Author: Ania Onion Bula

Author of Young, Sick, and Invisible: a Skeptics Journey with Chronic Illness.

What’s the Difference Between Eugenics and Pro-Choice

A lot of people can’t really parse the difference between being pro-choice and supporting eugenics. If choice is choice, what does it matter if people choose to abort children with disabilities specifically? Doesn’t it make sense that not everyone is capable and able to care for a child with a disability? Aren’t we taking away a person’s right to choose by saying that making that decision on the basis of disability is wrong?

It can be confusing and difficult to deconstruct, until we realize that when we are discussing eugenics and why it is dangerous, we are not discussing whether or not a person has a right to choose to end a pregnancy, but discussing the bigoted ideas that may be the reason for the decision.

Pro-choice activists can instinctively understand for example why abortion on the basis of sex or race would be wrong, while not seeing that assertion as invalidating a person’s right to choose. So why do we have this difficulty with disability?

Because socially we see disability as a bad thing, so much so that we have a tendency to see disabled people as not being fully human. This may seem like an extreme representation of the opinion until you realize that there are still arguments over whether people with certain disabilities have consciousness, are able to experience pain, etc. That treatments considered torture against abled people such as ABA and conversion therapy (not to mention bleach enemas) are not only still allowed for treatment of certain disabilities, but outright fucking encouraged by charities that claim to speak for these disabilities. That the murder of disabled children is often excused and almost never results in jail time.

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The Little Sewing-box Star

little plastic red starWhen I was a little girl, I was playing with my mother’s sewing box looking for something pretty. I found this little button or piece of a pendant or something in the shape of a small five pointed red star. At the time I loved the colour red, and I loved star shapes, so I took some thread and turned it into a necklace.

When my father saw it he froze solid. For a few moments he just stared at me, then told me with excessive calm to take it off. Shocked at seeing my father like that, the way his face paled, the way his eyes looked like someone had just stuck their hands directly into his chest and squeezed his heart, made me take it off and put the thing back in the box.

Later my mom told me that the star was a symbol of bad things that had happened to them in Poland before they came to Canada. That it brought back bad memories for them.

It was innocence only, and my father knew that. He didn’t scream, he didn’t curse or yell or threaten. He didn’t even explain. But that star disappeared.

Years later, I learned about Stalin and Soviet Russia and the Communist takeover of Poland. Over the years I learned about solidarity and bit by bit my father’s involvement with it. I learned that my father was blacklisted. I learned that my parents as newlyweds, were separated for 6 months while my father got out of the country and they worked to bring my mother down as well. (more…)

The Cost of My Disability

Once again I am left in a position of asking for help to cover what is an essential medication for the management of my symptoms. As many of you have doubtless figured out by now, I use medical marijuana to treat my Crohn’s disease.

The medication acts on two fronts. The first is symptoms management where it relieves the severe pain and nausea caused by my conditions. The second is by making the other medication I am on, more effective.

I’ve mentioned time and time again that it can be expensive, but for once, I am going to share specifics.

Every once in a while, someone will complain about the fact that I ask for monetary assistance. I get advice on how to “save money” which often ignores the reality of my situation.

So just how much does my medication cost?

Medical Marijuana ranges from $6 per gram to $12 per gram. Thanks to compassionate pricing, I get a 20% discount with my dispensary. I do my best to buy the cheap strains as much as possible, but often those strains are not the ones that work for my conditions.

More frequently I end up needing the strains that cost me $7.60 per gram.

My prescription is 2 grams per day.

That adds up to at least $465 in an average 30 day month. If the cheaper strains are not available, that total can go up to $600 per month. The choice literally becomes, do I buy groceries or do I buy my meds. Frequently what happens is I use the money we used to pay down our debt on the credit cards, to then purchase my medication, in effect never actually making any improvement in the debt situation. The remainder comes from the overdraft protection, which in turn can cost us up to $5 for each day that the account in overdrawn.

