Please don't use/repost pictures of my AAC without my explicit permission.
Do not use tone tags/indicators with me, I don't understand them. If you must indicate tone, please do so with full and simple words (I.E. "That's awesome (sarcasm)").
I will not answer "Do you think I have [x]?" questions. I support informed self-diagnosis, but I will not diagnose you.
I am strictly anti-endogenic and you will not be able to change my mind about this, I will not entertain your debates or discourse. Similarly, CDDs are inherently disabling and there is no such thing as "non-disordered systems."
I believe in uplifting M/HSN, lvl 2/3, low/no-masking, BIPOC, intellectually disabled, and/or nonverbal/semiverbal Autistics, as well as Autistics who are part of other minority groups. This does not inherently put down LSN, lvl 1, high-masking Autistics.
I like the puzzle piece as a symbol for Autism. I understand that many others don't and I respect this, but please respect my decisions to use the puzzle piece in return.
Cripple and cripplepunk are for physically disabled people only.
Highly critical of psychiatry as a system and institution.
Pro-legalization & decriminalization of cannabis possession and use for medical, recreational and spiritual uses. Also pro-harm reduction, including the use of weed for treating addiction.
People with skin conditions deserve better. People with acne, eczema, psoriasis, hidradenitis suppurativa (HS), and other skin conditions do not deserve to be treated like we're contagious or an eyesore. We deserve to be in public and show our skin and not feel ashamed because there is no shame in having a medical condition. We deserve to be free from insensitive questions and unsolicited advice. People with scars, including but not limited to those from burns, surgery, self-harm, injury, illness, and acne also deserve to live life without worrying about rude comments and questions. Don't comment on people's skin, especially strangers'. Even if you think you're being tactful.
I keep seeing people put accommodations for people with epilepsy on the same level as sensory accommodations for autism and like... no??? Obviously both are important but epilepsy can kill people, SUDEP is a thing. If you expose someone with photosensitive epilepsy to strobing lights they could suffer permanent brain damage or die. Epilepsy is a condition with physical, sometimes deadly consequences. I'm not sure how many different ways I need to say this before it sticks, but epileptic seizures are physical neurological phenomena that can cause lasting neurological damage or death. Epilepsy can kill you. You can die from epilepsy.
Some tips for identifying a reputable source of information on medicine
I've had many people link to things that are not scientific sources when I ask them for a source on their information. identifying reputable sources can be difficult so I'm sharing some of the key criteria I look at. there are lots of guides online to evaluating reputable sources, this is just what I look for.
is this source published in a scientific journal?
ideally, the source you are linking should be published in a scientific journal. there are lots of search engines that can help you find scientific journals. the main one I use is scholar.google.com but others exist if you don't want to use google.
it's especially good if you can find the article you're looking at published in a well respected journal. not all scientific journals are created equal. doing some searches about "is [journal] reputable?" can often pull up any glaring issues with the journal.
2. if the article is not published in a scientific journal, does the article cite scientific journals?
sometimes journal articles can be filled with a lot of jargon. this can make it difficult for many people to understand. this leads to people going to articles as sources. if you are looking at an article as a source, that article should have specific citations included in it. an article without citations can be entirely opinion-based and you'd have no way of knowing without links to journal articles.
3. if the article is not published in a scientific journal, does the author have a degree in a relevant field?
anyone with a PhD/other doctorate degree can stick "Dr." in front of their name. this doesn't mean they have the qualifications to write the article they are writing. on most articles you can find the specific degree the author has at the bottom of the article. sometimes that person's PhD will be in history, not a medical-related field.
4. if the article is not published in a scientific journal, where is it published?
some publishers are more reputable than others. you generally want to avoid blog posts as anyone can write those and anyone can claim any degree in those posts. science-oriented curated webpages will often have more reliable information- though they are often still full of misinformation.
if your article is failing any of these tests then it is not reputable.
additionally, not all journal papers have valid science behind them. there are journal papers that suggest that tylenol causes autism. just because something is published in a journal or links to journal papers doesn't mean it's correct. be mindful of this when sharing any information, even if the source seems reputable.
