Category: Social Structures

We stand against genocide

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Image description: "Jen-oh-side is wrong. Anti-Semitism is wrong. Ceasefire now." in block text over a deep green background. The text is in a traditionally Filipino block printing. A postage stamp in the top left corner says "kapwa & tzedek not war" with a graphic of a daisy in the barrel of a weapon.
Image description: “Jen-oh-side is wrong. Anti-Semitism is wrong. Ceasefire now.” in block text over a deep green background. The text is in a traditionally Filipino block printing. A postage stamp in the top left corner says “kapwa & tzedek not war” with a graphic of a daisy in the barrel of a weapon.

I am a disabled Filipina settler in so-called Canada, born on land that has seen and continues to see the ongoing gen0cide of Indigenous peoples. My peoples survive 400+ years of cultural genoc1de.

My home is also a Jewish home. In this home, we value tzedek and kapwa: justice and our shared humanity.

We stand against systems of oppression in all their forms. We understand power and oppression to be intersectional. We stand against genoc1de in all cases.

In 1944, Raphael Lemkin, a Jewish lawyer from Poland, defined genocide (in part) as, “It is intended rather to signify a coordinated plan of different actions aiming at the destruction of essential foundations of the life of national groups, with the aim of annihilating the groups themselves. The objectives of such a plan would be the disintegration of the political and social institutions, of culture, language, national feelings, religion, and the economic existence of national groups, and the destruction of the personal security, liberty, health, dignity, and even the lives of the individuals belonging to such groups.”

Becoming comfortable with being disabled is a process

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Curving text wraps around a photo of Kaia and Bunny with her new red rollator. The text reads, “Becoming comfortable with being disabled is a process.” Below the photo it asks, “What has helped or hindered your process? Do you still have doubts about identifying as disabled?” Kaia is an Asian woman with long black hair, a grey top, and a floral skirt. The background is a mottled green, and The Willow’s Work logo is in the bottom centre. ⁣

BECOMING COMFORTABLE WITH BEING DISABLED IS A PROCESS. Especially if you have not always been disabled. ⁣
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What was your process like? Do you still experience doubts around identifying as disabled? How do you feel about the experience of being disabled? ⁣
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To some, it may look like I’m secure in being and identifying as disabled. But this was a long, non-linear, and ongoing process. I had to become secure about claiming my expertise in my own life. I had to wrestle with the medical model, as someone who was undiagnosed for a full decade. And I had to accept that I am disabled- my bodymind does not function “as expected”. It doesn’t happen overnight! ⁣
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The many functions of diagnosis (more than treatment!)

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A yellow background with a big blue magnifying glass showing a heartbeat pattern. The title text reads, “The many functions of diagnosis” and at the bottom in bold, “What would you add?” In the center it asks, “Have you been told there’s no point seeking a diagnosis because there’s no treatment available?” and then lists the above functions, “Community, understanding, validation, statistics (being counted!) and pathologizing.” The Willow’s Work logo sits at the bottom of the image.⁣

I’ve heard countless stories of folks who are told there’s no point seeking a diagnosis because there’s no treatment available. But there are so many more reasons diagnosis exists. ⁣
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What other functions of diagnosis would you add? ⁣
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Community – Often, disability communities are organised by diagnosis. This can be a huge barrier to finding folks who relate to your experiences when you’re undiagnosed! (But the good communities accept people who are exploring or self-diagnosed!) ⁣
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Understanding – Diagnosis gives us a framework to understand what is happening and what may happen with our bodyminds in the future. ⁣
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Validation – While the medical model and neoliberalism still rule, diagnosis is key to recognizing that your experiences of illness are real- for yourself and others. ⁣
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Statistics – Receiving a diagnosis means we’re counted among folks with that illness, which is used to allocate research funding and means we’ll be able to access treatments if they become available in the future. ⁣
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Pathologizing – The dark flipside of validation, receiving a diagnosis means reading your experiences as “wrong” or “disordered” and understanding them within the medical model- though of course there are so many other ways to understand our experiences than just the medical model. See: neurodivergence and Madness! ⁣

Diagnosis: Relief!

