Guest Post: From quack to quacked, Quark to quarks: A journey to invisibility.

(Note from Ania: This post by Sophie was written with the assistance of a speech to text tool. There may be some typos, which I haven’t been able to correct yet.  I will come back and edit them as soon as I have the spoons to devote to it.)

We live in a world of experts. Scientists. Astronauts. Doctors. Computer programmers. Politicians. Teachers. Husbands. Wives. Parents. Men. Woman. All the people. Everyone you see around you is an expert in their field, even if we all haven’t gone through higher education to obtain a degree.

But you don’t need a degree to be considered an expert in your field. In a lot of cases, the people who will know most about a thing are the people living with and dealing with the thing. And for the most part, people accept these masters of the universe in their own chosen specialty.

Parents are masters in parenting.

Women are masters in being women.

Men are masters t understanding men.

Even children are masters at understanding children.

Social justice warriors are masters at navigating the system and assisting people in distress because of the system.

Marginalized people are masters at knowing what it means to be oppressed because of who you are, or what you believe in.

I am sure that you, reading this, are a master in your chosen domain.

But I cannot speak to what it’s like being a part of that domain. And it’s not why I’m here today, writing this. But I did want to make sure before I began that you understood that I SEE you. You are not invisible to me. And I am quite certain that you will have experienced some or many of these things that I want to speak about. I know that your pain is real. But I must focus my thoughts and speak of the things that I personally know, which unfortunately isn’t every single person on earth, much as I wish I could sometimes.

So let me try this again, from the beginning.

Each and every one of us is a master of our own domain. We don’t all have university degrees to tuck in under our belts, but we do all have our passions, and qualifications. Today’s words will focus on one particular subset of the human culture: Being disabled, and the invisibility that too often comes with it. Because while it isn’t the knowledge I would have wanted for myself, it’s what I have become educated on, by means of the circumstances I’ve been thrown in.

It is in that light, in that guise, that I introduce myself to you.

Sophie, Ph.D.
Partially human, Disabled.

Continue reading “Guest Post: From quack to quacked, Quark to quarks: A journey to invisibility.”

Guest Post: From quack to quacked, Quark to quarks: A journey to invisibility.
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Guest Post: Who Needs Social Justice Warriors Anyway?

CN: For medical details, descriptions of pain,

As early ago as two years back, I’d never heard the term “Social Justice Warrior.” The first I heard of it was from a friend. He made those “Pesky SJWs” out to be horrible things, worse than Klingons out for revenge. I didn’t really understand it, and so had no opinion on the matter. But given that I am a non christian liberal and he’s a conservative christian, I felt there might be more to it than meets the eye.

But, well… Too much life happening, and no spoons to research it. And besides, it doesn’t matter. I don’t need someone out there telling me what to do and how to do it. I’m an adult, right? Even when I don’t feel much like adulting.

Continue reading “Guest Post: Who Needs Social Justice Warriors Anyway?”

Guest Post: Who Needs Social Justice Warriors Anyway?

Guest Post: A Night at The Opera: How A Blind Date Got Blind-Sighted By Humanity

CN: Ableism, Threats of Violence,

It’s been a hard week for me. Today was the first day I could walk semi- normally after crashing my e-bike into a car on Thursday.My legs are black and blue. I’ve got whiplash, sore muscles, and have spent the last several days in bed with icepacks at the ready.

I was happy to be feeling better today, because tonight I was going to see “Phantom of the Opera” at the NAC with my 11 year old niece.

Being barely able to move, with my legs looking like a cross between a gorilla and a black and blue elephant, and not to mention that fabric on my legs is extreme agony, I opted to wear some comfortable pants and running shoes. I wasn’t going to risk falling again by wearing heels, or risk having a miserable evening by wearing clothes that hurt my legs, or revealed their startling mosaic of bruised hairy nightmares to the whole NAC. Pants are definitely more respectful.

When we arrived at our seats, sitting directly ahead of me was someone I knew. The person who told me Phantom was in town and one of the reasons I bought tickets for this showing for this specific section. This way I’d have someone nearby that I knew, and my anxiety wouldn’t be as bad. When we get to our seats, I see that she’s there. So far, so good.

I said hello as I sat down. She looks at me with disgust in her eyes. “Really? You couldn’t dress up? This is the NAC, Sophie, you’re an embarrassment.” Well. I’m sure my hairy black and blue legs would have been more so, thank you very much. The safety zone I’d planned on wasn’t going to happen, clearly, but I had a backup plan. I took out my Anxiety Duck. He comes with me to my appointments all the time, and helps keep me calm. Again, my “friend” felt the need to comment: “Really? Put that away. You’re humiliating me.” OK fine. Guess who’s on ignore the rest of the evening.

Continue reading “Guest Post: A Night at The Opera: How A Blind Date Got Blind-Sighted By Humanity”

Guest Post: A Night at The Opera: How A Blind Date Got Blind-Sighted By Humanity

The Emotional Labour of Asking for Help

I think one of the hardest things for me to learn after I became disabled, was when to slow down, and when to ask for help. We talk about the energy cost that comes with living with chronic illness, but accepting it is still a process. Coming to terms with the fact that you can’t do certain things is hard. You’re determined not to let being sick change you, but you have no choice. You have to. Because you are different now. There are things you cannot do, and moving on and becoming yourself means coming to terms with that.

What many people don’t understand is that it’s not a onetime thing.

It happens again every time we have to ask for help.

