really struggling with this atm.
ive lost all the strength i fought so hard for the past two years. it doesnt seem fair that it can all be taken away so fast.
im exhausted. trying is exhausting.
disabled consistency prt. 2 prt. 1 here (u dont need to read it to understand this post)
what happens to consistency, to habits, when you have a dynamic disability?
i want us to understand the differences between having a consistent body and having an ever changing one. sometimes you could be so healthy you are working/studying, exercising a few times a week, socialising, and independently caring for yourself. but other times.. you’re bedbound? can’t even shower and brush your teeth twice a day? can’t keep up with texting your friends or social media? what habit is surviving that.
you work so hard to build habits and follow routines you and your doctors have set, and then you achieve it, but then it all gets taken away in a flare-up. you wonder what the point is. its a constant vicious cycle. even abled people know its hard to build habits. it takes time. and you might not have that time.
for abled people, theres no time limit on building a habit. they might have a goal in mind of when they want to achieve it, but theres no actual clock ticking in the background.
for me, and for other dynamically disabled people, we are on a time crunch. you may not be aware of it, but you are. it’s always a race to get things done while you can, build those habits and routines and get consistent and get your life together while you can. because even if you’re not thinking it, you are living on a countdown until your next flare-up. until the next crash, the next time you lose all your progress.
and that cycle, is exhausting. it’s like building a sandcastle right on the shore. you build it and you get to revel in it for a second. then it’s gone. there may be a little bump in the sand where your hard work had just stood, but essentially, you are starting from scratch. while the abled people are up the beach a few metres and their sand is perfectly wet and perfectly dry and the waves never reach it.
then those same people, tell you to just keep building. “eventually you’ll get there!” “keep trying!” “habits take time!” they say. but how? there will always be another wave.
understanding this difference in experience is so important if you want to understand why you can’t just tell a disabled person to form habits or be consistent and expect results.
reaching out for help feels like this:
“hi, i know i need help and i am not coping.. and i dont know what to do that will help me”
“well what do you need from us exactly? what do you want me to do?”
“i dont know…?”
“well i cant do what you dont ask for”
“great.”
fellow LSN disabled people, this is coming from a place of much compassion and love. i hear you when you say you’re jealous of MSN/HSN people’s support. how you wish you could have such support. mental health is complicated and it’s hard to see through emotions and trauma.
but i really need you to understand that our higher support needs disabled friends aren’t inherently privileged for having said support. while it may be that if you had that same support your QOL would improve, they most likely need the support you’re jealous of to literally survive.
the point i really want to make here is there is a difference between support for QOL and support to SURVIVE. people die without these supports. that is not a privileged position to be in.
you’re allowed to be upset and angry that you don’t have the life you want and deserve, but please focus those feelings on society and governments. because they are the ones that created a world in which it is so hard for us to exist.
we need to be friends to each other, not throwing around misdirected anger and blame. please take time to listen to MSN/HSN disabled people and learn about their experiences, there are so many people out there begging to be heard.
being a disabled environmentalist is hard.
i care so much and i wish i could aim for things like zero waste. but i just cant, doing something like that would be ignoring my health needs.
its quite isolating, because i try to find tips and environmental swaps but often they just arent possible for me to use/do and then i feel guilty for that.
even though i know its not my fault and i cant help it, it just triggers my inner ableism and i blame myself for being this way.
i feel like rewording these in some situations could be helpful.
the way that these are often phrased makes them automatically worded negatively: “still” “un-employed” “doesnt” “didnt” it all assists in the effect of the insult, when none of these things are inherently negative or wrong.
this isnt to say you should have to reword these facts. but you can, if you want to start re-scripting the way people see your life, possibly including yourself.
saying just, “i live with my family.” instead of “still” implies it as more of a statement than a complaint. also saying “family” instead of “parents” may help in some situations as it puts you all on the same level, saying parents makes some people think you are being childish, when in fact you are all adults.
when it comes to “unemployed.” its a bit tricky. if you are searching for work, you can easily just switch it out for “im searching for employment.” or if you are studying instead say that. but if you are like me - where neither of the above apply, you can try things like “im working on my health.” or “im trying to discover my passions.” etc.
“doesnt have …” or “didnt do …” can easily be changed to “i chose my health” “i chose a different path” or “it wasnt right for me.” these are all options to switch it from something you failed at, to the thing that you prioritised or can do instead.
Can we stop using "still lives with their parents" or "unemployed" or "doesn't have a drivers license" or "didn't graduate high school" as an insult or evidence that someone is a bad person? Struggling with independence or meeting milestones is not a moral failing.
let's recap what we've learned about the United States in the last few days.
things that are terrorism:
allegedly shooting a healthcare CEO whose company generated more pure profit (not revenue, profit) in a year than the GDP of 94 countries, exclusively by denying coverage to people who pay for it
a 42-year-old mother of 2 using the wrong combination of 7 words during a heated conversation with a call center employee at a health insurance company who was in the process of denying her health coverage.
things that are not terrorism:
mass shooting in a Black church to incite a race war
going to a BLM protest specifically to kill protestors
a neo-nazi running over a crowd of people, killing a woman
targeting and killing 23 latinos in an el paso, texas walmart
killing 12 people in a theatre, shooting 58 others, rigging your apartment with explosives
a QAnon groyper killing 7 and shooting ~50 at a 4th of July parade
killing 3 people and shooting several others at a Planned Parenthood in defense of the unborn
stalking someone relentlessly and then killing them and their child despite months of the victim making police reports
any one of the 1,200 murders committed by US police yearly, the vast majority being minorities
tightening your border while ~100 immigrants (including children) drown every year in the Rio Grande
United Healthcare killing an unnknowable number of elderly people by using faulty AI to deny medically necessary coverage
Aetna killing a woman by refusing to cover her cancer care
Blue Cross killing a 6-year-old by denying her appendicitis surgery
Cigna killing a 17-year-old child by denying her liver transplant
the pharmaceutical industry killing half a million people with opioids in the name of producing revenues in 2023 that rivaled the GDPs of countries like Spain, Mexico, and Australia.
the United States killing 45,000 people a year because they can't access health coverage
make sure you keep this guide handy the next time you find yourself interacting with your insurance company or any other millionaire, billionaire, or an individual who is part of a protected class such as a CEO or president of a corporation.
i LOVE lizzies relationships with her parents she loves them so much.
Source: The Book.
I'm saving up for a bath seat and a wheelie tray that can be used in bed or on the couch... I know most of you are in a very similar financial position to me but if anyone out there has a few $ to spare, I'd really appreciate the help ✌️
my Ko-fi
hot take apparently but just because youre disabled doesnt mean you arent ableist. being disabled doesnt erase your internalized (or externalized) ableism.
if youre paralyzed and you think ambulatory wheelchair users are 'less deserving' of a wheelchair, thats ableism.
if you have adhd and you make fun of autistic people, thats ableism.
if you have dyslexia and think dyscalculia and dyspraxia arent "real problems," thats ableism.
if you have any disability and think ableists should be 'punished' for their ableism by becoming disabled themselves. believe it or not that is in fact ableism, because it perpetuates the idea that disability is something shameful or something that only happens to bad people