ableism

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

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.

ABLEISM CHALLENGE

CN: For Ableist slurs.

I have a challenge for all of my blogger friends. I want you to try and go one month without using the list of words below. For one month, in your blog posts and public opinions, I want you to not use these words. I will explain why. I will give you a reason, and regardless of whether you agree with me or not, I want you to try. For me.

Why does this matter?

The truth is that the concerns of the disabled community are often pushed to the side or seen as less important. Just a year ago there was almost a network wide outrage over being called on the use of ableist sentiments and words.  It ended with one of the more dedicated and active disability and neurodiversity activists, who has actually created a lot of the accepted vocabulary of the neurodivergent movements, accused of being a troll. The concerns were ignored, a new network was launched, and little to no progress was made in improving the use of ableist language or sentiments in our community. The verdict was in. As one person famously put it: disability activism is not a real thing.

And then the whole thing was ignored. For most people it was just not enough of a big deal.

Every few months someone writes a post asking people to not use “crazy” as a pejorative, that gets summarily ignored.

And these things do matter. In the same way that racialized words perpetuate systemic racism, and the same way that racialized words can find themselves in the most seemingly benign words, ableism too is so prevalent as to be invisible.

The sad fact is that most ableist slurs are considered the soft swears, the use-instead-ofs. Want to insult someone in relatively polite company? Chances are you may reach for one of these as a stand-by. But words matter. Language shapes our perception and when we make disability an insult, when we make ability an insult, we are implying that there is something wrong with being that way. It adds to a system that treats people with disabilities as being less than human. In some cases people go so far as to imply that people with disabilities don’t have feelings or don’t feel pain. Moreover it creates a perceptions, a link between being disabled and being otherwise incompetent.

(more…)

Crime of Being Weird in Public

While we were at the DMV, a man was visibly stimming by chewing on his shirt, and readjusting it often. He was awkward and drew some attention and stares. He was also wearing an oversized shirt and shorts that made it look like he wasn’t wearing pants. The police were called.

He showed them the shorts he was wearing, but that wasn’t enough. They stayed with him while he was waiting to get his information. Throughout it all the police were drawing attention to themselves and him. Finally, tired of waiting, they got him bumped up. Then when he was done, loudly asked if anyone would give him a ride somewhere, then laughing when the people who were stuck waiting in line couldn’t.

When the police were first called to the scene, most people were pretty entertained by the idea of a man at the DMV not wearing pants. Was it a protest of no shoes, no shirt, no service? Did he just forget? Nothing was hanging out, he just didn’t seem to be wearing pants. When the joke was broken and the tiny shorts revealed, most felt that that should have been the end of it. It was funny, but it wasn’t criminal.

The cops continued presence, and the way that they kept drawing everyone’s attention, however, soon made everyone uncomfortable. It’s one thing to respond when there is the potential of inappropriate nudity, but when it turns out that that is not the case, the continued mockery is just plain cruelty. What we were witnessing was a man with a presumed mental illness and/or cognitive disability, who was being tormented for being different.

We thought that was the end of it, until we left an hour later and saw him walking with his big bag trying to get to a bus stop.

We pulled over hoping to give him a ride somewhere, upset with how the cops had treated them. Just as I got to him and asked him if I could drive him somewhere, two police cars showed up. I had been in the process of walking away because he had said he was ok, but when I saw the cops, I hesitated and waited.

They asked if I was with him. He looked at me pleadingly while saying yes, so I answered that we had been together at the DMV, leaving it just ambiguous enough in case I was pressed for information. The young one got on his case again about his pants, telling him to pull them down and mocking him for wearing such small shorts. Uncomfortable, the man asked me if I would drive him, but the young cop cut him off saying that “the nice young lady isn’t going to want someone like you in her car.”

I started saying that actually I had just offered him a ride, but they had moved on to grilling him about why he was using a “stolen” Walmart shopping cart to carry his bags, and generally being unpleasant. The man insisted that he just wanted to get to the bus stop and then he would sit down and no one would notice him. The older one finally intervened and let him go while taking the attention of the younger one away from him.

I once again offered him a ride where he was going so he wouldn’t have to deal with the cops again. He said it was ok. Concerned but respecting his boundaries, I waved goodbye. At this point the older cop started lecturing me about offering rides to “people like that”. Seriously pissed and annoyed at this point, I pointed out that his behaviour at the DMV and on the way suggested the potential of autism spectrum disorder (specifically the stimming, the difficulty processing in the face of aggression, etc) and that people with autism or someone with a mental health issue were more likely to be victims of violence than aggressors. I was safer offering a ride to him, than an abled man.

The cop looked displeased and pointed out that he had been attacked by the very same type of people who he was trying to protect and they were mentally ill. To which I retorted that that was probably because they had bad associations with people in authority. Finally, not wanting to make him decide to go after me I smiled and said I guess I was just too Canadian for my own good, nodded to him and went back to the car. In the time I was talking to the cops, the harassed gentleman made it to the bus stop, hopefully not to be harassed again.

