Disability

Children and Disability

Ever since I turned 27, the thought of children has been on my mind. At 28, I am now a year older than my mother was when she had me. I always thought that my life would go a certain way. I would get my degree, get married, start a career, and have a baby. All of this was supposed to happen before I was 30.

Then I got sick, and one by one those dreams went up in flame.

I couldn’t go to medical school. Not only that, but I might even be able to manage a regular job let alone a career.

I got a degree, but unlike I expected my whole life, I am graduating with a bachelor with no idea of when or if I will ever be able to get more.

Some things changed, but not for the worse, just became different. Instead of a husband, I have a wife. The important part of that: the love, the support, the companionship remains the same. We live in Canada for now, which mean marriage for us is possible.

And then there are children. (more…)

Robbing Peter to Pay Paul

Growing up I used to hear this expression a lot from my singing teacher. It usually meant that I was doing something with my throat or voice which, while sounding good at the moment, could do long term damage to my vocal cords. I’ve been thinking about this expression a lot lately.

Ever since it came up during a discussion with friends. I was explaining how some of my medication I seemed to take in order to deal with the side effects of other medications. The conversation turned into a discussion of side effects and I mentioned how almost all of mine have increased risk of cancer listed. I joked that the meds I were taking risked me dying a slow and painful death, however I take them to avoid dying a slow and painful death now.

I joked that I’m robbing Peter to pay Paul. (more…)

Interview for Bi Any Means

I sat down with Trav Mamone of Bi Any Means to discuss my book, my new vlog, disability activism, atheism, and more. You should take a listen if you get the chance.

Listening through the podcast I realized that I accidentally used  an expression I’ve been trying to eliminate from my vocabulary because of it’s ableist implications. A good reminder that even people who care about these issues make mistakes and it is up to us to make amends when we do. To those who were hurt, I apologize and endeavor to do better in the future. Mea Culpa. I’m sorry.

Teal Haired Ania Cartoon blushing and looking apologetic

I’m sorry

As such please note: CN for use of Insane as a pejorative.

Listen to the Podcast Here

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.

Our Concerns Won’t Be Flushed Away

Content Warning: If you have a problem with discussions and descriptions of bodily functions, this post is not for you. you have been warned.

I’ve recently joined reddit, and have spent some time on the r/crohnsdisease. Among one of the articles was this one about a bathroom bill that didn’t pass.
The bill would have made it required that businesses allow Crohn’s and other IBD patients access to washrooms, even those that are for employees only. The bill didn’t pass and this author takes this opportunity to mock the idea of its existence and follow it up with an anecdote about how a woman tricked a business into using the restroom in order to steal something.
In the author’s mind, this anecdote is proof enough that the bill was useless and would not benefit anyone. The author “sympathizes” with people with intestinal and digestive disorders, and recommends compassion on the part of the businesses, but doesn’t see the need for such a bill.
For people without these disorders, crohn’s (which I shall now unfairly use to represent all IBDs) doesn’t seem like such a big deal. I’ve even had people quip that everyone gets stomach aches and that loose bowels really aren’t a big deal. When these people imagine what it must be like, most have nothing to compare it to other than that slight feeling of urgency you get when you’ve held it for too long.

I am about to share something very personal. The feeling of urgency when you have a flare up isn’t like that feeling of “Ooo I really have to go” but is more like “I need a bathroom right  stat fucking now!!!” With Crohn’s you don’t always get a lot of warning before the need to go to the bathroom is completely overwhelming. You have maybe 5 minutes to find a washroom. If you don’t get one in time, too bad. You have no control. Your body is your enemy as you do what you can to try and save yourself from embarrassment.

