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: 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?

Making Peace with my Body

CN: This Post includes mentions of assault, drug use, and body image issues

On May 14th, I finally managed to get my first tattoo. Ever since I was a kid, I had an obsession with drawing pictures on myself. Whenever I was able, I would get henna tattoos of various sorts. I loved the idea of wearing art on my own skin.

Growing up, my parents would appreciate the art, but still disapprove of the whole concept of tattoos. They believed them to be irresponsible, silly, and a waste of money. They made the jokes that have become a social trope, about the hilarity of aged skin and what those tattoos would look like on a senior. It’s not uncommon to hear boomers of all sorts complaining about them and about the people who get them.

Until I was diagnosed with Psoriatic Arthritis and lost major functionality in my legs, I expected to grow up to be a doctor. If not that, I at least expected to be a professional of some sort. I knew that I would be doing myself if I got a tattoo somewhere visible, and so I made myself a deal: I wouldn’t get a tattoo until I turned 25. If I still wanted it by that point, then it was something I truly wanted and could find a way to make it happen.

Continue reading “Making Peace with my Body”

Making Peace with my Body

Dismissed By People like You

CN Spoilers for Grace and Frankie, NSFW, Discussions of Sex, Consent, Mentions of Rape

Note: The bottom quote does not include some of the text, but has been edited down to contain the relevant parts of the discussion.

Grace: What are we doing? I’ll tell you what we’re doing. We’re We’re making vibrators for women with arthritis.

Frankie: Yes! Vibrators! Brilliant!

Grace: Oh, grow up. Older women masturbate too.

Frankie: And we have vaginas.

Brianna:  I highly doubt there’s a vibrator market for geriatric women with arthritis.

Grace: There is. I’m in agony.

Frankie: It takes a lot longer for us to get off, Sol.

Grace: She’s right. Our blood doesn’t flow as easily – and our genital tissue is more delicate. I did some reading. The more effort it takes to orgasm, the more you irritate it, and the more it inflames your arthritis. And I mean shouldn’t older women have it better than that?

Mallory: How do I explain to my children that their grandma makes sex toys for other grandmas?

Grace: I’ll tell you what you can tell them, honey. We’re making things for people like us, because we are sick and tired of being dismissed by people like you.

So ends the second season of Grace and Frankie. The line “We’re making things for people like us, because we are sick and tired of being dismissed by people like you.” Seems to me like a perfect summary of the first two seasons of Grace and Frankie. Nominally the show is about two older women relearning how to live on their own after their husbands leave them for each other.

More than that, the show is about two older women realizing the extent to which they have been taken for granted, and the extent to which women past a certain age get treated as invisible and irrelevant. The level to which women’s identities are subsumed into that of their families and especially their husbands.

Continue reading “Dismissed By People like You”

Dismissed By People like You

PSA: Don’t Touch Accessibility Devices

Accessibility Devices are, for all intents and purposes, a part of our bodies and should be treated as such.

DO NOT touch an accessibility device WITHOUT CONSENT. In case this is not clear, I mean the consent of the disabled person.

Do not touch a wheelchair without the consent of the person in it.

Do not touch a walker or a cane without the consent of the person using it.

Do not move a walker or cane out of the way, even if the person isn’t using it right now.

Do not push a wheelchair without consent, even if you are just trying to help. Even if you just want to make it easier for them to get up a hill.

Do not put a cane where the person who needs it can’t reach it. It is not funny.

Do not take a person’s prosthetic. It is not funny.

Do not push a person’s wheelchair out of your way, or to make them go faster. If you wouldn’t shove someone out of the way, then consider pushing someone in a chair as the equivalent.

Do not take a person’s hearing aid. It is not funny.

Do not try to make a person’s hearing aid produce feedback.

Do not push someone wearing a hearing aid into a pool, or spray them with water.

Do not touch a service dog. Doesn’t matter how cute it is. Doesn’t matter how small it is. If the dog is wearing his vest or currently working, DO NOT TOUCH THE DOG. (Or Any Other Service Animal)

Do not talk or stare at a service dog – dogs are social and if they are paying attention to you they are not paying attention to their job. They’re trained, but they’re still animals who CAN get distracted.

 Do not put a walker or a cane somewhere else, even if it is not currently being used.

DO NOT try to help by lifting their walker or the person themselves unless asked. If you offer, respect their no.

Continue reading “PSA: Don’t Touch Accessibility Devices”

PSA: Don’t Touch Accessibility Devices

Understanding Ania’s Weird Body things

I write a lot about my disabilities and illnesses. I’ve discussed what trips to the hospital are like and what a regular day can look like. I’ve shared advice for new patients based on what I’ve discovered myself in the time I’ve lived with them. I have never, however, taken the time to just put together a list of definitions of what those various conditions and disabilities are.

So without further ado, I introduce a glossary of my weird body stuff.  

Continue reading “Understanding Ania’s Weird Body things”

Understanding Ania’s Weird Body things

Fear of Menstruation Is Why I Can’t Walk

On my Facebook memories page, I found an old Tumblr picture that includes stories from a series of girls talking about how their appendix burst because they didn’t realize the pain they were feeling wasn’t cramps. The post goes on to explain the difference between menstrual pain and appendix pain. The stories were a way for girls to discuss just how painful cramps can be – that appendicitis, which is known to be extremely painful, was not different enough from their regular menstrual pain to be noticeable.

I had shared the post, along with my commentary that the suggestion to talk to your parents or school nurse about pain, even if it was “only cramps”, ignored the reality of most people who experience menstruation who are told that they are overreacting and to suck it up. Many of us have been told that all women deal with it and that it’s not that bad. Even when my cramps would leave me shaking and with a fever, I was expected to go to class and carry on as though everything was normal. After all “every woman goes through the same thing”. (Not all women actually, and not all people who do are women, but that’s another post for another time). Continue reading “Fear of Menstruation Is Why I Can’t Walk”

Fear of Menstruation Is Why I Can’t Walk