Me Giving A Pressed Conference: Our Advocacy For The Disabled Must Include The Addict, The Imperfect

I wish there was a law against strobe bike lights. Last night i literally had a seizure because my boyfriends roommate got home when I was outside, and suddenly the yard was strobing.

Like okaay, TV rules were changed cuz of that one episode of pokemon that gave kids seizures right? So how come its chill that people can ride around through town with strobe lights attached to their bikes? What if a kid is in a car behind you and has a seizure? What if someone is walking down the street and suddenly your bile is the reason they are in the back of an ambulance?

As someone with photosensitive epilepsy, I've been taught my whole life to avoid the flashing triggers. When things are flashy online youre told to just avoid the internet, when stores have bad lights dont shop there, no clubbing or parties because there will be strobes. It feels so unfair that even when we go out of our way to avoid seizure triggers, people still will find a way to make your world smaller and smaller.

Even on a not epilepsy note, they are literally more unsafe for bikers because the strobing light makes it harder for night drivers to tell how fast and where exactly you are than a non blinking light......

not be able communicate by words means… constantly be misunderstood. misinterpreted. not have any way show own perspective, your side of story. your story always written talked about interpreted read thru other people.

someone did something wrong you. someone hurt you. someone say wrong thing…

someone make up malicious thing about you. maybe that you rude ungrateful bad temper behavior problem. it now become truth it now become you because there no way you correct them.

you can’t educate them. you can’t explain it to them. nevermind that, for example, you severely disabled n having symptoms that impact quality of life, or have symptoms that dare inconvenience people - can only watch as people around you speak “for” you not with your interest in mind but of their own selfishness - that people who can communicate by word say you only do that because you lazy, you selfish, want attention, on purpose, just want to for no reason, faking, inherent personality flaw.

not just big things. more often it those small things that build up every day, happen tens n hundreds of times each day, every day, every week, every month, every year… more often it those small things that add up that break you.

imagine everything bad, incorrect, & bad and incorrect thing said about you in your life. n now imagine you not able defend yourself, explain yourself, or even say those wrong not true.

n any attempt of yours to maybe protest, not enough, people not understand, or downright not listened to, made fun of. at first you shake head make noise meaning no all calm. after while of it not work you get frustrate n it start showing. you get impatient n snappy, why none of you understand, is any of you even trying. but people around you with privilege of able communicate n defend self thus never have experience of not have that, find it such basic of skill that they no longer see it as acquired skill but instead see as innate, born in, natural, cannot imagine person not have it just like can’t imagine living person not breathing—they only see their perspective n only see their interaction n not the many, hundreds n thousands, of previous communication where no one understood you (or even tried to). so they mock you (sometimes they the one who on purpose provoke you to see your reaction like you monkey in cage for their entertainment), geez big reaction why can’t you be patient. n you get label, impatient, rude, explosive, anger issues.

you protest in only way you can without words. you do it by sounds n noises n movement. you raise voice you scream you smash thing around you you hit yourself in frustration you hit other people who don’t understand you because you frustrated at their incompetence n how much they failing you. because. show me another way person can communicate without words. show me way that one can continue do after tens n thousands of misinterpretations n miscommunications n malicious interactions.

you communicate in only way you can with only emotion you can feel at this point: anger, frustration, helpless. be misunderstood, even smallest innocent one become trauma become trigger. miscommunication alone can set it off, make you see red n see billion of previous miscommunication where everyone failed you n left you to fend for self. then the backhanded jab that sometimes follow, that make thing exponentially worse.

you communicate in only way you can with only emotion left you can feel that consume you. loud sounds, screaming, get physical. it not earn you be understood. it only earn you this: be called impatient, irrational, explosive, land mine, rude, ungrateful, annoying…

“behavior issues.”

and that’s another misinterpretation of you you can’t defend yourself against. cycle repeats.

n other verbal people only listen to other verbal people. so these descriptions of you become “your truths”.

n the true you left there. to rot.

a lot people with no functional communication (either because no ability, or because circumstances) labeled as have behavior issues. yeah, no fucking shit. try it for a while. anyone would “have behavioral issues” in these circumstances.

no one seem to care. so okay fuck yeah am difficult kid, have behavioral issues, make your life miserable. yeah am terrible person, have internet personality flaw of no fault but my own. except now do it on purpose, make it true now, put ability to control own truth in own hand. because you all seem want me be that so bad. so now you get it. don’t complain now, you all asked for it really really nicely.

but deep down. at most basic. hidden beneath. really just. want be understood. want be helped. want people to learn my communication.

