Just had someone say not being able to drive because of my epilepsy couldn’t be so bad since she hadn’t driven in five years. Bruh give me your husband to chauffeur me around then.
THIS. People really downplay the toll that no longer being able to drive, to get yourself places, takes on you.
Watching an ableist as fuck movie during class and realizing after I opened my mouth about it just how hard it is for disabled people to fucking get a point across about inspirational porn.
No, The Butterfly Circus is not inspirational. Disabled people pushing themselves to abled standards is a disgustingly common thing that can KILL disabled people. Fuck you and fuck your inspiration porn. Fuck you and your display of disabled suffering to entertain abled people. It was disturbing.
Worst of all was how my teacher took it, as a personal attack. "I just wanted to inspire you all for the weekend, now mine is ruined."
You're a fifty something year old woman, get over your fucking self, Jesus fucking CHRIST. I'm your twenty four year old student who just pointed out the MOVIE'S usage of disabled suffering as prop, and now you think I'm attacking you??
"Nico, you need to calm down", no, Y'ALL need to realize that there's a fucking disabled woman in our class and she had to mute her microphone as she began CRYING, sending me a private message to say thank you, that she was afraid the class would dislike her if she spoke up.
This is what you, as an able-bodied person can do. Speak up about this shit. It makes me so fucking angry, my blood is BOILING.
STOP. USING. MARGINALIZED PEOPLE'S SUFFERING. AS. FUCKING. ENTERTAINMENT.
STOP IT!!!!!
I get so fucking tired of people taking your valid arguments about a movies shitiness as a personal attack. “Hi this movie is actually incredibly offensive to real humans on earth” gets a general response of “how dare you insult this fictional movie about fictional people that I have grown attached to for some reason”
Just reading the description of that movie made my eye twitch. What the fuuuuck.
“Disabled people pushing themselves to abled standards is a disgustingly common thing that can KILL disabled people.”
I’m severely epileptic. 10+ seizures in less than 6 months while maxed out on my current medication. My employer still expects me to DRIVE. I’m legally not allowed to but they want me to. I’ve had a seizure while driving and they still want me to. Let me go ahead and fit the abled agenda and risk killing myself and others. And here’s the kicker.... I’m a nurse. I work in healthcare. I do home visits - 1:1 patient care. Who assists when the nurse who’s there to care for the disabled patient falls out?
hey ive got a question! im physically abled but ive got some mental disorders such as autism and adhd, and i know that most autistics/adhd ppl feels very strongly that we do not want a cure and we’re happy as we are
so i wondered if its the same in physically disabled communities? or would you guys want a cure?
(also ik theres a large variety of physical disabilities so if u know of some groups that do and some that dont feel free to elaborate on that. tbh my question is mostly abt chronic pain sort of stuff)
(also also, im asking u bc you talk abt your disabilities a lot and i figured you would be active in those communities enough to know, but if you dont or you dont feel like answering thats super fine! i just always wondered)
For the most part, you'll find that the vast majority of folks who are physically disabled don't want to be cured, but will take pain relief.
Okay, so in my exclusive Cerebral Palsy group on Facebook, there's over two thousand of us. And there is definitely a heirarchy that goes different ways. Those of us able to walk appear to be in a separate tier from those who cannot. Sometimes "walkers" are seen as "less disabled" - there's a lot of internalized ableism and often we need to play therapists to each other.
Chronic Pain tends to come with the territory, since palsy has been shown to slowly wreak havoc on an aging body. A lot of people are afraid, and it plays a huge role in how society can convince us that complete cures are what we want. Which, of course, ties into eugenics.
And we need to keep this in mind: autism isn't just mental and it's not a disorder on its own, it's a collection of skills, disorders, sensitivities, syndromes, etc, so we can get chronic pain from how our brains react to our environments.