Some months it is a matter of deciding which is more important, my meds or groceries.

Medical Marijuana has not been covered by Trillium or ODSP since the rules surrounding prescriptions were changed by Harper’s government. It is also not covered by any other insurance, even if I wasn’t prevented from accessing other forms of insurance due to my “pre-existing conditions”. This despite the fact that it is a known treatment for chronic pain, chronic nausea, and a variety of conditions.

Every month means an overwhelming amount of anxiety as I try desperately to come up with some way to get extra money, so that maybe just this once, we don’t overdraw and can start the month without being in the red. Overdraft protection is supposed to be a failsafe, not a line of credit. The anxiety of course makes my conditions worse, increasing pain, increasing nausea, increasing blood loss, to the point where medication becomes even more of a priority.

It’s a desperate circle, and one I hope someday to be able to escape. But in the meantime, I ask for help.

 

 

Quickie Rant: Hey Actually, That’s Ableist

Since getting involved with atheist activism, which was my first introduction to online social justice circles, I have seen people make an effort to drop racism language, cissexist language, sexist language, etc. from their vocabularies. Yes not all and not nearly enough, but still there was a visible segment of the community that made this effort.

The same cannot be said for the effort people put in to remove ableist vocabulary from their language. Sure some of the big ones like R*t*rd that many of us have known since childhood was a slur, but st*pid, Id*ot, Cr*t*n, M*r*n, l*me, Cr*zy, for those I haven’t seen as much effort, even from people who claim to care. It’s disheartening.

Every day I scroll through my newsfeed and I’m bombarded by these words from people who are my friends, who claim to care about me and people like me.

Do you really think we don’t notice?

Many of us are just too exhausted to have the same argument again and again. When many of us struggle to survive in a world that in some cases is actively trying to kill us, often through neglect (think flashing lights, they are fucking everywhere!!), it can feel like too much to tell yet another person: “Hey actually that’s ableist.”

 

Open Letter to Prime Minister Trudeau and Premier Wynne: Legalize Patients

To the Right Honourable Prime Minister Justin Trudeau and to the Honourable Premier Kathleen Wynne:

My name is Ania Bula, I am a citizen of Canada living in Ottawa, and currently a recipient of Ontario Disability Support Payments (ODSP). I am also a registered medical marijuana patient.

I receive this prescription to help me manage the symptoms of moderate-severe Crohn’s disease. As a quick background: Crohn’s Disease is an autoimmune condition that affects my digestive system. Symptoms can take place anywhere from the mouth down to the anus. This condition causes my digestive system to become inflamed and swollen, which in turn causes it to be very delicate. During flares, the inflammation can be so bad that the lightest pressure causes the membranes to tear and ulcerate, causing blood loss. The inflammation can also cause blockages in my intestines that need to be operated, a loss of digestive ability leading to malnutrition, as well as causing severe pain, nausea, vomiting, and diarrhea. Needless to say, it is not a pleasant condition to have.

I have been treated for Crohn’s, in addition to other conditions, for close to a decade. The primary medication I receive is an immune suppressant by IV once every 6 weeks.

The prescription marijuana serves two purposes. The first is symptom management. Marijuana helps with pain and nausea control. Without it, many days are too painful for me to function appropriately. I cannot get out of bed, I cannot keep food down, I become malnourished and have to be admitted to hospital. Once there I am usually prescribe harsh steroids which, while helping minimize the flare, also causes damage to bones and joints already ravaged by this and other conditions.

Because I can take marijuana in ways other than through oral ingestion, it makes the pain treatment more effective. Frequently, the swelling in my intestines prevents more severe oral medications like dilaudid, Percocet, morphine, and others, not to work effectively. Moreover, the side effects of opiates can often mirror some of the same symptoms I am already dealing with like nausea.