When I was first diagnosed, the actual bathroom aspects of the disease were not the worst. The constant nausea that never went away was. I began vomiting in public so often, that I started telling people I have morning sickness to avoid the ackwardness that was explaining to someone what was going on.
I remember one situation in particular where I started crossing a street and had to run back so that I could safely fall on my knees and bring up my breakfast. It was a choice between keeping going and end up tying up traffic or getting hit by a car, or running back to safety. As I knelt there trying to discretely throw up behind a stone, a woman began panicking asking me if I needed an ambulance. The last thing I wanted was a scene, but this woman was among the first people to ever show concern and I couldn’t scoff at that. But how to explain to someone who is freaking out that this is a normal part of your life? That you have a disease that sometimes makes you throw up in public without any control? How do you then convince that woman that no, you don’t need a hospital? “I have morning sickness” I answered.
I also now have had the pleasure of vomiting udon noodles all over the department of National defense.  No it wasn’t a political statement, I just couldn’t help myself.
As I did research into this condition that I now knew I had, I found frequent recommendations suggesting you travel everywhere with an extra pair of underwear.
Eventually I figured out why. As my nausea came under control, I noticed the bathroom symptoms. I was lucky and managed to avoid an incident for quite some time. I was in school, and there are always plenty of washrooms on campus. This made my first “accident” that much more traumatic. You see, it happened during a midterm of a class I couldn’t stand. I was already feeling sick, when suddenly the urge hit. I asked for permission to go to the washroom, and ran to where the nearest one was. Unfortunately it was out of order. I ran from one to the next, but the university had decided to renovate all the washrooms in the building at the same time. I finally had to run to the building next door to find one. I didn’t make it. Just stop and think about that for a second. Think about being an adult and not being able to control your bowels. Imagine the embarrassment as you try and clean yourself up in the bathroom. Of praying no one notices as you try and wash your underwear in the sink so that you can put it in your bag. Of having to trudge back to class feeling unclean, wondering if everyone can smell it on you. Of having to go up to your teacher and explain that you are unable to finish writing the midterm. That fear of hoping he understands and doesn’t just fail you on the spot. The horror of having to take the bus back to your apartment so that you can shower. Or the choice of going to your boyfriend’s place, who lives within walking distance to the school to ask if you can use his shower and his laundry machine. Wondering if he will ever be able to look at you and think your sexy ever again, or if every future encounter will be tainted with the subtle odor of “unclean”.
I was lucky, my boyfriend is a wonderful man. He hugged me, wrapped me up in his robe so that I could go shower, and washed my clothes for me. When I got out, he spent the next couple hours cuddling me, and loaded up a funny movie to make me feel better. Not a lot of guys would have reacted that way. For many, the fear of dealing with someone with that kind of disability can be too much.
While that was the first time it wasn’t the last. One night, my apartment building has a 2am fire alarm. In the hustle of trying to pack up our dog and the roommate’s cat, I didn’t stop to use the washroom. When we reached downstairs, the urge hit. I went to the little mall that had the only businesses in the nearby area. The only place left open was a Tim Hortons. I begged the drive through to let me use the washroom. I pleaded, explaining that I had this condition and that it was an emergency. The answer was no. I had to stand around in my mess for over an hour, while I waited for the firemen to clear the building. By the time I managed to shower, my leg had developed a painful rash. It would have been a 5 minute inconvenience for the restaurant. I would even have bought something to make up for it. But they didn’t, and I suffered.

I am not unique in having had these experiences. Despite the high level of embarrassment and inconvenience, this isn’t even the worst part of this illness. The lack of control over your body is bad, but the pain, the nausea can be infinitely worse.

During the worst of my flares, I remember laying on the bathroom floor shivering because my body didn’t have enough energy to keep itself warm, and I didn’t have enough to stand up. I lay there because I knew that in just a few minutes I would be throwing up bile once more. I remember avoiding brushing my teeth for some time, because the motion had me leaning over the sink coughing up bile. I remember the pain of using mouthwash because my mouth was filled with canker sores. I remember spending hours at the hospital emergency room, waiting to get yet another IV with fluids, just to be sent home without an answer as to what was going on. This happened about once every two weeks. I remember the months of barely leaving the house, of napping constantly, because my energy just wasn’t there. I remember bending over in pain, as once again I was seized with excruciating pain. I remember forcing myself to eat, wondering if this time, I would manage to keep it down. Of lying perfectly still, trying hard to force my body to absorb the nutrients I had eaten. Those moments of stillness, I remember wondering if I would survive this. I remember wondering if the rest of my life would be spent not being able to eat or digest. Wondering how much weight I would have to lose before I was admitted permanently. All of this wasn’t constant. It was interspersed between brief moments of normalcy that made it seem at the same moment so much worse but also better than it was. It took a long time before I realized just how bad things were. In hindsight, I look at what was going on and wonder why I didn’t just give up?

Not everyone with Crohn’s feels comfortable talking about it. It can be difficult. What we go through is so personal, the details about what it is like can be so embarrassing, that it is not surprising that most of us would rather not talk about it. I need to talk about it. I need to because it is less painful than this author’s assumptions about what having Crohn’s is like. Because maybe if I talk about it, next time that Tim Hortons will open its doors and let me in. Because maybe someone reading this will take pity on someone else and give them access to the bathroom.
I am not alone out there. My experiences are not unique and they are not even rare or the worst of what people have gone through.
This author, rather than recommending compassion to others, should stop and find it in themselves first.