I left feeling extremely uncomfortable. Rather than being helpful, such as potentially by offering the man a ride to his destination. Or by telling the dispatch simply to let people know that he was in fact wearing shorts, or even just providing him an additional police escort just to show people that they are aware of the situation. There were a myriad of options open to them to solve the issue. Instead they actively got in the way of someone else trying to be helpful, created a shaming environment and openly mocked the situation. They were provoking him and looking for a reason to arrest him for the crime of being weird in public.

If I hadn’t been there what would have happened? If he didn’t have someone there to help act as a shield and step in front when they moved aggressively towards him, would he have been provoked in such a way as to create the perception of an excuse to take him down?

What makes this even more perverse, is that these men weren’t bad cops. The older one, in his misguided way had tried to look out for me. He probably didn’t realize all the ways in which he was making the situation worse.

The younger one was simply arrogant. Confident in his perception that he was the “better man”. How much of that act might have even been macho showing off in front of the “female”. His actions were creating a dangerous situation. He was actively provoking this other man. He was looking for any excuse to harass him further.

This is the world that people with disabilities, and especially neurodivergent people grow up in. One where they are not who the police are protecting, but who they are protecting others from, even though violence is much more common in the other direction. A world where being weird is a crime.

Medical Marijuana 101

I used to be terrified of cannabis. When I was in high school, I was chosen to be our schools representative at the regional anti-drug advocacy seminar. I was terrified of drugs. I was convinced that if I ever tried even a single puff, that I would spiral into the depths of addiction and end up on the streets looking for another fix. This is what we were taught through the anti-drug commercials, the talks at school and so forth.

When I left the sheltered community I lived in for university, the reality seemed quite different than what I was taught. I saw responsible and intelligent individuals indulging from time to time without any negative consequence. The more I heard about marijuana from people how had used in the past, the more I came across studies, and the more I witnessed, I realized that what I had been taught was wrong. Marijuana wasn’t some scary devil’s weed.

Although intellectually I knew that what I had been taught was wrong, I still feared touching the stuff. It just wasn’t my thing. And that’s perfectly ok.

I remember the first time I tried it. I was 25 years old, and I had been flaring for weeks. Every trip to the bathroom ended with me in tears. I felt like I had a rusty knitting needle sticking through my colon. I hadn’t really eaten in several days, terrified of the pain it brought. My roommate at the time was a stoner. Strangely, knowing her made me a bit more afraid of marijuana rather than less. She had told me more than once that her cousin with Crohn’s used it to help her with the pain. By this point I was desperate but still worried. I was allergic to smoke! Would it really work? Was I just setting myself up for some tragic result?

So I did what I usually do when questions such as this come up, I went to the google. I browsed several scholarly sites, and what I found reassured me. A lot of studies out of the Netherlands showed a link between marijuana use and pain reduction in Crohn’s patients. There was another site that showed the arguments for and against. The argument against boiled down to “it probably works but we don’t know because we haven’t studied it enough”.

I decided to brave it.

To understand how I felt, you would have to have been through extreme pain that lasted a long time, only to suddenly have it disappear.  You would have to have been hungry and unable to eat, and suddenly being able to enjoy food again. It was like having a sudden vacation in the midst of all this pain.

It was several months before I tried it again.

It is hard to explain what it is like to experience pain every single day. Energy becomes a precious resource, like water in the desert, and like water it is rare and needs to be guarded carefully.

There is a lot of misinformation surrounding medical marijuana. On the one hand you have peddlers of misinformation making it out that marijuana is the very worst of drugs, creating rumours about how stoned people commit acts of violence. On the other hand you have the people elevating it to the status of panacea.

As a user of medical marijuana who has experienced both sides of the coin (the fear and the treatment), I thought it would help demystify it by answering the most common questions I see and explaining about what my use looks like.

Why do you take it?

Cannabis works very well on a variety of symptoms. It is known for its pain control abilities, however, it can also help with nausea and relaxation. Different strains can also help with other symptoms, including anxiety, depression, and even certain types of focus problems.  There a variety of different conditions that benefit from different effects.

In my case I use it to control the chronic pain and nausea associated with Crohn’s. It helps stimulate my appetite on the days when I am having a hard time eating. It helps my muscles relax which in turn reduces arthritis pain. I have had prescription painkillers and anti-emetics, but when my Crohn’s is flaring I have a hard time digesting pills. Oral medications don’t work for me. They either don’t work at all, or wear off long before I can take my next dose. A lot of pain killers also cause elevated nausea.

Marijuana on the other hand provides pain relief without involving my digestive system, without provoking nausea, and leaving me a lot more clearheaded than pain killers do.

