GUEST POST: Why It’s Hard to Reveal My Disability to Strangers

By Kella Hanna-Wayne

A dancer on a dark background with title of post in white

CN: ableism, chronic pain

With every new person I meet, I have to gauge just how much to tell them about my disability. I try to be as open as possible about my health issues because I want to reinforce the idea that people who look like me- young, relatively fit, no noticeable limitations- can also be disabled. But being open about my disability means opening myself to potential scrutiny of my body, my diet, my medications, my exercise routine. Any decision I make about my physical health becomes fair game for intrusive questions. Until I get to know a person better, I have to assume they will default to treating me as if my health history is in the public domain.

Continue reading “GUEST POST: Why It’s Hard to Reveal My Disability to Strangers”

GUEST POST: Why It’s Hard to Reveal My Disability to Strangers
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Guest Post: Taking the Good with the Bad – A Night at The Opera – Part 2

So, earlier this fall, I had the honour and privilege to attend a showing of “The Phantom of the Opera” at the National Arts Center (NAC) in Ottawa. I was super excited about this. And I tried to keep in mind the positive aspects that came with that night. Taking the good with the bad, one would say.

The tickets were a little expensive… But it’s so rare that Phantom is in town, so totally worth it.

My original date cancelled and I was unable to find someone willing to buy the extra ticket… But my 11 year old niece was happy to attend. (Even if she didn’t repay me the ticket, oops)

I was black and blue as a result of an e-bike crash that week… But I was finally out of bed and able to walk again.

Overall, it promised to be an exciting adventure, and I was really looking forward to seeing my favourite musical live on stage.

Me niece looked absolutely adorable and precious. I had drinks and snacks. We were OUT ON THE TOWN!!!

Continue reading “Guest Post: Taking the Good with the Bad – A Night at The Opera – Part 2”

Guest Post: Taking the Good with the Bad – A Night at The Opera – Part 2

Guest Post: Disembodied

CN: Mentions of death, suicidal ideation,

Think of someone you once knew.

A co-worker. A friend. A family member. Someone you loved. Someone you knew intimately.

Remember the details. The colour of their hair. The tilt of their head as they turned to smile at you. The sparkles of laughter in their eyes.

Close your eyes, and feel their arms around you. The arms of someone who cared. Who held you in your darkest hours. Who protected you, catching you even before you knew you were falling.

Remember how much you loved them. Try to remember the spark of hope you felt when you were with them. Feel within you how loved they made you feel.

And then bring yourself back to reality.

Return to the sad, grim, fact, that they are gone from your life. And no-one can tell you why. Because years ago, they vanished into thin air. Never to be seen again. And there are no answers to be found.

They are just… Gone. And no-one knows why, and no-one can say where. And no-one is looking. The trail has gone cold, and there are no clues left.

Again, bring your heart to remember the feeling that they brought to you. Focus on it. Own it. Hold on to that feeling.

This will be important. Because it is the only way that you will be able to see them long enough to find the answers. Continue reading “Guest Post: Disembodied”

Guest Post: Disembodied

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.

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

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

Guest Post: March is Multiple Sclerosis Awareness Month

The month of March is often associated with St. Patrick’s Day, the first tendrils of spring, Daylight Savings Time, and March Madness for collegiate basketball. March is also Multiple Sclerosis Awareness Month and I’m here to talk about this invisible illness which affects 2.3 million people worldwide. My name is Kacee Cole and I was diagnosed with MS on Christmas Day 2013, just a hair over a month after my 27th birthday. I will begin with general information about the illness, some myths and facts, and finally wrap up with my personal story with this complicated, difficult disease.

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Guest Post: March is Multiple Sclerosis Awareness Month

Dear Nintendo: Let My Son Play Pokemon (Guest Post)

The following is a guest post request from a mother who wants to play Pokemon Go with her child, but can’t because of some of the many ways it is inaccessible to people with disabilities. Her identity will be kept anonymous for reasons of safety and consideration. The following is an open letter to Nintendo. 

Hey Nintendo, some people have disabled children who would like to play Pokemon Go.

Even though the premise of your game is awesome, it could be improved upon with more accessibility.

As the parent of an autistic child (who is intentionally keeping things vague for the sake of this post because I’d rather my son disclose information about himself publicly whenever he personally feels it is appropriate to do so and can consent to it) who enjoys playing Pokemon with his mother, and as a mother who grew up playing Pokemon games of her own, the Pokemon franchise has always been one that has allowed us to bond and spend quality time together. I man the controls, and when my son indicates a preference in one or more Pokemon, I try to incorporate those into our team. (Once we attempted to bring the three legendary birds to the Elite Four in LeafGreen because he liked them a lot. That might have been when type disadvantage was best illustrated, bringing three Flying when the first Trainer specializes in Ice. Moving along…) Based on what I’d read about Go, I thought it would be one of the most awesome games ever to play with him when it came out.

And then it came out.

Continue reading “Dear Nintendo: Let My Son Play Pokemon (Guest Post)”

Dear Nintendo: Let My Son Play Pokemon (Guest Post)