Social Justice

Unpacking the Red Pill

I’m actually sort of upset that internet hate groups have managed to co-opt the matrix red pill analogy. It is actually a really good metaphor for social justice and the way that becoming aware of privilege and systemic injustice works.

It really is like suddenly opening your eyes and realizing that everything you thought you were seeing you were actually seeing incorrectly your whole life. It’s incredible. Where the analogy fails is by painting it as a single pill.

The truth is that becoming aware of social justice issues is really like swallowing a whole bunch of different red pills, each one exposing you to yet another level of interconnected systems of oppression. This is why we get some atheist activists, and other social justice activists, falling into this same trap over and over again of thinking that they couldn’t possibly be sexist, racist, transphobic, classist, etc. because they “already swallowed the red pill” so now they could see the whole truth.

There is also this idea that swallowing one red pill makes every additional one easier to see, but that’s not true. Sometimes you can swallow multiple red pills at ones at once. But the truth is that each one is painful to take. Each one produces its own side-effects, its own difficulties. Swallowing the red pill is never easy.

It’s not just one easily exposed system that once you see a part of, you essentially get an idea of the whole. It is more like a self-replicating computer virus that infects different system files. You can cut one out, but unless you get them all, it will just rebuild again.To really solve the problem, you have to root out every single individual corrupted system file. Otherwise, the program rebuilds itself, just using a different pathway, but ultimately yielding the same result.

Take the evolution of feminism throughout the years. Each wave of feminism exposed layers of patriarchal oppression, however, by failing to consider the interconnections of various issues and the level to which the system was self-replicating, rather than fixing the problem is shifted the scope of it. Such as when the response of women trying to prove that they were every bit as capable in “masculine” fields and tasks ended up reinforcing the gender binary. The focus was on showing that women can also do “masculine things” rather than on showing that the division of actions into an either or option was not based on an accurate social model of gender. The resulting surge in femmephobia reinforced a lot of harmful patriarchal concepts that are now that much more difficult to dismantle. It’s not that second-wave feminists went too far, it is that they didn’t go far enough. It failed to take into account how the system is also supported by race, by cis-centrism, by ableism. It failed to look at the matrix as a whole.

Imagine if the matrix actually existed as a series of levels. With every successive pill you see a little more of the matrix. But if you don’t realize there are more pills to take, you might be tempted to think you see the whole matrix. Agent Smith is counting on that, because as long as you believe you are outside the matrix, they can use the parts of the matrix you are still connected to to shift your perception of the world around you.  As long as you are still within levels of the matrix however, you continue to power the system.

If we take the premise of the matrix movie that human beings are being turned into a potato battery, becoming aware of different spheres of oppression is like discovering that your potato battery is charging other batteries and working to shut off those batteries so that your battery doesn’t die. Those are the first red pills you usually take.

The hard pills to take are those that reveal that even while you are struggling to unplug the connections that are causing other batteries to drain your charge, you are recharging your own battery from other people as well. These are the pills that make us choke, that stick in our throats. These are the ones that make us want to fight and reject what we are seeing, because more than anything the matrix relies on our denial that we could be harming people even if we have no intention to.

You didn’t know. The plugs were in your back and you couldn’t see them because you were in the matrix level whatever. But intentionally or not, you have been draining other people’s batteries. Whether you knew or not, you may have been the connection that added just that extra little drain needed to completely empty someone’s battery.

So now you have to make a decision, which do you pull out first?  The ones draining others or the ones draining you? Or do you try to pull them out at the same time? Do you leave others to try and pull out the ones draining them out themselves? Do you go back to pretending you never saw the ones in your back or deny that they’re there? Do you address some but not others? What makes you decide?

The choice you make is ultimately yours, but the one you make says something about you as a person.

My choice is striking a balance between pulling out both sides. I need to pull out my own because I can’t take out the system if my battery is completely dead. But I also need to work on pulling the ones that are charging me. Sometimes, when my battery is draining too fast, I need to take a break. I might need to focus on pulling out my own for a few moments, though I never forget about the ones in my back. Sometimes, I am being drained slow enough that I can forget about pulling out my own for some time in order to focus more on pulling out the ones that I benefit from. In fact, often when I am puling out my own, it is so that I have the surplus energy to spend more time pulling out the ones that charge me.

Everyone is interconnected into the system, but not everyone carries the same number of output and input energy. Some people only have maybe one or two output cabled, while being charged by several sources. Even when this happens, you might not be retaining a high charge, but that doesn’t change the fact that you are still draining others. The opposite extreme also exists with some people being almost completely output cables and none or almost no input cables.

The system is like a web and everyone is plugged into it.

It is essential that we all disconnect and break the system. When you have any system that depends on batteries basically sharing charge in a single continuous system, that leads to combustion. Just ask anyone who has had keys and batteries in their pocket, and ended up with burning pants because the two connecting created a single circuit.

The system is a path to destruction as long as it exists because either your battery gets completely drained or you combust. That’s ultimately why systems of oppression like patriarchy end up hurting even those they privilege.

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.

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.

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.