I take small doses of marijuana throughout the day, which helps me get work done: either paid work like writing, or even just domestic chores like making dinner. For me, marijuana has been the thing that has helped the most when it comes to regaining some semblance of normalcy when it comes to quality of life. It has kept me out of the hospital on more than one occasion. It has helped me feel human again, when many of my conditions conspire to do the opposite.

In addition to symptom management however, marijuana also helps actually treat my condition. Studies have shown promising results when it comes to difficult cases such as mine. Many patients who have not responded to conventional therapies alone, have managed to go into remission when given the added treatment of marijuana.

Why am I telling you all this.

Recently, under the direction of Prime Minister Trudeau, the Canadian government has started the process towards legalization of cannabis. While this news makes me happy, there is a much more pressing issue facing patients that I believe could be addresses even before legalization can officially happen.

Medical Marijuana, ever since the new rules put forth by the Harper Government, is not covered by insurance. Not even that provided by ODSP.

The cost of marijuana is high. The standard dose of 1 gram per day can run you about $10 per day. For those of us with larger prescriptions, the associated cost is even higher. Often patients are forced to choose worse or less helpful strains in order to deal with the cost. My prescription can cost me up to $600 a month. As someone who lives on a fixed income from ODSP, that number is far beyond what I can reasonably afford. As a result I have had to go into debt to get my medication, borrow money from friends, ask strangers on the internet for monetary help, and sometimes make the decisions between groceries or my meds.

This is not a decision that should ever have to be faced by patients. Even if the mmj was only for symptom management, it would still be an essential part of my treatment. The increased stress surrounding the ability to get my medication also has negative side effects on my conditions itself, which are sensitive to anxiety and stress.

I am asking you to please help patients like me. To work to make our medicine a help and not an additional burden. Healthcare is, I believe, an integral Canadian value. We’ve built a national identity out of being the country that cares for its sick, and I am asking you to please continue that tradition. Help us get our meds covered. Help us not have to struggle to get treatment when already living on an extremely fixed income.

Sincerely,

Ania Bula

Writer of Young, Sick, and Invisible

Alexandania.com

THE VALUE OF FICTION

Growing up, my parents encouraged me to read. I have memories of my parents working with me through Polish workbooks. I have memories of my parents reading, and reading to me. One of my fondest memories is working my way through the Hobbit with my dad. He would read one page and I would read the other.

Years later, on very lucky evenings, my father would read from the tales of Sinbad the Sailor as our family sat around in rapt attention.

When we moved to Ontario, it was one of the hottest summers on record at the time. Our new home didn’t have air conditioning, which my elderly grandmother couldn’t handle very well. We would walk to the library just a short distance from our house. Gran would peruse through the small stock of Polish books, while I explored.

I think my real obsession with books started that summer.

As I got older, books became a lifeline. I didn’t have a lot of friends at school. I spend many recesses bored and lonely, until I discovered that I could bring my own books to read outside. When things got difficult to handle, I would escape to books. When I was exhausted from my busy schedule, I would relax by reading. When I was finished with school work ahead of the rest of the class, I could read secretly under my desk.

Eventually, the same people who encouraged me to read voraciously started despairing of my choice of literature. I was encouraged to read Shakespeare, Joyce, Homer, basically anything deemed to be “the classics”. The fantasy I was reading was called worthless by people who themselves enjoyed reading.

What benefit is there to stories that are made up, which take place in a purely imaginary world? On the surface fiction might appear to be nothing more than entertainment. After all, how can stories that have no facts be of any use?

It’s never been difficult for me to see the benefits of reading even the most fantastical of stories. Books of seemingly little value have had varied essential roles in my life.

Some were very practical.

As a young girl growing up in an immigrant family and community, where everyone around me spoke a language different than that of the country we lived in, books were essential in helping me learn to speak English.  When my parents enrolled me in a French school, books helped me develop enough language skills in English to communicate with people in the English city I lived in.

Some roles were more therapeutic in nature.

