is what we as secularists and skeptics do!

It ignores the fact that we as a movement are already divisive. When we identify as atheists we are being divisive. We are dividing ourselves from those who have faith with no evidence. When we identify as evidence-based skeptics we are being divisive. We are dividing ourselves and dissenting against those who would peddle woo and false miracles.  Divisiveness exists with every label. It is not something to be ashamed of and sometimes it is necessary.

Our movement is no longer so small that we have to tolerate abusive elements just to maintain some quota of membership. No longer to we have to grit our teeth to accept those whose morals and values we do not agree with in order to have the support of numbers on our side.

It is time for the atheist, skeptic, secularist movement to decide who we want representing us. What values and morals do we want to be our message to the world? Do we want to be represented by those who would be a force for equality, or do we want to be represented by people who see nothing wrong with threatening women with rape? Those who stand up for other’s whose voice might be silenced, or those who try to silence those self-same voices?

Boycotts are essentially voting with your money and your feet. Everyone has a right to do so, and if enough people do it encourages change.

The difference between someone saying they won’t go to x conference because someone like PZ or Watson are speaking and calling for boycott is honestly just branding. When known harassers raise money to go to conferences to continue their campaign of harassment, or when they are unable to go, call on people to avoid conferences with those self-same speakers, they are doing the same thing. We’ve allowed them to frame the debate however by making it seem as though they are standing up for free speech.

 

RANT: A Defence of Divisiveness

Hate is not a Dissenting Opinion

The other day, a woman protesting an MRA event being held at Queens University was violently beaten by a man who knew her name, but was otherwise a stranger. The fact that this attack came right after she received several threats related to her protest of this event has created speculation that the attacker was in some way connected to one of the many MRA groups attending the event.

The event featured a professor who was “revealing the double standards in feminism”.  This is the same professor who was quoted as saying “I don’t believe in equality” during her talk, and was apparently completely unable to see the irony of a woman who became a professor complaining about feminism. The event drew the attention of MRA organizations like CAFE and AVfM. For those unfamiliar with it, AVfM was added to the Southern Poverty Law Center’s list of known hate groups.

The MRA movement is one that is inherently violent. On the surface, it brings up legitimate concerns including the tendency of men to be less likely to be granted custody and the lack of support for male victims of sexual assault. In fact those two issues should be given more attention and are frequently discussed in feminist circles (including but not limited to my talk at Eschaton 2012).

A closer examination of the movement shows that they do not actually care at all about sexual assault victims, and the men who consider themselves deserving of custody are actually violent abusers. One of the founders of the movement, Tom Ball, for example (who later committed suicide by setting himself on fire in front of a courthouse) would talk about how “All he had done was smack his 4-year-old daughter and bloody her mouth after she licked his hand as he was putting her to bed”. To many proponents of the movement, beating a child or a woman is no reason not to get custody. Clearly any man who hits his children hard enough to draw blood is just being unfairly discriminated against by the court system.

Male victims of sexual assault fare no better. Many who have gone to the sites in the hopes of finding support and resources often find themselves being denigrated and their manhood insulted.

In fact what the movement’s main actions seem to be are frequent threats of violence and rape against any woman who dares bring up issues of inequality, perpetuation of rape culture through campaigns to shame victims of sexual assault while denying that rape culture and victim blaming exists, and misrepresenting statistics to make it seem as though discrimination against men is taking place.

The movements main goal seems to be to bring us back to the “good old days” when women didn’t have the vote, weren’t allowed to work, and where men made all the decisions (as opposed to just most of them like they do now). The movement uses different forms of violence to achieve their ends, from microagressions, to rape and death threats, to revealing private information that was at times illegally obtained to the public (ie. doxxing). All of these employ psychological violence to achieve their end, and the escalation to physical violence is but a small step.  What’s more, studies show that even relatively benign behaviour, like jokes, legitimizes and encourages violence. If your movement is built on violence you will attract violent people and encourage violent behaviour even if that is not your intention. When your movement includes avowed abusers and admitted rapists that becomes a guarantee.

The underlying error of the MRA movement is that life and society are a zero sum game, where the only way that women gain anything is by taking something away from men. This is only true if we consider privileges like treating a segment of the population as property and objects and not as person’s within their own rights a human right.  The fact that the movement is made up predominantly of middle class to well off libertarian white men who also support and espouse racist, ableist, and homophobic ideas, shows that this is not a movement that cares about defending a population’s human rights so much as a bunch of whiny privileged assholes who are complaining that they are no longer the presumptive betters in our society.

While it is possible, though in my opinion unlikely, that the person responsible for the Queen’s student’s assault is not affiliated with any of the MRA groups, these organizations still bear a large part of the responsibility. Any and all universities, including Queens and Ottawa U, should think twice about their association and thus their implicit support of any and all persons who promote their ideology. In giving them a platform, they too bear responsibility of their hate speech and violence ideation, and the results thereof.