I do think it’s important to keep in mind that some physical disabilities even when treated properly can pose a direct threat to the person’s life. I don’t claim to speak for everyone in the community, but I do think a large portion of the epilepsy community would take a cure if it was offered not because of internalized ableism, but because even those of us who have managed to remain seizure free for long periods of time worry about when our next seizure will be, will we be safe during and after it? What about stuff like SUDEP and status epilepticus? I’m not saying this to discredit what OP said, I’m merely offering another perspective.
I would take a cure in a heartbeat. During my diagnostic stage, I told everyone around me I would prefer for them to find something like an aneurysm or a tumor that has at least a chance of being cured. Living with epilepsy may not seem that debilitating because, for most of us, when we aren’t actively seizing we are relatively fine. But everything that comes along with epilepsy makes it so hard.
If one more person tells me, “I completely understand.” when I tell them how I’m feeling lately, I may lose it. When your life is still normal, when nothing has changed for you, when you still get to carry on day in and day out - you don’t get it.
I’ve had to give up my career. Working at all. Driving. Leaving the house on my own. Taking my kids to the fucking park alone. My brain and body feeling even a semblance of normalcy.
I’ve felt the fear of having a seizure while driving with my child in the car. I’ve seen tiny, terrified faces looking down at me when my brain decides to press play again. I’ve heard the sound of my husband’s voice begging, pleading for me to wake up and breathe but my brain didn’t recognize the words. The confusion of coming to from a seizure and having no clue what happened, just knowing you don’t feel good. The physical pain from cuts, scrapes, hitting my head when falling, contorting my body in odd ways. The ever present headache. Crazy side effects from medications that are intended to, but don’t, control my brain activity. The sadness. The loneliness. The depression that comes along with a chronic illness diagnosis. Another one. What is this, number 10? Just happens to be the most disabling.
I’ve had to make diet changes. Add and increase medications multiple times. Pay thousands for testing. Get poked and prodded. I puke, have no appetite, can only stomach certain foods. My brain is foggy. Memory is spotty at best. The only emotions I feel these days are sad and angry.
When you’re driving your car to your job eating the breakfast you just stopped to get, you don’t get to tell me you understand how I feel. I’m so exhausted, both mentally and physically. I’m sick of looking at the same 4 walls in my home every day. It’s too fucking cold to spend any decent time outside and I’ve run out of things to do. I’m so tired. I want to feel normal again. I want my brain to stop.
But I can’t say this to people. I can’t tell the people closest to me that I would rather die than live with this condition. To those who know, you know. And I’m sorry that you know. Maybe I just haven’t coped yet but this is hard.
Just another way to back pictures up
Halloween 2021
My life will from now on be dedicated to these two beautiful bitches who had carry the too much burden from a young age as they deal with both raising children and taking care of crazy parents / exes while never catching a break.
I love them
In any lifetime. In every lifetime. I love you.
I love being able to say I’m married. Being married to the guy I swore was the only man I’d ever marry is the best part though.
Sometimes I take pictures of him even when the light is shitty. Just thinking about how much I love him. One day I’ll be Mrs. Lewis and I’ll still be sneaking pictures of him and that’s a promise.
I told y’all. Years later and now he’s my husband.
I’m obsessing over my wedding sneak peeks.
“I’m not saying that everything is survivable. Just that everything except the last thing is.”
— John Green, Paper Towns
your future self loves you. they will look through old photos of you with affection, not disgust, nor embarrassment. they wish they could tell you stories of your future, of how much you’ll change, of the people you’ll meet, of how you’ll eventually learn to accept yourself, then love yourself. they will read your diary entries and poems and favourite lyrics, heart aching, tears in their eyes. if only you knew...
your future self loves you. if only they could show you. they are living proof. you’ll turn out okay after all. they wish they were there to console you, dance with you, and make you write it a hundred times: “I AM LOVED”. they will listen to playlists you made, just to experience you again. they will write you a letter - of forgiveness, longing, reassurance. you will never read it. but you will know.