It helped alleviate loneliness, and later, helped me maintain some sense of balance and composure when I was overwhelmed. They gave me a place to escape to mentally when I couldn’t escape physically. They kept me grounded until I could change my circumstances. Books helped me maintain hope that someday I would feel less alone, that I would find “my people”. It would just have to wait till I went out into the world, just like it often did for many heroes.

Eventually reading in itself became a way to meet people. What better way to start off a new friendship or relationship than bonding over stories that had a profound impact on your life. “What are you reading?” is a great ice breaker.

Reading helped me develop more social skills. I always had a hard time relating to my peers, but books provided me with social scripts for different situations. Stories helped me understand human nature and human psychology. Different books, different characters, different situations, they all provide different insights into the human psyche. You learn about the author through their voice, looking at exaggerated situations in a fantastical setting can help you recognize patterns and apply them to your own life.

Even in worlds with magic, there are often parallels to our own world we can relate to: corrupt politicians, family drama and misunderstandings, abusive dynamics and their possible consequences. Books teach us to think more about the shades of grey to help us see the whole picture and not just the black and white outlines. They teach us not to take things at face value and look below the surface. They teach can teach us that villains can be victims too, and that not all heroes are heroes. They teach us that everyone has worth.

Fantasy stories, those that featured magic and real gods and goddesses, are actually what made me start to question religion. Not because the stories were atheist, many of them were quite the opposite in fact, but rather because the stories encouraged critical thinking. In stories, the skeptic almost always ended the story by being “proved wrong to not have believed”. Interestingly enough however, a lot of the questions asked by those self-same characters informed my own questioning. Unlike in those stories, including those in the bible, the proof never came. In fact questions only seemed to spark more questions.

Teaching through narrative is a tradition whose origin is lost in the annals of history. The mythology of religions is a prime example of that, where magical creatures are used to gain some understanding of the world around us. In many religious texts, the prophet or savior teaches using parables or stories. Regardless of their veracity, they served as instruction.

Many cultures feature an oral tradition of sharing stories

Stories allow us to demonstrate difficult concepts, in a way that is easier to grasp. Take the Hunger Games and the ways many people have begun viewing current events through the lens of this trilogy to notice the same oppressive patterns being repeated in our own societies. Stories allow us to present the realities of privilege and oppression in a way that generates less defensiveness but still encourages the reader to draw those parallels.

Stories are a force for social change and our society knows this. Why else have totalitarian governments and organizations banned books throughout the years?

Books like Shadowshaper, where author Daniel Jose Older weaves discussions and examples of racism, sexism, gentrifications, seamlessly into a compelling urban fantasy.

Books like 1984 that warn us of the problems of sanctioned government spying for the sake of “security”.

Books like Harry Potter that discuss the importance of combating evil and the pervasiveness of xenophobia.

Reading is also what started me writing. So often I would find myself reimagining a story and modifying a character, or some part of a story would set my imagination soaring. Sometimes, I was out of new stories or told to take a break from reading. When that happened, I entertained myself by writing me own.

Writing fiction helped me explore facets of my own personality and identity in a safe way. Writing a bisexual character helped me discover my own queerness. Writing about gender non-conforming heroines helped me process how I experience my own gender. In the same way that stories featuring characters with similar struggles also helped me work through those issues.

Fiction might be nominally made up stories, but they contain a different sort a truth. One which is less about when things happened, but rather about why they may have happened and how.

Resolutions and My Mother’s Bike

For 2016, I am hoping to spend more of my time writing. I am particularly interested in working on and even finishing some various fiction projects.  I want to write more stories, both short and long, produce more blogposts, and generally get in the habit of writing a lot every day. Writing is like a muscle, it needs exercise.