The MRA movement is nothing short of a hate group and should be treated with the same lack of respect as the Ku Klux Klan, neo-Nazis, or any other organizations whose purpose is to promote the hatred of vulnerable populations. This is NOT a valid response to feminism. This is NOT about celebrating men in the way that feminism celebrates women. This is NOT a reasonable other side of the debate. This is a terror organization that promotes fear to the extent that women attending a university event feel the need to use pseudonyms when asking questions, and feel the need to go to absurd lengths to protect their physical safety.  That we do not call them terrorists is in my opinion due to a societal bias that violence against women is somehow more acceptable than violence that includes male targets.

*If universities used to have 100% male attendance suddenly allowed women to attend university and increased their class sizes, then the fact that the male university attendance is 50% doesn’t mean that spots were taken away from men. That is not how percentages work. If University had 100 attendees all of whom where men, and now has 200 attendees of whom 100 are men, and 100 are women, you have 50% men but that 50% still amounts to the same number of men. This is just one example of the way in which MRAs misrepresent statistics.

Hate is not a Dissenting Opinion

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.

Worth Less

No Man Will Ever Love You If You're Fat

Weight has always been a big concern for me. I can remember being as young as 8 and being told that I was getting too chubby and that if I ate that cookie I would be fat. Throughout middle school and high school I went through various processes trying to lose weight. I would spend significant time at the gym, and while my body would tone, I could never lose that persistent belly.

I tried the Dr. Bernstein Diet to great success. I slimed down remarkably fast: and ended up with iron deficiency and a few months after going off the diet, ended up in the hospital with idiopathic pancreatitis. (Other members of my family also suffered negative health effects during and for the period shortly after this diet.) I lost weight so fast, that one teacher grew concerned when that fact was taken in conjunction with the needle marks (blood tests) on my arm. I managed to convince him that I was not a heroin user, but thanked him for looking out for me nonetheless. Despite the massive weight-loss however, that little belly paunch still did not disappear. However, after going off the diet, I ballooned almost immediately back to the weight prior to the diet. This, no matter how hard I tried to eat healthy and exercise.

The early symptoms of my arthritis, which appeared in high school, were dismissed as being caused by my weight. No xrays or further investigation was done.

Food became an obsession. Not for me the rebellion of drugs, alcohol, and sex. For me, the biggest act of rebellion was to indulge in a big mac at McDonalds, or to sneak the occasional cookie. Every moment of my life was about food and weight and the never achievable goal of weight-loss and the success of that perfect body. All my anxiety focused on it. If I eat this will I be accused of being fat again? Eating was equal parts pleasure and guilt. In many ways it was like sex and religion; that endless cycle of pleasure seeking followed by remorse and guilt.

I never delved into the classic displays of bulimia or anorexia. I never ventured so far as to purge or became obsessed with exercise. I have no doubt in my mind though, that if I spent time with a therapist, I would easily be diagnosed with body dysmorphic disorder and anxiety. That it never reached the level of being life threatening seems almost a miracle. That obsession with weight is not something I struggled with at all. Many of those close to me were similarly obsessed, and their watchful eyes and barbed comments only made the situation worse.

That I never dated in high school, only reinforced the idea that I was fat and thus unworthy of love. I believed truly that unless I was a size four, no man would ever find me attractive and I would be doomed to spinsterhood. Despite that feeling though, I actually still considered myself attractive. I had a cute face, nice eyes, great curves, tits to die for, and an exotic enough appearance with pale skin and dark features. It was as if I simultaneously existed in two different spheres: the attractive but chubby Ania and the fat and disgusting Ania. In my own mind, I could not wed those two ideas into a closer approximation of the truth.

When I left home and moved to Ottawa for university, something strange happened. Leaving the environment of weight obsession let me forget about it for some time. It no longer hounded my thoughts at every moment. Instead of thinking about whether my parents would find out about that chocolate I ate, or that occasional hamburger I indulged in, I was able to forget about it entirely. Those of you familiar with residence eating are probably not surprised to hear that my diet was worse than ever. At that time, the healthy options at the uni cafeteria were near non-existent and the cooking facilities were little better. Despite this however, I started losing weight naturally. Rather than gaining the freshman 15, I lost close to 20 pounds; this, without any conscious effort on my part.  The only time when those effects started to disappear however, was right before visits home. The return to those same people who were obsessed with my weight put me right back into that same headspace and once again food would become this unholy rebellion. I would sneak candy at an alarming rate, going through insane acrobatics to try and not get caught, often, with little to no success.

The lever of obsession with weight that still existed in my mind however was such, that when I was assaulted by a doctor at the clinic, it took me two years to even realize I had been assaulted. I was more upset and preoccupied at the inappropriate comments she had made about my weight.

The next few years were like a yoyo: there was the relatively though occasionally still messed up time I was in Ottawa, and the food obsessed binge eating person I became prior to and immediately after visiting home. The fact that my weight always came up at a visit, despite even requests not to bring it up only made it worse. There were times when I would spend visits home with a continuous monologue in my head wondering when the next attack would come. When would the next snide comment about something weight related occur once again? I practiced growing a thicker skin and ignoring any mention of, but invariable some button would be pushed, some nerve irritate, and I would blow up, the dam would break, and my self-esteem would collapse. The rate of collapse increased when it was my sister, 13 years younger, repeating some overheard “worry” or comment.

