Disability

What ADHD Can Look Like

It took a long time to recognize that I have ADHD.

This is not an uncommon story for women and non-men with ADHD, Autism, and a variety of spectrum disorders. Symptoms are often excused as being a lack of discipline or an influence of their gender. Interestingly, many women who are later diagnosed or discover that they are autistic get a diagnosis for ADHD fist.

In school, one of the most common complaints heard from teachers was that I was too chatty. I liked to talk a lot, and very quickly. Sometimes people couldn’t understand me because I spoke so fast, and yet I would hear time and time again how bright I was or how articulate. I would ask endless questions, of everyone. I could never seem to learn that whole “don’t talk to strangers” lesson. In fact even now I find myself talking to strangers. When I left for university, my parents were surprised by how many people around town seemed to know me. While my frequent conversations with strangers bothered my mother endlessly, even into my adult years, so often the people I talked to would end up spilling their stories to me. There are times when one question leads to me seemingly learning a person’s entire life story.

At school, my focus would begin to wander a few months into the school year. I would start of the school year strong, then plummet towards the middle of the year, and then make back some of the marks towards the end. I followed this pattern throughout all my schooling.

Homework was difficult. If it was too easy, I wouldn’t pay complete attention and make inattentive mistakes. If it was too difficult, it was hard to stay focused and still long enough to understand. The longer it took, the more anxious I would get and the more difficult it would become to focus. I felt like I was unintelligent, and often my dad helping me with certain work would turn into screaming matches until suddenly something clicked and it all made sense. (Strange confession, I actually enjoyed those screaming matches with my father, feeling a strange sort of pride that I was the only one who could make him raise his voice. Sometimes I think he enjoyed it too.)

I found a lot of the books for school extremely tedious. I remember the teachers complaining about the fact that I mentioned that I preferred English books to French books. I was at a French school, so I can see why they had a problem with that, but no one considered that my problem might not be with the language, but rather with the fact that the French material was selected for me, while the English material I got to choose myself.

The stories I chose myself were more engaging, more enjoyable. They didn’t follow the same patterns that every “learn to read” type story did. Where the story doesn’t seem to matter so much as they were looking for excuses to use specific words. (more…)

I almost died last week.

CN: Descriptions of withdrawal, hospital admission, medical symptoms and needles.

It wasn’t an accident, or even a sudden onset of something like appendicitis. No, my brush with death came about as a result of fear. Specifically, other people’s fear. Fear of addiction, fear of being wrong, and fear of being fooled.

You see, the week before I was admitted with Crohn’s. I went to an appointment with my Gastroenterologist and he sent me straight to the ER. I was admitted, and put on high doses of Dilaudid, after the usual adjusting games where they started me on 1mg every 6 hours, before finally conceding that 2 mg every 4 was what was needed. In addition to that, I had Gravol and Benadryl to control the various side effects of the opiate.

I spent the week essentially zonked out after several weeks of increasing pain and nausea, and a trip to the ER every 2 weeks since Christmas. My admission came on the heels of two weeks of being sick with a sore throat, which kept me not just from being able to take my Remicade, but my medical marijuana as well. My throat hurt too much to handle the irritation from the smoke.

My crohn’s had gone into overdrive. I wasn’t digesting, I was in pain, and I needed help.

The reason the doctors agreed to finally treat my pain properly is that I told them, that once I got home I wouldn’t be taking dilaudid anymore.

Not one doctor stopped thinking about their fear of addiction long enough to hear what I was saying and remember their training. (more…)

Guest Post: “Women’s Work”

This is a guest post from Sunflower Punk of Social Justice, posted with permission.

People would always tell my mom she was lucky she had at least one daughter. They would tell her I would help her when her parents were elderly and needed taking care of. No one ever mentioned my brothers. It was always like that; the girls in my family were expected to take care of their parents even after marrying and making lives of their own. The men were never expected to though. In fact when a man was taking care of a parent, I’d hear how selfless and wonderful that man was. My grandma ended up taking care of her mother-in-law, brother-in-law and two sisters-in-law. My grandma is the best example of a woman dropping everything to take care of someone else, often at the expense of her own health.

Now, it’s on me and my daughter to take care of my mother and grandma. I’ve heard it plenty of times. “It’s so great you had a girl. If you’d had a boy you’d be alone”. They don’t expect TJ to have a life of her own when she’s grown. If I had a boy, they would expect him to leave me as soon as he was able.

I’m the one in charge of mami’s affairs when she dies. I’m the one who has to make the medical decisions should she ever end up in the hospital. Grandma is sick and may need surgery. Who does the responsibility fall on? Mami. But since she isn’t well, it’s my job. My 6-year-old daughter is expected to help out too. I have two brothers. One of them lives with grandma. But I’m the “girl” so it’s my job to take care of everybody.

My brothers are able bodied. I am not. But I had the bad luck of being assigned female at birth. I can’t leave grandma and mami to fend for themselves without someone accusing me of being selfish. Even if I protested and mentioned my brothers, I’d be told that it isn’t proper for sons to take care of their mothers. This was made clear to me when I was nine years old and my mother had a hysterectomy. It was my job to help her wash up and get dressed. One day I couldn’t help her because I was sick. So my younger brother volunteered. My grandmother started yelling at me. She told me I was lazy and that it was wrong for a son to see his mother naked. I questioned what mami was supposed to do if she hadn’t had a daughter. I was slapped and told to stop talking back.

I wouldn’t leave mami and grandma to fend for themselves. I’m not that cruel. I wasn’t conditioned to be selfish. I was conditioned to never think of myself. It’s taken me a while to get out of that thinking. It’s taken me a while to learn to say no and to take care of my needs.

When the time comes to take care of either mami or grandma, I’ll do it. I’ll know it’s because it’s expected of me but also because no matter how hard I try I will never be callous like my brothers. I know I’ll hear all about how selfless I am and what a good daughter I am, and don’t I hope TJ will take care of me in my old age.

And I will know that if I ever need TJ to take care of me, it’s because I earned her love and respect, not because it her “womanly” duty or because she owes me.

 

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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Lovecraft Letters 6: A Wave of Murderous Sex

"I am deadly with crutches. Them fuckers are lethal in my hands. I like, and want, you. Will you text me? --X."

“I am deadly with crutches. Them fuckers are lethal in my hands. I like, and want, you. Will you text me? –X.”

HELLO LADYFACE.  IT IS IMPORTANT TO ME THAT YOU KNOW THAT I AM A MURDEROUS DYNAMO OF SEXUAL LETHALITY.  MY THUNDERSEXINGS ARE ILLEGAL IN MANY COUNTRIES DUE TO STATUTES BANNING THE USE OF WELDING TOOLS TO REPAIR INJURIES.  I AM ABLE TO RENDER OBJECTS LETHAL BY CONVEYING MY DESIRES AT THEM THROUGH MICROWAVE BEAMS.  ALSO, I AM ABLE TO RENDER ORGANISMS COOKED AND SOMETIMES EXPLODED BY CONVEYING MY DESIRES AT THEM THROUGH MICROWAVE BEAMS.  THE INTENSITY OF MY SEXMURDER CAN BE MEASURED ON THE RICHTER SCALE AND ON THE REALLY LONG RULERS THAT ASTRONOMERS USE TO MEASURE SPACE.

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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.”

 

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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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…)