activism

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…)

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.

Don’t Make Me Pee In Your Fruitloops

It’s happening again.

Someone came up with a brilliant idea. Hey, why don’t we charge money for public toilets?

The reasoning is that by charging for bathrooms, the only people who will use them are people who actually have to go. Cut down on public sex, drug use, and raise money for the city all in one go!

Except?

Except this is just another example of how often the rights of the disabled are trampled over in the interest of “the greater good”.

What’s the big deal? It’s just a bathroom? If you can’t afford to use it, just wait till you get home?

Bathroom use is one of those interesting issues. On the surface we know that it effects everyone. One of the most recognized books in toilet training is literally called Everybody Poops. We don’t need to be socially convinced that people need access to washrooms. Where we make mistakes is in taking bathroom access for granted.

For the average person, if you need to use the bathroom, it is just a matter of finding one. You are able to devote a bit of time to looking for one, and if it takes a little while to find it, you are able to hold it in until you do. Chances are you have a restroom in your home and/or at work.

But some of us are not the average person. Some people are like me. (more…)

Where is Your Condemnation Now?

TW: For Racism

During the Ferguson protests, during the Baltimore uprisings, during countless demonstrations that took place because black children, black men, and black women, are being murdered, there were countless and endless condemnations by white people of the protestors as being too violent, too angry.

Last night, white people came to a Black Lives Matter demonstration for no other purpose then to commit violence. Their purpose wasn’t to raise awareness, to express anger and hurt over government sanctioned murders. No. They were there to kill people who had the nerve to protest being murdered. They were there because they don’t see PoC as being human beings, as being people. They shot five people.

When the police responded, their response included macing protestors after they had just been shot at.

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Your Transantagonism is also Ableist

Recently Ophelia Benson added to the TERFY hole she’s been digging by tearing into an abortion provider who chose to use inclusive language when discussing issues surrounding pregnancy and access. It’s an issue that comes up surprisingly often. The discussion around genitalia is so needlessly gendered, that people often fall into the trap of equating body parts with identity.

The equation of women with “having a uterus” or the ability to have children is obviously exclusionary to both trans men and trans women. Not everyone who can get pregnant is a woman and not every woman has the ability to get pregnant. It is also exclusionary to many of us with disabilities.

The social equation of women with having a uterus is extremely damaging to women who, for one reason or another, have lost their ovaries, or uterus. Many of them struggle with feelings of inadequacy or identity loss for this reason. Harmful concepts, like those established by patriarchy and outdated feminist concepts that reduce women to their genitalia, only make the struggle more difficult.

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Rant: $13 a Pill is Still Ridiculous

The internet has been alive in the last few days with regards to the hedge fund manager who raised the cost of a pill from $13.50 to several hundred. People were outraged, his email was made public, and the anger even received news attention. The public outcry was so great, that the businessman involved returned the price back to normal, or so it was recently reported.

The pill in question, was widely reported to be an HIV drug. People could understand that most people with HIV would never be able to afford such a dramatic increase. There was discussion and outrage over how many people would die as a direct result of this unfair price increase.

I’m glad the outrage happened, and I am glad that the discussion came up, but what surprises me is that in all the commentary, no one pointed out just how ridiculous the original cost of the pill already was. $13.50 a pill, for a pill that needs to be taken daily amounts to almost $5000 a year. That’s over $400 a month. What’s more, this medication isn’t even a treatment for HIV. Rather it is a prophylactic for some of the opportune infections suffered by people with compromised immune systems. The drugs that treat HIV can be even more expensive. There are people dying because of the costs NOW.

It’s not just HIV treatments either. My own medication Remicade, even in Canada, costs $1000 a vial. I take 10 vials every 6 weeks to treat my Crohn’s disease. That’s $10,000 every six weeks. I had to apply for special coverage for this medication from the government. A program called Trillium that gives prescription coverage to low income people. The problem is that they get to decide whether or not I get my medication. Because Remicade is still on Patent and being studied, there is a coordinator who has to have special forms filled out every year to evaluate whether or not the government will continue paying for it.

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Crack in the Womb

[Spoilers for the Season 1 finale of Steven Universe follow.]

The moment that sealed Steven Universe into richly-deserved fame and a place in future discussions of the evolution of pop culture was the 52nd episode, ”Jail Break.”  In addition to pointedly and thoroughly burnishing the show’s credentials as queer-inclusive and emotionally complex, it provided viewers with a beautifully-composed song-and-fight sequence, from the only one of the four main characters to have avoided a musical number until then:

The words of “Stronger Than You” are poetic and poignant, particularly these:

I am a conversation.

I am made

O-o-o-o-of

Lo-o-o-o-ove o-o-o-o-of

And it’s stronger than you.

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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.