Then around the end of 2007, beginning of 2008, I began developing symptoms that would become a long and incredibly painful Crohn’s flare that was responsible for my diagnosis. It began with occasional twinges of pain in my stomach; relatively easy to ignore, although I did spend one evening in the hospital on suspicion of pancreatitis. More interestingly however, I was losing weight rapidly. On a visit from my parents, I discovered that for the first time in my life, I fit a size four. I had not even noticed the weight loss at the time. Over the following months however, the flare took a significantly darker turn. Food was passing through me without being digested at all, and I spent countless hours vomiting without control. I kept down maybe one meal in three, if that. I was constantly cold despite it being summer. I would alternate between having a mild fever, and having normal temperature. It became a regular occurrence for me to be admitted to the hospital with dehydration. The timing was such, however, that there was always some excuse for what was going on: liver infection, food poisoning due to broken fridge, flu. It was not until I realized that I had lost more than 30 pounds in the span of one month, that I realized I was in deep trouble. I went back to St. Catharines, and began the process of finding an explanation.

One aspect of this part of the story  that still gets to me was the mixed messages I was receiving. It became a common occurrence for people around me to say: “I know you’re sick, but you look fantastic” Here I was, quite literally flushing my life down the drain, and the people around me though this was the time to comment on my appearance. An appearance moreover, that was a direct result of whatever was likely going to kill me if no answer was forthcoming.

Eventually I was diagnosed and then came the introduction to a medication that will forever be associated with hell in my mind: Prednisone. For those of you unfamiliar with it, Prednisone is a steroid that is used to treat autoimmune disorders. It works, I will give it that, but it has some major effects that make it not useful as a long term treatment. For one, it destroys the hip. I already have extensive damage to my right hip due to the arthritis, and prolonged exposure to this medication would move up the age at which I will need to have it replaced.

Another symptom is that it makes you gain weight. Imagine that, after months of having a body that was desperately starved for nutrients, I was put on a medication that would make me gain weight. For those of you familiar with starvation in any way, you might know, that when the body is denied food for a long period of time, one of its first reactions is to store as much fat as it can. Add to that a steroid whose purpose in part is to promote weight gain, and you end up with a deadly spiral into obesity.  Prednisone when I take it makes me feel vile. Not only does it fill me with a strange type of energy that makes me want to lay down for fear of fainting dead away with the shakes and keeps me from sleeping, it leaves me with the sensation of being always full and somehow always starving. I compare it to the feeling of having a balloon (for some reason it is always red in my mind’s eye) blown to large proportions in my stomach. It presses against the sides and expands it, but is essentially hollow and begging to be filled. I try very hard when on prednisone to avoid as much unhealthy food as I can, lest the weight gain be compounded, but to no avail. No matter how careful I am, I always gain weight with prednisone.

That my Crohn’s is still not fully under control means that I am in a whirlwind of binging and purging quite beyond my control or desire. The weight gain forced by the prednisone has put me at a higher weight than I have ever been in my life and I despair. All the feelings of anxiety, of shame and guilt have returned, and with it, that deadly spiral of food obsession. Those who know me personally know that I am somewhat of a cook. I love to make lean, healthy, homemade gourmet meals at home. My diet, when discussed with nutritionists, dieticians, is praised, What isn’t seen though is the battle, the struggle, with forbidden items. I do my best to exercise how I can. The leg damage limits what is available to me being not allowed to run, bike ride, or otherwise put any pressure or stress on my hips. I swim as often as I can, and in happier times, I would dance salsa with Alyssa.

But the despair forced on me by the endless weight gain creates this cycle of shame, indulgence, and guilt. I indulge in chocolate, or cookies, or pop, or fast food. It isn’t often, but each indulgence fills me with such shame and guilt that I immediately rush out for more. I seek to repair the shame of indulging in that one cookie, by masking the pain with more sugar. I beg friends and my SO to help me keep from that cycle, but it backfires on me. Knowing that someone is looking over my shoulder at my eating habits only puts me back to that headspace I was in in high school and on visits home; that desperate need to use food as rebellion. To hide that box of chocolates I ate by putting the empty container inside the cereal box in the recycling. To beg Alyssa who puts the chocolate on a high shelf beyond my reach for just one more piece.

The horrible irony of all this is that fact that this struggle, this desperation is completely invisible. One of my best friends was honestly shocked to find out the depth of my body image issues, having always thought I was one of the most confident people she knew. What she didn’t realize is those pictures of me that I post on Facebook are just ones among hundreds. I chose the ones where I meet my exacting standards of personal appearance in a desperate attempt to remind myself that I am attractive, that these is something appealing about me and worth loving. Something to think of when my significant other tries, at times unsuccessfully to convince me of my own sexiness and beauty. Those pictures are desperate attempts at convincing myself of my attractiveness, so that I can boost my esteem enough to begin that process of healing and acceptance that will bring me out of this pit. But every word from “well-meaning” acquaintances about the benefits of fitness to people with my “conditions”, every sideways look from people on the street, every comment from doctors, and every picture of myself that I see that is not under my control, brings those attempts and that esteem crashing back down again.  Those smiles in the pictures, while sincere, mark an inner struggle and pain over once again having visible proof of what I perceive as my failure as a human being.