Among these projects are:

1. Hunting Blackbirds: the first book in a series set in a world where people are divided into three categories and which one you belong to determines how human you are. It explores issues of racism, ableism, sexism and oppression. Total written: 46, 382

  1. The Tsarina and the Wizard: a retelling of a Slavic/Ukrainian myth about a beautiful Tsarina imprisoned by a heartless wizard. Explores queer themes, and gender bends rolls. Total Written: 687
  2. Cassandra Prophetess of Troy: a retelling of the story of Cassandra that plays with the idea of what prophecy is and what it means not to be believed.
  3. Beauty and the Beast: What if beauty was the beast? And what if there is more to the story than we really know.
  4. Book 2 of Hunting Blackbirds: Where I explore what happens after the hunt.

One of the best gifts I received this Christmas is from my sister. It is a writing prompt book make up of 642 things to write about. I plan on working my way through the book this year, working on at least one prompt a day. Some of them probably won’t generate much, some might produce stories, but some might end up as blog posts. To that effect I start with my first one, written before midnight, because why put off something good.

Write about something that was stolen:

I went to a high school that was about one and a half km from home. Deemed close enough to walk, and it was. I would walk to school every morning and walk back in the evening. Sometimes, if it was raining, or particularly bad weather, or I was running late, my parents would give me a ride to school. I didn’t particularly like walking, especially as my book bag got heavier and heavier. My joints would ache all the time, and whenever I brought it up the answer was always the same. I was out of shape I needed to lose weight. Except even when I was going to the gym regularly, I still found I had the same problem. Back problems ran in my family, so I didn’t understand why it was so impossible that there was something really wrong with mine.

Finally I came up with a solution that would work for me. My mother had an old Raleigh bike that she had had for I think something like a decade. It had come with us from Saskatoon. They had gotten me a great bike for my birthday, but were worried about it getting stolen, so they told me to take the old bike. I loved that thing. It spelled freedom for me in so many ways. Because I could rest my backpack on the seat, my back didn’t hurt as much. Moreover, because I could ride much faster than I could walk, it gave me more time to myself. I could take the long way home and have a few moments when I didn’t have to face anyone else.

I didn’t have to meet expectations, I didn’t have to perform, I could just be me alone, riding my bike. I don’t know how many stories and fantasies I played out in my mind during those rides. The benefit of the bike was so great, that even when I walked with friends, I would still bring the bike with me.

While at school, I would lock up the bike next to the cafeteria door. The lock I had wasn’t great. Sometimes it would come undone for no reason, even when I was sure I had locked it. But still, I was lucky. Even when it unlocked, it was ok. I would lock the bike next to the cafeteria, except of rare occasions when something kept me from it. A cluster of wasps that made it impossible for me to lock it there, or perhaps too many other students were there with their bikes. When that happened, the only chain-link that would work for a lock was closer to the street.

It was on one of these occasions that my freedom was stolen from me. The lock had come undone and someone took advantage of the opportunity. My beautiful red and white bike, my mother’s Raleigh, was stolen. And I was devastated.

Now years later, I don’t have a bike. I can’t ride the same way I used to. The damage to my hip is extensive enough that I would need a custom bike to make sure I didn’t injure myself. Now more than ever though, I miss that mobility. I find it harder to move more and more. The aches in my joints, not as bad as when I had my real problem, are still becoming more pronounced. I should say something to my doctors, but I’m afraid, because this time I know I’m fat. But what can I do? I go swimming twice a week as much as I can. I even have a swim buddy to stay accountable. My energy levels are so depleted between the depression, the constant anxiety over money, the increase in pain over the last several months.

I’ve started using the motorized carts at the stores. I feel guilty every time I do. I feel like I am failing somehow, like it is the ultimate proof that I’m a lazy fat-ass. But I do it, because the alternative is that I come home so depleted, that my whole day is eaten up by one errand. I can’t afford that.

I wish sometimes that I could have one of those scooters at home. Then I could spend more time, exploring my neighbourhood. Maybe it would be easier to take the dogs outside more regularly. Explore the city a bit more. I can’t afford it though, and I’m scared to ask my doctor about it, because I don’t want to hear again about how all my problems are just caused by my weight. And so, sometimes I dream of my mother’s bike.

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