Are you afraid of getting addicted?

A lot of stoners will immediately start talking at this point about how marijuana is not addictive. There are conflicting studies on the matter, however, what is known is that marijuana is safe. With the conflictive information, it can be difficult to know what’s what.

There are numerous studies that suggest that marijuana is not chemically addictive.  So why the confusion?

The confusion comes from the matter of tolerance. Once of the markers of addiction is building a tolerance to the medication and requiring a higher dose to achieve the same effect. Consistent [read daily] use of marijuana can lead to an increased tolerance over time, which can lead to greater use. This would suggest that it is addictive.

However, if you talk to chronic users, whether medical or otherwise, they will tell you that all it takes to reset the tolerance is to skip a day here and there. In fact you can rid your system of marijuana in just four days. Withdrawal symptoms are mostly not present.

So if it is not chemically addictive, then what else is there. There is some suggestion that like many other activities that lead to feeling good, sex, video games, Facebook, it can be psychologically addictive. This means that people can begin to seek the sensation.

When all is said and done marijuana is one of the least addictive painkillers available, and one with the fewest side effects.

But is the pain really that bad? Pain is natural! You don’t look in pain.

Pain may be natural, but that doesn’t make it good. Pain and inflammation have more long term side effects than marijuana. Pain and inflammation can cause memory loss and reduced cognitive function, it can cause permanent nervous system changes. It can cause depression, change brain chemistry, supress appetite and sleep. It is a serious condition that a lot of people underestimate.

Chronic pain is not like the pain you get from a paper cut, or even a broken leg. It drains your energy your motivation.

When you live with chronic pain, you learn how not to show it. Pain becomes our reality so we have to learn to live our lives around it. I’ve laughed and danced around while my insides felt they were tearing. It costs me something to pretend not to be in pain, but the alternative is to never be able to have fun or too often make other people uncomfortable.

Earlier this year I had my wisdom teeth removed. Before the operation I was hooked up to a machine that measured my heart rate, blood pressure, and oxygen saturation. I was talking happily with the nurses, and periodically, my heart rate would jump up for some time. He nurses kept trying to figure out what was going on, until finally one of them thought to ask me if I was having any pain and I admitted I was. They had been unable to tell if not for the heart monitor. If trained professionals cannot tell when I am in pain, what hope do you have?

Ok, so why doesn’t everyone do pot?

Pot is not a panacea. While it is very good for a variety of conditions, pot is also counter-indicated for others, and not everyone reacts the same way. For example some people have had great luck with pot for migraine, while others find that marijuana makes their migraines worse.

While some people find it useful to help control anxiety, others find that the paranoia exacerbates it.

Even in my own use, I have learned that it doesn’t work for all types of pain. It is great when dealing with the pain from my Crohn’s and arthritis, but I have found that it doesn’t work at all for pancreatitis and tooth related pain.

Some people have adverse reactions to marijuana.

How does it work?

There are two active ingredients in cannabis: THC and CBD. Both of these have medical applications and both are useful for pain.

THC is most often used for the treatment of pain, nausea, and aids in relaxation. It is also the ingredient that is associated with the psychoactive side effects some people experience. A high THC strain is recommended for chemotherapy patients and other pain and nausea conditions.

CBD has anti-psychotic properties that act as a sort of antidote to THCs psychoactive effects. High CBD strains are recommended for convulsive disorders including seizures, and can be better for anxiety.

What do you mean by strains?

There are a variety of different genetic lines that lead to slightly different products that in turn yield different effects.

There are three major species: Sativas, Indicas, and Hybrids.

When it comes to the specific science of these three strains, I am not an expert. Some ideas are common knowledge however. Sativas tend to be associated with a more energetic high. Indicas provide a more mellow, sleepy high, and is commonly associated with couch lock. Hybrids combine elements of both. There are also some discussions of a head high versus a body high.

I know that I prefer sativas for days when I need to get work done at home, and indicas when I need to sleep. However, mostly I do a mix of both types, including hybrids to get the desired effects.

Among the species there are different product yields (strains) as well. The best analogy I can think of would be roses. The species might be the difference between creeping vines of roses versus bushes, while the strains would be the different colours that can be produced.

Strains often have interesting names. For example the strains that have been offered by my dispensary include Blue Dream, Afghani Bullrider, White Widow, Pink Kush, Girl Scout Cookies, etc. Each of these produces a slightly different effect and works on different symptoms.

How do I know which strains will work for me?

A little bit of experimentation is needed to know what works best for you, however, there are resources out there that can give you a guide to what the different properties of different strains are. My favourite resource is called Leafly. It lists the strain information, the effects, the medical information, as well the negative side effects like dry mouth, headaches, etc.

The site also includes blog information which includes more 101 information.

Some people, myself among them, find it useful to mix strains to achieve the desired effect.

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.