I will pull myself out of this. It will take time, support, understanding, and a lack of judgement. It will mean isolating myself from those who raise my anxiety and stress levels to the point of critical mass that pushes me into a spiral of guilt. And I will do so while catering to my dietary needs for Crohn’s and my restrictions for my arthritis.

No Man Will Ever Love You If You're Fat

Sticks and Stones

I hate that old saying “Sticks and stones will break your bones but words will never hurt me”. It is bullshit. Bones heal, but words cut you inside. Words stay with you forever. They become that little voice inside your head that undermines every single thing you do. They become that seed of doubt that makes you scared of being a failure, that makes you see everything you do through a dirty lens.  The wrong words are like parasites, burrowing their way into your brain and leaching your life of confidence, joy, esteem, laughter, sense of self.

The idea that insults, slurs, and more are not painful or not worth noticing has to do with our society’s idea that emotions are worthless. That emotions exist on a binary scale with rationality and that one who experiences one cannot participate in the other. Emotions are not irrational. They exist for a reason. They let you know what your boundaries are. My boundaries might not be yours but that doesn’t make them any less valid. If I say that doing this thing is something I am willing to unfriend for, you DO NOT FUCKING ARGUE WITH THAT. If you care to be my friend you listen to it, and if not then leave me the fuck alone. Or better yet, do us both a favour and unfriend me.

Emotions are a “sixth sense”. Not in the colloquial sense having to do with some sort of predictive power, but rather like touch, smell, feel, they are a way that we navigate and experience the world. Without emotion we lose a way we relate to the world and it is as much a disability as losing one’s sense of hearing or sight.

Words do not have just the power that I give to them. Words have power all on their own. They do not exist in a vacuum. If someone calls me fat, yes in that one instance I can choose to decide not to be upset, but that isn’t going to change the fact that I live in the world where people can treat me differently and badly because of that word. It doesn’t stop becoming a word that can be applied to me just because I choose not to be upset. If you grew up being told that gay people are evil, sinful, going to hell. If you live in a society that feels like they can refuse you your rights because you are gay, that gives the word “F*ggot” power regardless whether or not you choose to be offended by that word.

Words have a history that is not irrelevant. Being called a “r*tard” carries with it every single punch, every single instance of being discriminated against for having a mental illness. It carries with it a memory of every single person that has been called a retard. Every child that was killed for being autistic or being sick in some way. It may be just one time thing or it may something you are called every single day. It doesn’t matter. Those words will hurt, and they will stay with you.

The power of words is not just negative however. Words can also do great good. Those familiar with the anti-communist movement Solidarnoscknow that words played an important role. One of the main things they did was read all the literature that was banned by the Soviet government. And that’s the point. If ever you doubt the power of words, all one needs to do is look at the fact that all of the most authoritative and corrupt powers are so afraid of words, that they spend countless hours and resources on censorship. Words matter.

Sticks and Stones

Rant: Internet Harassment is a Big Fucking Deal

I just don’t have the energy to be eloquent anymore. I don’t have the energy to come up with ways to make what should be self-evident arguments sound polished.
I am so sick and tired of this bullshit argument that the internet doesn’t matter. That the harassment people face online is somehow not as bad as if it were happening through some other medium. That it is less dangerous, less personal, just less. What’s worse, is when I defend the validity of the paint and terror felt by victims of internet harassment, I am accused of somehow saying that stalking is somehow less serious or even not serious at all.

Frankly I am fucking sick of it.

To ignore the importance to the internet in our society is essentially to ignore our society. Our entire lives are dictated by the internet. It is where most of us get our news, how we keep in touch with friends and family, most of our work involves the internet in some way.

When I was working for law firms, and real estate agents, people’s cases, closings, purchases, sales, depended on my ability to access the internet. On my ability to be able to check my email, to be able to send emails.  While working, a significant majority of my day on the computer and most of that on the internet (if only with my email open and frequently refreshing).

When I came home I would also spend the majority of my time back home on the computer, talking to my friends,  writing on my blog and promoting my writing to help build my writing career, promoting my businesses which took place almost entirely online.

Since having to give up work due to disability, I still spend close to 12 hours a day either on the internet directly or connected to it in some way. Especially when my ability to interact with people in person and go out is hindered, the internet can be my only connection to the outside world. When (as it is now) my ability to pay my bills and buy groceries was hindered by my ability to work, it was the internet that came to my aid by donating money. When I needed help funding the ability to write my book it was the internet that did so. My connections with other writers who will introduce me to publishers happened entirely through the internet.