“many behavior is communication” yes, those kind of behaviors should be respected n valued n listened, but try behavior your way out of correcting n explaining everything just said in post to person who just don’t seem to get it

without rely on good grace of nice people around you who keep on play guess games n give out guesses in words you can nod or shake head to. now, that’s cheating.

people not nice to people who *have no choice* but to *only* rely on behaviors & vocal noises to communicate

n, even if every single person nice. behaviors n vocal noises alone, not enough.

this written with full time experience in mind

The r slur is a nasty, nasty word and I do not understand how so many otherwise progressive people hurl it around like confetti. A lot of yall have zero solidarity with those who are intellectually disabled. You are not ""reclaiming"" it when you use it to insult someone. Be real, you just wanna use it cuz it gives you a little surge of catharsis whenever you are Big Mad. Fuck you.

Not going to tag a very icky post that I found but it’s not hard to find. So, here’s your reminder that;

Self suspecting and self diagnosed autistic people are NOT taking resources from diagnosed people. You can’t get autism services without a diagnosis, you can’t go to any therapies really without a diagnosis and so on.

Autism accessories have a abundance supply. So yeah, get those ear defenders, get those sunglasses, get those stim toys.

You aren’t taking anything from diagnosed people.

Stop saying self diagnosed people are taking away from diagnosed people, because they’re not. They have their space in the community. The community is big enough for them.

I hate hate hate hate hate aspie supremacy rhetoric I hate it so much. So many fucking people on here say they not aspie supremacists but the only difference is they don't say asperger they still believe that all autistic people are low support needs and only need help because society is bad and wouldn't be disabled if everyone was autistic and it's not true. Think that autistic people who can't take care of themselves aren't autistic at all and don't actually exist and I hate it.

when a disabled or chronically ill person tells you they cant do something, fucking listen. our limits arent negotiables, we cant hold on for "just a little longer", its more than "just one second". stop trying to get us to push ourselves. it's basic respect.

Sia’s overwhelmingly offensive movie, loads of comedians raising money for an organisation that wants to find a ‘cure’ for autism and now Elon Musk presenting himself as representative of people with ‘Aspergers’- this is really the year of celebrities deciding gang together to fuck over autistic people huh?

Just a not so friendly reminder that if you

- Think compulsive liars are completely in control of their lies - That they are abusive and manipulative - That they can just stop lying

Unfollow me now. Compulsive lying is often developed from childhood abuse/neglect/trauma and i cant do anything to stop it. All of my lies are always harmless shit and i dont even know why i lie about them. I just finished telling a lie about what i ate for lunch. Who the fuck cares what i ate for lunch, but i lied and couldnt stop myself. So just fuck off if you think i can control this shit.

I see you disabled people who don't know your family medical history because your family members couldn't/wouldn't/weren't allowed to go to the doctor and never got diagnosed, or don't know your family.

I see you disabled people who didn't know you were disabled growing up, physically or mentally, maybe because your parents didn't have insurance and couldn't afford it/wouldn't take you seriously/didn't think it was a problem because they had it/doctors couldn't figure it out.

I see you disabled people who have bouts of an issue that you grew up with, that are/were infrequent enough that you never really thought about it and dealt with it on your own, and when you have one in front of people who weren't medically neglected, you wonder why they look so horrified as you describe it.

I see you disabled people who didn't/haven't had any amount of care or accommodation for their disability since it started, because you couldn't get diagnosed.

I see you disabled people who grew up thinking everyone had the same problem as you and that it was normal and so you accepted it, because you didn't understand how the human body worked and had no real frame of reference nor the language to ask for help, or the people around you saw it and just ignored it.

I see you disabled people only now understanding that what you experience is abnormal, and that there are things that can be done to help it, make it easier, or at least help you understand yourself better.

I see you disabled people that will never be able to get diagnosed or get the help you need, whether from being poor, lacking insurance, or any number of reasons.

This shit is hard, and there are people who will never quite understand your struggles. It doesn't seem to get talked about as much, but I wish it was. Please know I love you, and you aren't alone.

Just a reminder that ableism against personality disorders, especially cluster b personality disorder, is alive and well.

Not having empathy doesn’t make someone evil. It doesn’t make them an abuser. In fact, people without empathy are better in certain vital positions. We’re better at being first responders, 911 operators, and other tasks that would overwhelm empaths. We work better in critical situations than empaths do.

Thinking that any disorder makes someone evil is ableist. And when you take into account the sexist bias in diagnosing women with BPD and the racist and classist bias in diagnosing POC and prison inmates with ASPD and NPD? It’s not only ableist, it’s all kinds of -ists. Plus, it’s really rich for someone who claims that empathy is what makes someone good to have so little empathy for people with disorders that are literally trauma-based.

So yeah if you see someone being a dick to people with PDs? Say something. Because they’re definitely not going to listen to us.