YSI Excerpt: Disability and Mental Health

When struggling with pain, constant fatigue, nausea, malnutrition, loneliness, and a variety of other symptoms, it is not hard to believe that it is common for people dealing with chronic illness and disability to be vulnerable to depression. Whether this is because at times everything becomes overwhelming, due to circumstances influenced or worsened by your condition, or because of deficiency in necessary vitamins and chemicals, it doesn’t ultimately matter. The result is the same: depression.

With all the concern about managing your apparently more serious chronic symptoms, it can be tempting to simply ignore the mental health concerns. It makes sense that you are depressed. Who wouldn’t be if they lived like you? You already have all these other drugs, do you really mean anti-depressants. It’s not like you are going to hurt yourself, you don’t have the energy. And even if you did, would anyone care? You would stop being a burden. No one would have to worry about you anymore. It would stop the pain…

Just like that the depression becomes severe and cause for concern. At the worst moments during a flare, you might be stuck indoors for long periods of time alone. You might be in a hospital bed, your only human interaction the occasional visitor and the nurses, not to mention the person who comes to take your blood every morning. Regardless of whether you see a lot of people or not, you are stuck in one place for a long time. Imagine having to spend your entire day in a small, somewhat uncomfortable bed.  The only time you get up is to go to the bathroom, and to do that you have to push an IV pole that is attached to your arm.

Even if you aren’t hospitalized, the exhaustion can create the same results at home. After a while it starts to drain you even further. Your life starts to stretch out before you, and endless miasma of pain and boredom. You don’t even have the energy to watch TV. You just want to lie in bed, and wish you could get up the energy to have a shower.

What can further complicate the situation is that symptoms of many chronic conditions and depression overlap: fatigue, difficulty falling asleep, lack of energy, pain, and so forth. It can be difficult to tell when you are dealing with one thing or another. Are you unable to get motivated because your Crohn’s kept you up all night, or because your depression is making it hard to care about anything? Is the exhaustion mental or physical? Is my joint pain a physical response to inflammation or to psychological pain? Moreover, sometimes physical pain can cause the psychological pain. It all intertwines until it is almost impossible to tell.

Despite the frequent connection between disabilities, illnesses, and anxiety/depressive disorders, the medical community still has a hard time understanding the correlation. Frequently depression, anxiety, or any psychological diagnosis is treated very negatively. Even if you have a documented disorder that you are getting treated for, a diagnosis of any psychological condition could mean a decrease in the quality of care. Suddenly, every trip to the doctor or ER becomes suspect. Some doctors will wonder if you are faking your symptoms in order to score drugs, while others will assume you are over reacting or confusing mental symptoms with physical ones. It creates a situation where there is an incentive for people with chronic conditions not to seek help for their related psychological conditions.

I have seen this manifest personally. The usual procedure when I come into the hospital is to be given an anti-nausea agent and pain meds. Regardless of whether they think I need to be admitted or not, the usual assumption is that if the pain is bad enough for me to feel the need to come in, then controlling the pain is a concern. On one such occasion, I noticed a slight change in how I was treated. Usually there is an effort to reduce my pain symptoms as quickly as possible. This time around, it seemed that there was a hesitancy to do anything about it. I was offered some anti-nausea medication, but not once was there even a mention of anything to do about the pain.

When the doctor came in to see me, the first questions were not about why I was there, but clarifications about my last visit to the hospital being labeled “psychiatric”. I was confused, having never come to the hospital for anything mental health related.  I wracked my brain for every time I had been to the hospital in the last few months: visit with my gastroenterologist, visit with my rheumatologist, weight management clinic…. Bingo. It seems that the clinic that my GI had sent me to to see about getting help in losing weight with the difficulty of Crohn’s and arthritis, registered as a psychiatric visit on my hospital file.  In combination with my medication for anxiety and ADHD, they has assumed that I had come in to be treated for something else. The pallor of having sought help for a mental health problem changed how they viewed my physical health. I never was offered anything for pain, and I was sent home without any satisfactory aid for what was wrong with me. For the first time I was given the answer that it was “just Crohn’s”. A condition that had such a profound impact on my life was suddenly seen as no big deal because of one tick on my chart that might suggest that I also had depression. That the Crohn’s might be the cause of the depression was never considered. That a person can have two things wrong with them and have them be equally valid and serious was never considered. No clearly, despite the fact that I had a documented condition, depression, anxiety, or any other form of mental health disorder had to mean that the pain was all in my head.

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.