We rely on the internet, but it can be a tool against us as well. When harassment occurs through the internet it can feel more personal. The barrage happens in your own home, in your place of business, anywhere and everywhere where you have an internet connection. Even if you block everyone at the first hint of harassing behaviour, that first hint still has to occur. With the ease of creating accounts, your harassers can keep coming after you even after you have blocked them 3, 4 even 20 times.

If your harassers have access to your email, you have no choice but to browse through the endless tirades and hate messages. Even if you never open and read the emails, the previews give you an indication of their content. If they are using your work email, you may not even have the option to read and delete those emails.

When harassers doxx their victims, they are revealing private and identifying information. They give perfect strangers information about your phone number, your address, your place of business, and a variety of other identifying information.  They release this information on public sites where the information is accessible by strangers. This information is a where and when guide to stalking you.

You don’t even need to be in the same city to stalk someone anymore. With access to their information you can call their work, their home, you can email them, leave comments on their blogs or pages they frequent.

If like me, you operate online businesses, harassers can destroy your business without ever leaving their home; or worse, from their phones. Fake reviews, reporting false violations, all of these are simple for anyone of a mind to destroy someone.

Imagine everyday finding endless threats of bodily harm, of life, of safety, or of one’s ability to support oneself. Imagine these messages coming at you through your twitter, through your Facebook, through your email, left as comments on your blog, sent to your friends and coworkers when they cannot reach you. Imagine that the same people who harass you and/or your friends show up at conferences that you help organize or at which you are speaking. Imagine that your harassers donate money to the legal defence of another harasser who is suing his victim for speaking out about her harassment.

Imagine that your harassers make trouble for you with your online store, or through your websites.

Imagine that the companies you work for facilitate that harassment by siding with the harassers in public statements. Imagine that when you speak out about the devastating psychological impact that the constant harassment has had on you that people demand, DEMAND, that you release your private medical information to prove that the psychological consequences are real. That when you rightfully don’t want to release your private medical information to complete strangers that they accuse you of lying. That they make up lies about you and claim you are a professional victim.

Imagine that after releasing private information, or making you the target of their harassment, that they claim no responsibility when someone who is a stranger to you decides to assault you while knowing your name.

If you still think that internet harassment doesn’t matter or is no big deal, you can seriously fuck the fuck off.

*The scenarios presented are a composite or several different occurrences and not targeted or related to any one specific event.

** I have no interest in debating this or tolerating any abuse on this post or anywhere else. If I don’t like what you have to say I will block you and you can complain about how your rights to Freeze peach were violated by some big bad feminist on her personal feeds.

Rant: Internet Harassment is a Big Fucking Deal

What it Really Means To Be Poor and Disabled

The other day, I spent an hour and a half on the phone with the Ontario version of welfare known as Ontario Works. Of that, one hour was just being on hold. It took less than 30 minutes for them to decide that I don’t qualify. 30 minutes to decide that even though the money my non-citizen boyfriend makes is not enough to cover all of our bills, it is too much for us to qualify for financial assistance.  Our bills are not outrageous, but the reality these days is that life is expensive. Apartments, gas, communication, etc. the price for all of these is going steadily up while the income one can reasonably expect goes down.

Half an hour is better, I suppose, than the 6 months that ODSP took to respond. According to them, having extreme pain, not being able to walk long distances or stand for long periods of time, regularly bleeding internally, not being able to keep food down or stay out of the bathroom for more than an hour, all of this while also being immunosuppressed and so being frequently laid low with all the colds, viruses, bacteria, and more making their way through our population and air, doesn’t count as a disability. Crohn’s doesn’t count as a “A substantial physical or mental impairment that is continuous or recurrent”. Of course not! Why would something where your worst day means you in the hospital hooked up to IV nutrients, steroids, and pain killers, and your worst day happening every few months or weeks, count as a disability? It is not like being in pain, or in the hospital, or not having the energy to move because you haven’t digested food in days, impacts your ability to work. Of course NOT!

There have been lots of really good articles addressing how people look at poverty, at the unfair assumptions surrounding people who are poor, and about how insidious poverty is. A lot of these articles come from people who have gone through poverty themselves and are worth taking a look at.

One thing that people don’t seem to really look at however, is how much the systems of poverty exist to keep the underprivileged poor and desperate. How the system is particularly set up to make sure that if you are sick or have a disability that you better get used to desperation and fear. You better get used to doing without. That the system is designed to make sure that you feel useless, worthless, and like a loser. About how if you are poor, society tells you every day that you are not worth keeping alive, because clearly it must be your fault that you are poor so you deserve the consequences that come with it, even if they mean death.
For me it all started really with my disabilities. Before that I was a typical broke student. Not rich, but not really poor. My bills were paid by my parents who also gave me a weekly allowance for groceries.
Budgeting meant deciding how much of that weekly allowance went for treats and how much for essentials. It meant making sure that my monthly bills didn’t go over a certain agreed upon amount per month. It meant looking for a job to supplement that income and help take some of the burden off of my parents. But ultimately, it meant that if I ever got in trouble, if I ever had an unexpected expense or that if something bad happened, I had a safety net to fall back on. I had my parents who would make sure I wouldn’t starve, or go homeless. Who, while letting me learn from my mistakes like maxing out my credit card (of course I have to pay that off myself), would also not let me become desperate.

