Many people who are financially comfortable (or even well off) hesitate to donate to mutual aid because they can’t confirm legitimacy. This leaves struggling disabled patients desperately trying to support one another. Here’s what my Mom taught me about helping others 🧵/1
She always said it was more important to help others whenever you could - than spend your time worrying about whether someone was “legitimate”. That if you won’t miss the money it’s better to give to someone and be wrong than not to give at all. /2
She also told me that sometimes what is a small amount of money to one person is a life changing amount to another - and it’s not our job to judge what another person needs or why they need it. /3
These lessons have stuck with me all my life. I think it’s beautiful that the disability community comes together to offer support through mutual aid - but it’s not sustainable. We need help from outside the community. If you can give - please do. If you can’t give - share. /4
And remember - you can never know when you might be in need yourself. Don’t sit in moral judgment of others. Life throws curveballs & when you’ve lost your health EVERY curveball is harder to handle. We’re all doing our best to survive. Compassion & generosity go a long way /end
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If you’re looking for a dairy free, anti-inflammatory and nutrient dense pasta sauce … I’ve got you covered with my “green-fredo”. Easy to make, customizable & forgiving…. It’s a great option for people giving up dairy AND a clever way to get kiddos to eat their greens. 🧵/1
I usually make this sauce with broccoli because it blends beautifully & is easy to find and high in essential nutrients. You could easily swap for just about any green vegetable - spinach, chard, collard or kale would all work well. Don’t forget your green herbs! /2
Place the lightly steamed brocolli, herbs, garlic & seasoning into a high speed blender or food processor. Add 1 cup of water or plant based milk and blend until smooth (adding additional liquid if needed) /3
Medical gaslighting is a very real and severe issue that doesn’t get talked about enough. It can lead to lifelong consequences (and even death) for patients. Women & marginalized individuals are disproportionately impacted. It’s happened to me many times - with dire effects. 🧵/1
My first experience was when I was 9 and had painful urination. Doctors repeatedly said it couldn’t be a UTI given my age. It wasn’t until I was peeing blood & screaming at the top of my lungs that it was finally diagnosed. I later found out EDS makes you prone to UTIs /2
Then when I was 12 I got my first period. I remember it vividly because of the horrific pain that accompanied it. I couldn’t stand, couldn’t walk & had abnormally heavy bleeding. Once again I was told it was “normal” and I should take some Advil and push through. /3
I’ve got a family member who hasn’t seen me in 5 years because they “don’t do sick”. Suddenly they wanted to visit. I’m housebound - which limits options. When topic of masking came up - I was rudely shut down. They demanded “normal”. 🧵 on the importance of setting boundaries /1
I became disabled before the Covid pandemic. I’ve got multiple severe health conditions that leave me stuck in bed (and horizontal) the vast majority of the time. As a result I can’t “hide” the fact that I’m sick. /2
This particular person has been rather rude on a number of occasions about how they don’t want to have to see how sick I am. Positive thoughts only type vibe. I was even excluded from a zoom Christmas because I couldn’t fake well & my sickness would spoil the holiday. /3
Why do we undervalue the lives of disabled people so much? Why do we expect them to survive on a disability benefit that keeps them below poverty line - especially when being chronically ill drives expenses up? I spoke to a friend about this & was shocked by the response 🧵/1
We were discussing CERB - the Canadian emergency payment people received if they were laid off due to Covid shutdowns. I mentioned it felt unreasonable that it paid almost double what people on disability receive. /2
This friend informed me that working people expect to be able to live off what they make - and therefore if they’re unable to work they “deserve” more money. Disabled people however need to learn to “budget” for their new circumstances and “do more with less.” /3
The MAiD discussions this week are taking a toll on disabled people. Our view of medically assisted death isn’t as rosy as others.
Disabled & chronically ill patients cost the system a LOT of money. We’re very sick but could take decades to die. A 🧵 on coercion & euthanasia /1
Look at the headline in image above … blatantly talking about how much money MAiD can save the healthcare system (and this was before covid). Yet we still see people talking about how compassionate it is. Can it be compassionate? I’m sure it can be. Is it always? No. /2
When they crunched numbers to come up with 1.68 MILLION in savings - do you think that was limited to terminally ill patients? People who are imminently dying don’t cost our system nearly as much as disabled complex chronic illness patients. We are where the cost savings lie /3
When my mom was dying of pancreatic cancer (after being misdiagnosed as “anxious”) I remember us talking about how at least when I got to be her age… things would be better.
20 years later and things haven’t gotten better - and the pandemic has arguably made them worse. A 🧵/1
When my mom was sick we both genuinely believed that healthcare would improve considerably before I had to face serious medical challenges. It was one of the small comforts we had in a very dark time. /2
I thought we would have far better diagnostic tests but also more equitable care for women, minorities & other marginalized individuals. It's heartbreaking to realize that isn't the case. /3