can we get some rollator and walker appreciation đŁïžâŒïž i see a lot of cane and crutch and wheelchair appreciation but where's the love for rollators and walkers âŒïžâŒïžâŒïž
Happy disability pride month to severely disabled people who are housebound/bedbound
happy disability pride month to severely disabled people who donât have access to proper treatment or medical equipment, and are stuck without care that would ease symptoms or make their life easier
happy disability pride month to severely disabled people who wonât be getting better, and who will be getting worse, or who will be dying due to their conditions
happy disability pride month to severely disabled people with photosensitivity who canât look at screens for long, and feel even more isolated by not being able to interact with much the disability community, even online
happy disability pride month to severely disabled people who arenât happy to be severely disabled, but are happy to be alive
this disability pride mouth i wanna shout out my fellow level 3 autistics, people with severe mobility impairments, people with cognitive and/or intellectual disabilities, and others who need full time care from a caregiver. sometimes it feels like a taboo to talk about not being able to do essential daily living tasks by yourself, or needing someone to take care of you because you can't, but i think there's beauty in the way people care for one another and there isn't any shame in needing help, even if you need that help lifelong, or for a lot of "basic" seeming things!
I think the thing that bugs me the most about using AAC is the fact that most AAC prioritizes efficiency and speed over personal expression. Of course I don't think this is by design or is intentional, but it is a side effect of the general public not really knowing how to interact with AAC users and expecting us to match their verbal speed. So instead of being able to communicate the way that I want to communicate, using AAC feels like a constant uphill battle of trying to get my words out as fast as possible, lest the other person becomes impatient.
It sucks because I'm generally a very articulate person. I like using words in ways that feel very personal to me, and I'm sad that using AAC makes me feel like I'm being stripped of my ability to express myself fully in that regard. Which is why I wish it was possible for me to just force my way out of my speech impairments-- I'm aware that's not possible, but I know myself and others around me get very tired of my deficits. Every day I wish that solving this was as simple as just "speaking more to get better at it," but it's not, and it feels like I have no good alternatives.
This is something I still find myself struggling with. I continue to realize just how much AAC is not a sudden, overnight, magical fix for my communication struggles, and how it is a learning process for the AAC user and everyone the AAC user communicates with. I can't stop prioritizing and forcing speech over reaching for and using AAC due to it being much slower than speech (especially when one is still new to using AAC, still needing to fully familiarize themselves with using their AAC and that's if they don't change things around constantly to try and figure out what is best for them). And the pressure I feel from communicating with others to use my AAC fast enough doesn't help.
I can't stop feeling how inconvenient AAC actually is and can be sometimes because of much it does not match verbal speech speed. I can't actually be fully articulate, can't actually take the time I do need in order to process the other person's words, think, and then put my words together with my AAC (which is the time I need when using mouth words anyway), and it's just beyond frustrating.
I keep wondering how I can make it easier, but I am just so tired of having to teach others, so tired of being the only person around me/in my life who understands this exact struggle. It makes me wonder if AAC is even worth it, which is a shame because I love my AAC, I love being an AAC user. Literally these days I have been sometimes wishing that I could just speak without any issues, but speaking as primary communication is just not me and has never been.
i feel so defensive and protective of people with ARFID like if i had a disorder that made my brain register 90% of food as poison for no reason and i had a bazillion people on the internet constantly calling me a manchild who needs to just grow up and stop being a picky eater i would start killing people
people with ARFID and people with very few autism safe foods and people with contamination OCD and people in ED recovery and everyone else with a complicated relationship with food that no one takes seriously GET BEHIND ME!!!!!!!
I think the thing that bugs me the most about using AAC is the fact that most AAC prioritizes efficiency and speed over personal expression. Of course I don't think this is by design or is intentional, but it is a side effect of the general public not really knowing how to interact with AAC users and expecting us to match their verbal speed. So instead of being able to communicate the way that I want to communicate, using AAC feels like a constant uphill battle of trying to get my words out as fast as possible, lest the other person becomes impatient.
It sucks because I'm generally a very articulate person. I like using words in ways that feel very personal to me, and I'm sad that using AAC makes me feel like I'm being stripped of my ability to express myself fully in that regard. Which is why I wish it was possible for me to just force my way out of my speech impairments-- I'm aware that's not possible, but I know myself and others around me get very tired of my deficits. Every day I wish that solving this was as simple as just "speaking more to get better at it," but it's not, and it feels like I have no good alternatives.
i wish there was more social existence you could participate in laying down. I wish there were cafes that were two little futon beds parallel to each other with a low table in between so you could eat and drink while lounging. I wish there were group activities like painting or glazing clay or theaters that were designed to have beds and bed-height tables instead of chairs. I wish there were beds alongside benches outside for anyone to use. I wish air mattresses or roll-out beds were as common as cheap shitty chairs at things like barbeques, beaches, and concerts. so much life would open up to me and be enjoyable if I could lay down instead of sitting or standing for prolonged periods and completely wearing myself down with pain.