Society tells us, as well as everyone in our lives, that we are a burden and that that is all we can be. No matter how much we learn that it is not the case, it is still hard not to internalize that message. The message is passed along in the media around us – with disability being presented as the worst possible thing that can happen to anyone, and in the reactions of people around us.

When Alyssa and I were together for example, it was not uncommon for members of her family to question her as to what good our relationship was with me being so broken. When she had called her mother to announce our engagement, what should have been happy news was instead met with a sense of mounting horror and dramatic exclamations of “no, no, no”. Later when discussing it with her father, the concerns about tying your fortunes to a disabled person came up again. When I was with my ex before Alyssa, so many people would tell me over and over again that I was lucky to have found someone who was willing to stay with me. I think the worst however, was when a friend who also happened to be Alyssa’s partner tried to talk me out of getting a dog to train as a service dog for myself by bringing up how much Alyssa already had to do around the house.

Although it was never flat out said, the implication was obvious. I was a burden.

Continue reading “The Emotional Labour of Asking for Help”

The Emotional Labour of Asking for Help

My Time is Not Yours to Waste

I just wanted to go to the store, to pick up some things I needed. I decided to take my wheelchair. I won’t lie, I wanted to hatch some Pokémon. I also wanted the chance to browse the hardware store for some odds and ends I need to finish up my room. It was a treat for myself – getting the chance to explore the store more than is otherwise possible for me. I even arranged to borrow a bus pass.

Earlier this week, the temperature dropped and I am still adjusting to the sudden cool air. Additionally I hadn’t really taken into account how the speed of the chair, adds some extra wind to the chill. Either way, I made it to the station, and awaited the weekend bus.

Continue reading “My Time is Not Yours to Waste”

My Time is Not Yours to Waste

Dear City of Ottawa: Community Kitchens Help Build Communities

Dear Councillor Taylor,

I hope you are well.

My name is Ania Bula. I am one of your constituents living at the A_____ neighbourhood near Bayshore Park. This summer, the city has been working on updating the local Community Fieldhouse to better accommodate the needs of the neighbourhood. In consultation with local community organizations, the city was notified that our community would greatly benefit from having a full working kitchen, which in particular would include a separate handwashing station.  

It has recently come to our attention that the plans were modified by the city and that instead of the discussed kitchen, they are putting in a warming-kitchen only, which does not even include  the separate handwashing station. Continue reading “Dear City of Ottawa: Community Kitchens Help Build Communities”

Dear City of Ottawa: Community Kitchens Help Build Communities

Guest Post: Suffering Stream of Consciousness

The following is a stream of consciousness poem by a friend of mine who has been dealing with overwhelming medical negligence for several years, most recently blinded by a doctor ignoring medical protocol for a medication they put her on. These are her thoughts in the midst of trying to process her most recent medical traumas and yet another severe pain flare that has had no help from doctors. 

TW: Discussions of Death, Abuse, Suffering, Suicidal Ideation, Medical Neglect, Troll Brain thoughts. These are unedited troll brain thoughts as well and so not controlled for slurs and internalized prejudices.

written by friend Sophie; after spending 9 hours in an endless sob session and panic attack before being given a clonazepam and sitting down to write this as the clonazepam started to calm her down.

I am dying.
Continue reading “Guest Post: Suffering Stream of Consciousness”

Guest Post: Suffering Stream of Consciousness

Not Slacktivism After All

Blogging often gets criticised as being a form of slacktivism: a way of looking like you are participating in social change without actually “doing” anything.

There have been some great pieces out there criticising how this idea is ableist, classist, and I’m sure several other isms as well. Moreover, as someone who is descended from several people who participated in major revolutions, I am more aware than most of the awesome impact that words and writing can have in promoting social change.

Today however, I got to have physical proof that my writing does in fact make a difference. I received a call from an official at the City of Ottawa. Apparently my blog post about how ableism almost killed me last week, made its way to their Facebook page.

I was being contacted so that they could tell me that the sidewalk where my accident happened has had a concrete ramp installed as a temporary measure until they can replace that part in the future with a proper dip ramp that usually serve as accessible access to street crossings.

Because of my blogpost, that curb is no longer a hazard for other people like me. Not going to lie, that news made my day.

Not Slacktivism After All

Ableism at Kanata Centrum Almost Killed Me

Today, I decided to take a break from the manual labour I’ve been doing, while trying to rebuild my office. I had a plan for the day: I was going to grab my wheelchair, take the bus down to the strip mall that has the dollar store, value village, and Michael’s that I’ve been wanting to browse for some time. With the chair, I would be able to actually take my time and look around the stores. Get to know what is really available, without the distraction of my spine starting to seize up and burn.

It was a beautiful sunny day, perfect for travelling around the city. Being in the chair let me explore areas that I can’t see in a car. I found out that there is a great path down by the river underneath Carp Bridge. I was able to do some poke-hunting, and explore the park with the lakes down on Terry Fox. It was perfect.

I was heading back to the bus that would take me back to my own neighbourhood. I was hoping to relax a little under the stars in the park, before finally heading back home. Kanata Centrum is a big strip mall with several different sections, all connected by sidewalks. It’s also where I had to go to get to my bus. I was making my way along the sidewalks coming up to a road crossing. At the end of the sidewalk however, instead of the dip that serves as a ramp, it ended in a straight curb.
Continue reading “Ableism at Kanata Centrum Almost Killed Me”

Ableism at Kanata Centrum Almost Killed Me