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A blue and teal drawing of a medical chart with a pop-out heart, and title text “Diagnosis: relief.” The subtitle reads, “A new, expected diagnosis can be scary.” And in bold, “But receiving a solid, accurate diagnosis for issues you’ve already been living with can be a huge relief!” Smaller text reads, “Diagnosis is complicated, but you don’t have to feel ashamed if a new one comes relief.” ⁣
A blue and teal drawing of a medical chart with a pop-out heart, and title text “Diagnosis: relief.” The subtitle reads, “A new, expected diagnosis can be scary.” And in bold, “But receiving a solid, accurate diagnosis for issues you’ve already been living with can be a huge relief!” Smaller text reads, “Diagnosis is complicated, but you don’t have to feel ashamed if a new one comes relief.” ⁣

A NEW DIAGNOSIS SUCKS WHEN YOU THOUGHT YOU WERE HEALTHY- BUT IF YOU’VE BEEN LIVING WITH ILLNESS ALREADY, IT CAN BE A RELIEF. ⁣
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My partner made this astute observation lately: a new diagnosis is a bad thing when you thought you were healthy. ⁣
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But when you’ve already been living with illness or disability, the correct diagnosis can be a relief! ⁣
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Because it can mean better access to care, understanding your needs better, and better treatment from healthcare providers (depending on the diagnosis.)⁣
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(At the appointment during which I gained this learning, my GP showed a good understanding of diagnosis beyond medical meaning- and I was so shocked I couldn’t respond. But I’m very grateful for that.) ⁣
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What accommodations would you need to work safely? (Dream big!)

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A pink background with black title text, “What accommodations would you need to work safely?” In standard font, “Pretend you’re telling a recruiter exactly what you need in the comments below.” And in bold, “How do you define a safe fulfilling workplace? What accommodations will help achieve that?” There’s a graphic of a person with long black hair and a light red shirt drinking coffee while looking at their laptop. The Willow’s Work logo sits at the center bottom.⁣⁣
A pink background with black title text, “What accommodations would you need to work safely?” In standard font, “Pretend you’re telling a recruiter exactly what you need in the comments below.” And in bold, “How do you define a safe fulfilling workplace? What accommodations will help achieve that?” There’s a graphic of a person with long black hair and a light red shirt drinking coffee while looking at their laptop. The Willow’s Work logo sits at the center bottom.⁣⁣

WHAT ACCOMMODATIONS WOULD YOU NEED TO WORK SAFELY- NO MATTER HOW OUTLANDISH? This post was inspired by @salat.and.spoon ‘s sheer comedic genius. ⁣⁣
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Write out a paragraph describing your accommodations to a prospective employer and let the laughs roll in- and then consider how some of these may feel silly, but some of them are arbitrarily considered unreasonable. ⁣⁣
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Here’s mine: ⁣⁣
“I would love to work for your organisation! In order to work without worsening my health, I will need flexible hours. I can work 45 mins-3h at a time, when I’m feeling well enough to, with zero notice. That can mean I work up to 12 hours a week, or zero hours in a season. Communication must occur almost solely in writing, with few exceptions. I will be working from home, and need lunch delivered each day I work, because as a result I will not be able to even microwave a meal. I will need full and extensive health benefits, so that I can cover the cost of in-home bathing, cleaning, errands, and meal prep support that I will need to be able to redirect my energy towards work.” ⁣⁣
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What medical admin do you do?

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ID: A green image from The Willow’s Work with bold text, “What kind of medical admin do you do?” A list to the right reads, “Follow-up, insurance claims, telephone tag, research, community” surrounded by pastel wobbly ovals. To the left is a graphic of someone with short hair blushing as paper falls out of their folder. ⁣
ID: A green image from The Willow’s Work with bold text, “What kind of medical admin do you do?” A list to the right reads, “Follow-up, insurance claims, telephone tag, research, community” surrounded by pastel wobbly ovals. To the left is a graphic of someone with short hair blushing as paper falls out of their folder. ⁣

WHAT KIND OF MEDICAL ADMIN DO YOU DO? In a recent post we talked about all the ways we manage our health beyond the medical- but medical admin can be a HUGE strain on sick & disabled folks! ⁣
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  • Making appointments⁣
    -Following up with elusive specialists ⁣
    -Keeping up with meds⁣
    -Checking insurance coverage⁣
    -Filing insurance claims⁣
    -Keeping health care providers up to date on the results of other appointments ⁣
    -Pre-filling forms⁣
    -Telephone tag with health care providers⁣
    -(Re)Submitting paperwork ⁣
    -Researching care options⁣
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    ID: A green image from The Willow’s Work with bold text, “What kind of medical admin do you do?” A list to the right reads, “Follow-up, insurance claims, telephone tag, research, community” surrounded by pastel wobbly ovals. To the left is a graphic of someone with short hair blushing as paper falls out of their folder. ⁣
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Accommodating your needs at home: The little things mean a lot

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Image description: A yellow background with black text. The title reads, “How do you accommodate your needs at home?” And in smaller letters, “Little changes can make a big difference! Accommodations aren’t just for work or school- they’re for home and fun times too!” There’s a drawing on a short haired person wearing green over-ear headphones lying on a blue couch in the bottom left, and The Willow’s Work logo. ⁣ ⁣
Image description: A yellow background with black text. The title reads, “How do you accommodate your needs at home?” And in smaller letters, “Little changes can make a big difference! Accommodations aren’t just for work or school- they’re for home and fun times too!” There’s a drawing on a short haired person wearing green over-ear headphones lying on a blue couch in the bottom left, and The Willow’s Work logo. ⁣
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ACCOMMODATING YOUR NEEDS AT HOME: LITTLE THINGS MEAN A LOT. ⁣
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What little (or big!) changes have you made to accommodate your needs better at home? Share them in the comments! ⁣
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I’ve made changes like:⁣