When my health troubles started, so did more serious concerns about money. Early on the medication I was put on was a biologic: a new line of meds that modulate the immune system in order to help prevent the immune response that is causing you problems in the first place. Because biologics are new and in many cases, still being studied, they tend to be obscenely expensive.  At first, it was a hardship, but manageable. My parents were able to cover the expense, though my guilt over being reliant on them for support became even more intense. I became determined to work towards self-sufficiency.

For months, my parents and I tried to get on Trillium: a provincial prescription insurance that takes applicant’s financial information into consideration.  While we were approved, they decided to take my parent’s income into consideration and the deductible was so high as to make the coverage essentially non-existent.   This is a common occurrence. Despite the fact that my parents lived more than 8 hours away, it made no difference into their considerations.

When my Crohn’s kicked in, I was switched from biologic to biologic, finally ending up on Remicade. Had it stayed at that, the situation my family and I had going might have been able to continue. This was not the case however, as my Crohn’s refused to go into remission. I was getting better, but only in that I was no longer ending up in the hospital every two weeks. Instead, I was still sick, but was able to limit hospital admissions to twice a year. I was able to simply survive my flare until the next dose, and experience a brief window of seeming normality immediately after the infusion. My doctor decided that something more extreme had to be done to try and push my system into remission. I would have to go on a double dose of Remicade.

My first double dose however would be given before I could qualify for Trillium. With that in mind, I did something I had been hoping to avoid for a long period of time: I took out a student loan. More accurately, I took out a student line of credit. I used the money from the line of credit to pay for my next dose. I also used it to help pay expenses until I could find a job that would be able to cover everything: rent, groceries, everything. I was officially on my own. Months before this happened, my house had burned down and I had lost everything. I had little clothing, and not very much furniture. The insurance money had gone towards paying my next year’s tuition, as well putting down a down payment on a new apartment, and supplying me with a very limited wardrobe to replace what was lost.

I found a job that would help cover things. I was prepared to work hard. I wanted to keep this job until I was finished with school and could get my long term job/career. I knew it would be difficult, but I was prepared to apply myself and be the perfect employee. I saw myself on the path to middle class normalcy: a little difficulty in the beginning followed by relative comfort and security in a white collar/professional job. I didn’t want to be a millionaire or a CEO. I wanted to someday have a house and a car, to have a family, to have a job that I like, that makes me feel as though I am making a difference. I wanted to be able to occasionally go on a vacation, and to have fun with making my interesting recipes. I wanted to save for retirement. I wanted to occasionally be able to splurge on something knowing that while it might mean saving for a few months, it wouldn’t put my life, home, or security at risk. I still want/dream of all those things.

What I didn’t know was that that new job would send me on a path that would eventually spiral into disaster. It started out great. It was work I enjoyed: doing social media marketing, writing, with some occasional clerical work. There was variety, with me occasionally being asked to come up with a meal or event idea for my boss, doing some personal assistant work like filing papers with the court, etc. etc. A few months into my job however, trouble started brewing. My boss was considering a company move, and the hustle and bustle included a loss of her assistant dealing with the paperwork side of the business.  She looked for someone new, but eventually, the responsibilities fell to me. I didn’t mind since more work meant more hours and in turn more pay. Soon however, it was clear that the amount of work expected was beyond what was feasible. I was doing the work of a marketing assistant, a clerical assistant, and a personal assistant. Soon many days would end up with me working for ten to twelve hours straight. Frequently I would work through lunch, or miss it all together. I would come home exhausted, too tired to make dinner or do anything other than go straight to sleep. While I was doing the work of three people, my boss didn’t believe the work-load to equal any more than that of half a person. She became dissatisfied with my performance, convinced that I was too slow, or just too lazy. The stress of trying to maintain the long hours, the quality of performance, all the while increasing the speed at which I completed everything began to make itself felt.

I bought a car to help mitigate the fact that the bus commute was more than an hour long, and to take away the stress of not knowing whether I would have access to the company car at any given day. With the money I was making at the time, it was within our means and would also give me more opportunities to be even more productive.

I was constantly anxious. I would receive multiple texts a day, from the office, from my boss, from clients. At times I would be messaged late at night to perform some emergency task. My inbox was constantly flooded. I was falling behind in my work, which in turn made my employer punish me for unproductivity.  I was becoming sick more frequently, finding blood in my stool at an alarming rate. I was admitted for some time with pancreatitis. I began to need my medication more and more. I was constantly exhausted and felt wrung out and on the verge of meltdown. I started gaining weight due the stress and the unhealthy eating habits that became the norm of my life.

After buying the car, the unreasonable expectations, the anxiety, all came to a head when my boss gave me reason to believe that I would not receive my next paycheck. I spiralled into a state of anxiety so bad that I had to call in sick from work. I felt as though I couldn’t breathe. I looked back over what had been happening in the last few months and realized that I was in an abusive relationship with my boss. I was wound so tight with anxiety over that entire time that I became convinced that I would snap. I had a panic attack every time I heard the tone on my phone I had set as hers. I would jump whenever I heard that sound coming from someone else’s phone wondering what I had done wrong now.