the âsexy lamp testâ but for disabled folks: if you can replace your disabled character with a beloved pet dog that needs an expensive surgery to survive then you have to throw out your manuscriptÂ
Iâve never understood disabled people whoâve gotten better and then use that to shame others for ânot trying hard enoughâ or to peddle snake oil-esque âcuresâ
Iâm a disabled person who went from struggling to even just sit upright for a few hours a day (orthostatic intolerance) to being able to go for 1mi long walks spontaneously, and I never forget how lucky I am. it is by the whims of luck that Iâm responsive to the meds Iâm on and the lifestyle adjustments Iâve made
nothing works for everyone and some people wonât get better, and that is not a failing on their part. being âactiveâ in your treatment and level of personal involvement are not the only determinators in outcomesâmuch of it is luck
driven mad by how patients with severe ME are so rarely warned or protected from some of the most obvious consequences of ME bc doctors just donât gaf about us. so hereâs an awareness post. side effects of ME to look out for:
pressure sores from being in bed all day - to prevent these, change position minimum every 2hrs if possible, and use pillows to support your positions (find visual examples online). youâre especially at risk of pressure sores if you use continence products, so make sure to use a barrier cream and change as soon as possible when soiled.
contractures, especially in the ankles, from being immobile in bed - these can be minimised by doing ankle flexibility exercises, but ONLY if that would be within your energy envelope. otherwise just try to vary your ankle/foot positions. support with pillows if needed.
tinnitus and ear infections from having to wear earplugs so much - i have no advice for this
vitamin d deficiency from being indoors in the dark all the time - supplements and foods rich in vit d can help.
deep vein thrombosis aka blood clots in the legs from immobility - this is uncommon but itâs an emergency if it ever occurs. compression socks can reduce your risk if you can tolerate wearing them, and movement also helps lower the risk, but again, only within your energy envelope.
muscle atrophy - your legs and arms may start to look like sticks after becoming bedbound. unfortunately, as long as exercise is unsafe for you, this is impossible to fix, so itâs something we have to accept, as pushing ourselves is much more dangerous than deconditioning.
vit and mineral deficiencies from dietary restrictions - opt for a healthy diet, supplementation, and regular blood tests to stay on top of deficiencies
dehydration from being unable to sit up to drink - there are sporty contraptions meant for backpackers that let you drink lying down. some water bottles with sports caps also work, i use refilled lucozade bottles for all my water. if youâre too weak to swallow for longer than a day, itâs time to call a doc to see if they can give iv hydration.
dehydration from sleeping a very long time - if you sleep 16+ hours, especially if it happens regularly, youâre probably waking up dehydrated. try to drink water when you wake.
there is a theoretical option of something like a dedicated aac device with an attached keyboard. something like a phone/tablet with tts features can be connected to a physical keyboard where you can type directly on the device then hit a speak button. its not something prescribed (at least not typically) but something like that could be worked on either at home or with help from an slp/ot. there may be dedicated aac laptops, that wouldnt surprise me but if you can save the money you could make practically any device with a tts feature into a dedicated aac device. some devices have enough ports to connect both a keyboard and a speaker not via bluetooth but honestly any ports besides a charging port is getting rarer. i got rambly there, sorry. i hope i got my point across
No worries this is really good information, thank you so much. I did end up finding this Logitech wired keyboard for iPads that I might consider getting soon. A bit out of budget right now ($80 CAD...) but next time I get money in I'll be sure to save some for this.
One of the most fucked up parts of Americaâs for-profit medical system and insurance often being tied to your work is that you cannot work if you are sick and if you are not working, you have no insurance. People are fired in the middle of cancer treatment or a severe mental health episode and suddenly there is no way to pay the hospital and buy the medicine you need. Republicans will outright say âYou donât deserve free healthcare if youâre lazy and unemployed.â anytime someone mentions this, actively ignoring the fact that you often cannot work when you are sick and shouldnât be forced to work when youâre sick to be able to afford to get better.
people with downs syndrome, i'm so fucking sorry about all the bullshit y'all have to deal with in this ugly hateful world. i hope everyone treats you like an adult with agency for the rest of your life and that you won't be the butt of a joke anymore. i know that's sadly not a realistic thing to hope for, but i hope for it nonetheless.