  • We mounted a folding chair to the bathroom wall so I can sit while I brush my teeth and wash my face ⁣
  • I bought myself a Rotato Express, so I can enjoy potatoes despite having a mild allergy to their skin without spending all my spoons peeling them ⁣
  • 95% of my wardrobe is sensory friendly to my preferences⁣
  • I skew the soil for my plants towards holding water, so I don’t have to water them as often (some plants will hate this)⁣
  • I use an exercise timer to track my physio exercises- this is great for both my dyscalculia and ADHD! ⁣
  • When I cook or bake, I often make extra to set aside and freeze in single-serving portions like DIY microwave meals⁣
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    Image description: A yellow background with black text. The title reads, “How do you accommodate your needs at home?” And in smaller letters, “Little changes can make a big difference! Accommodations aren’t just for work or school- they’re for home and fun times too!” There’s a drawing on a short haired person wearing green over-ear headphones lying on a blue couch in the bottom left, and The Willow’s Work logo. ⁣
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The stages of un-diagnosis

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Image description: A dusty pink background with black text, the same as the image caption. In the lower right corner is the wiggly path of a pee, and The Willow’s Work logo. ⁣⁣
Image description: A dusty pink background with black text, the same as the image caption. In the lower right corner is the wiggly path of a pee, and The Willow’s Work logo. ⁣⁣

THE STAGES OF UN-DIAGNOSIS. I was sick for 10 years before I had a conclusive diagnosis, and I’m still in the process of seeking diagnosis and care for common comorbidities. What kind of path are/did you have to take to access diagnosis, if at all?⁣⁣
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Being sick without a diagnosis is an incredibly stressful position to be in- no answers, no treatment, and outside of the “protection” of a medically valid explanation for what is happening. ⁣⁣
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1 – Seeking Help, “Something is wrong and nothing I do is helping.” ⁣⁣
2 – Medical Gaslighting & Gatekeeping or Just Apathy, “You’re fine, you just need to lose weight.” ⁣⁣
3 – Self-Diagnosis & Self-Advocacy – “I know what’s wrong, but no one will believe me.” ⁣⁣
4 – Someone listens! ⁣⁣
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It’s often a frustratingly repetitive process, often going through steps 1-4 multiple times before you ever hit a conclusive diagnosis, if ever. And since chronic illnesses tend to travel in packs, many folks will have to go through these processes over and over again. ⁣⁣
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Grief of losing relationships with chronic illness

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Yellow blocks with black text reads, “Losing relationships when chronic illness changes your life.” The background image shows someone leaning on a windowsill with their hand on their head. ⁣
Yellow blocks with black text reads, “Losing relationships when chronic illness changes your life.” The background image shows someone leaning on a windowsill with their hand on their head. ⁣

GRIEF ABOUT ABLEISM: RELATIONSHIPS. Healthism can really do a number on our relationships. ⁣
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Sometimes folks have to adjust to (and grieve) how our illnesses have changed our lives and theirs.⁣
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Sometimes people are caught up in healthism, in the idea that we’re sick because we’re not trying hard enough and failing our “responsibility” to seek wellness.⁣
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Losing relationships with people we love is a major source of grief, and one that takes time to learn to live with. ⁣
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Grief over medical trauma

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A yellow background with black text, “How do you manage grief from medical trauma?” And “It is HARD to know that your best chance of getting help also carries the risk of harming you- sometimes significantly.” A graphic shows someone crying while wearing a mask, while a person with a stethoscope holds their hands. ⁣⁣
A yellow background with black text, “How do you manage grief from medical trauma?” And “It is HARD to know that your best chance of getting help also carries the risk of harming you- sometimes significantly.” A graphic shows someone crying while wearing a mask, while a person with a stethoscope holds their hands. ⁣⁣

GRIEF OVER MEDICAL TRAUMA. For me, there are two kinds of medical trauma I deal with. How do you manage this? ⁣⁣
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  1. Trauma from difficult medical interactions.⁣⁣
  2. Trauma from knowing the system has and does not serve me well. ⁣⁣
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    It is HARD to be dependent on a system that hurts you. It is HARD to know that your best chance of getting help also carries the risk of harming you- sometimes significantly. Sometimes in ways that may make it harder for you to get help in the future.⁣⁣
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    And while knowing that, you still have to navigate the inequitable power dynamics of medical systems. Have you disengaged from medical systems because of medical trauma? How do you arrange care outside of medical systems? ⁣⁣
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