I made a decision that despite all the hardships that would come from it, I still maintain was the right one. I quit. I knew that the decision was one I had to take.

I began to look for a new job right away. I went to various interviews. I was hoping that one of the other people at the company would hire me. I knew that many of the others there thought I was doing a good job. I went to interviews and finally I was offered a job. It was a bit different from what I had done in the past. This time I would be working as an office assistant in a trades industry. Things began spiraling further down almost immediately. The office was frequently dirty, with dust lining every surface. My bosses were constantly at each other’s throats. It was not uncommon for someone to slam doors, yell, or burst into tears. The whole office environment fed on drama, with everyone talking about everyone. It was a minefield of emotional stress.

My Crohn’s rebelled. Over the next several months I existed in constant pain outside of what I had learned to tolerate. I was frequently ill. Mornings would involve me struggling to find the energy to get up and get to work. I had to call in sick frequently since the dirty environment did not agree with my immunosuppressed status.  My promised raise fell through when my bosses became upset with my frequent illness.

I started going to the washroom more frequently as my flare up worsened. This was remarked upon by my employers, who wondered whether such frequent trips were necessary. Though I was working significantly fewer hours than I had previously, my exhaustion worsened. After the previous work environment had set off my anxiety, this new emotionally volatile environment became too much to bear. After months of hoping everything would settle down, after weeks of looking for a new job on the side, in the hopes that I could find a new environment, sharp stabbing pains in my stomach landed me in the hospital.

The doctor in the emergency room remarked that I was flaring. I needed to take time off. She wrote me a doctor’s note telling me to stay away from work for the next week. My regular GI followed up with his own concerns about the state of my health in the last few months. It was becoming obvious that I could not keep this up much longer without serious long term consequences to my health. I needed to stop.
I applied for sickness benefits and left my work. I needed to re-stabilize in order to have any hope of getting better and someday getting back to that goal of normalcy.

Applying for sickness benefits is a difficult process on its own. It takes weeks to get approval and in the meantime you exist in a state of moneyless limbo. It is a terrifying state. You are not working and have no money coming in, but you have to wait weeks to find out if you are even approved. You worry that at the end of that time, they will decide not to cover you and that you will be without the funds you need to pay rent, your bills, or buy groceries. You have no way of knowing which way the decision will go. Many people who deserve to be on sick leave don’t get it, while others are approved. How can you tell which you will be until it is too late?

I spend Christmas in this state of limbo, relying on the kindness of friends who donated to my blog. My parents as well sent me some money for Christmas, which helped make sure I was able to eat.
Finally, I got my approval. For the next few months I was taken care of as I worked on getting back to form. Still, in the back of my mind was another fear. What would I do once the coverage period ran out? How long would it take me to find a new job, and would I even be able to work again? I applied at this time for ODSP: Ontario Disability Support Payments. With disability, I wouldn’t have to worry if I continued to be unable to work.

The frequent pain and illness were beginning to take their toll.

All around me people were warning me that getting approved for disability is close to impossible. I did my best to look for sources of income that would work with my disabilities. I found a job briefly, but soon my anxiety and my disability got in the way and I was fired. Finally this past month, I made a try for welfare.  My application for disability was denied in the first rounds. I will be fighting appeals to try and get myself approved as being genuinely disabled. In the meantime however, I struggle with finding a way to survive.
In the meantime, the stress works its negative effects on my health, prolonging my incapacity.

While struggling to find solution to our monetary woes, there is also a fear in the prospect of making too much money. At what point will trillium decide that I can afford to pay $9000 every six weeks? If I manage to get disability and then go back to work, at what point will they decide that I make enough that they no longer have to help provide me with insurance for things like eye care and dental. Health insurance in general is out of the question thanks to my “pre-existing” conditions.

But still that point is far away.

Instead, I have to wait on all that until support runs out, to start working on pulling myself out of this hole, in essence prolonging the length of time I spend in financial insecurity.

I am not the only one in this situation. This is the harsh reality of living with a disability. Pain, anxiety, disability guilt, illness, and exhaustion all stand as barriers to being able to work.

Even if you are able to work, many employers are not interested in taking the risk of hiring you, lest they be on the hook for covering any long term hospital stays or disabilities. In truth it is not completely unreasonable when you consider that, at least in my case, a normal year could require a minimum of 40 sick days. Others find excuses to fire you so that they don’t have to deal with their responsibilities towards you.

If you belong to other identifiable minorities, the difficulties in finding suitable work can be even more intense. There is a societal attitude that pains people struggling with disabilities as being incompetent. If you are a woman, such a disability can further disadvantage you in the eyes of employers. If you are a woman raising a child, then most employers are really unwilling to take the risk. If you are a person of colour, you have to struggle against stereotypes and racially motivated assumptions about the source of your disability.

Many of us live on the brink, juggling our desperate financial situations with a desperate search for ways to treat our conditions. We go to doctor’s appointments, take harsh medications, spend endless hours in waiting rooms, and getting tests done. Sometimes we end up in the hospital, hooked up to drugs and IVs that only take the edge off of our sickness or pain, to maintain us until they can try the next potential treatment or the next referral.

The internet has provided a means of requesting support from our friends and/or followers, whether for occasional extraneous expenses like moving, or for more regular help in paying your bills while you wait for more permanent means of supporting yourself. Even aid like welfare does not actually provide valid means of support. The government has expectations that you be able to find shelter, buy food, and manage all of your other expenses for less than $600 a month, in a city where most bachelor apartments start at that amount.
When we try to make use of the funding support that the internet allows us we are either shamed by friends and family who insist that we should be too embarrassed to ask for the basic means to be able to survive, or we are accused of being scam artists. I have seen this repeated over and over again. In the past on my blog I have been accused of running a scam when sharing similar stories of desperation from other struggling people with chronic illnesses and impairments. When recently Angie the Anti Theist shared her own story of desperation which motivated others to start a fundraiser on her behalf, commenters have used her frequent requests for money as proof of some sort of incompetence or abuse of people’s generosity. These types of complaints only add to the weight of anxiety and burden already caused by our situation, while ignoring the circumstances that make these frequent requests necessary.

These same people who complain about the frequency of our need to share our stories, or our attempts to discuss how the systems is unfairly set against us. We are accused of just whining or not thinking positive enough. We are told that all we need is a healthy diet, or exercise, which ignores those of us who either already do or are unable to due to poverty or pain. Pointing that out of course just means that we are useless pawns of pharmaceutical companies. We are told that talking about our stories just decreases our likelihood of getting a job.

We are called lazy, we are called incompetent, we are called moochers and drug addicts, and I for one am sick of it.

What it Really Means To Be Poor and Disabled

Where Ableism and Fat Shaming Collide

Earlier SpasticFantastic posted a great article calling out Takei on sharing an ableist joke for which he later apologized. The joke centered around a picture of a woman standing from a wheelchair, with the caption “A miracle has occurred in the alcohol isle”. SpasticFantastic did a great takedown of the problems associated with the image including the idea that lots of folk use mobility devices who don’t have complete paralysis, who may only use it occasionally, etc.

I am one of those people. My arthritis on most days manifests as stiffness and soreness, but otherwise doesn’t impact my ability to walk (I say walk and not mobility because I do have hindered mobility always). Other days however, every step sends a shockwave of pain up my body. My hip feels like it is dislocating every time it bends. On those days, at the very least I need a cane to maneuver and at worst I require a wheelchair.

My decision about whether or not to use an accessibility device should depend only on whether or not I need to at that moment and nothing else. Unfortunately, because I am also a fat girl, the decision also has to take into account how much fat shaming I am prepared to handle that day.

I’ve written about my anxieties surrounding my weight, and the way in which fat-shaming overlaps with my sexual assault. My weight has also been intimately involved with my disability. For many years, my condition was ignored on the pretext that it was caused by weight. The fact that symptoms persisted even at my lowest weights never seemed to register. Later when my various illnesses manifested themselves fully, I was left in a difficult position when it comes to managing my weight.

One of the medications I take frequently is a steroid which causes weight gain. My joint damage rules out any intensive forms of exercise, and my Crohn’s rather than my weight dictates what I eat. That said, despite my weight and my disabilities, I have healthy habits. Most of my food is made from scratch and uses little sugar or fat. I eat a healthy diverse diet. But that doesn’t matter ultimately because fat-shaming isn’t actually about health the way those who engage in it claim. It is about feeling superior to someone else and reminding women in particular that their bodies are public property.

Whenever I take steps to accommodate my disability, I find that I have to fight hard to assert my right to do so in the face of public scrutiny and judgement. I hear the snide comments and mocking laughter, I can see the smirks and not-so-hidden looks of disgust when I have to take the elevator one floor up. It doesn’t matter that stairs are painful for me, because obviously I am just being a lazy fat girl. The judgement makes me feel as though I have to perform or rather exaggerate my disability in order to get approval. This might mean highlighting my limp, or making obvious pain faces while rubbing my hands across my lower back. I have to put on an act in order to be granted approval for self-care.

The need to do this is encouraged by a social perception that bodies are public property and that society has the right in that case to grant my disability legitimacy. They, without any information about my pain levels, my daily struggle, get to decide on appearance alone whether or not I am “really disabled”.

Among these people are the folk who believe that my disability must be the result of my weight. The people who think that maybe I wouldn’t be so fat if I just walked instead of using a wheelchair at the grocery store. The idea that I am fat because I cannot walk never seems to enter their minds as a possibility.

And so knowing these judgements are being made about me every time I go out, every decision about whether or not to take advantage of mobility devices is painted with the difficult decision: which disability is more pressing today: my physical one or my mental one. And that is a choice no one should have to make.

Where Ableism and Fat Shaming Collide