this is a cripple punk post [also focusing on all kinds of HSN disabled folks]; ableds must tag reblogs with #i’m able bodied

for the record

i generally shower exactly once a week & wash my hair the same day

sometimes i can’t change undergarments for a few days, sometimes i change them multiple times a day

i rely on several adaptive tools to shower, period

i do need to shave/trim pubic and body hair for my hygiene, and can’t keep clean otherwise

in winter, i often can’t wash my hands unless i have lotion with me or they’ll crack painfully

i change clothes once or twice a day to make up for most of this the best i can

i’m saying this because all of those things are very common issues for many disabled people (especially high-support ones), and because i feel like if i’m going to talk about destigmatizing hygiene struggles, i should at least be open about my own.

hygiene is very difficult and energy consuming. it involves a lot energy that many of us can’t access.

not being able to maintain one’s personal hygiene doesn’t make anyone selfish, disgusting, or undeserving.

if you can’t be kind and supportive and not say “ew” when you hear about one of the most common impairments moderately to severely disabled people experience, you don’t support disabled people. if you don’t support disabled people who smell bad or have dandruff or cracked hands or un-exfoliated skin, you don’t support disabled people.

yes, even if you have sensory issues. yes, even if you’re germaphobic. your disabilities are not an excuse to be ableist to others. find a way to be kind anyway.

She still refers to is a autistic burnout, but I know there are a lot of people in the autistic community who want to move away from the term burnout, including me. I can it neurocognitive decline. There is no set term for it right now though. But it's tough going through it. Some people take it seriously and I'm seriously thankful. There are other people I know who don't take it seriously... and that had been exhausting to deal with.

oh my god pegs i really dont know what to say. i'm so sorry abt the fibro! i'm glad u were finally listened to by the doctors at least + v glad u were able to get home, i hope u can rest at least a little now! really really hope things calm down soon so u can have the time to process everything, sending love <3

hi <3 ily, thank u so much for the support!

i'm back home now and kinda ... adjusting to having a lot of empty hours to fill ... but i'm setting goals and trying to make the most of my time off from work! AKA figuring out how to balance rest/activity and working on my coping skills, attempting to get back to hobbies, etc :) it's gonna take a few months but oh well. life is not a race!

I've been running into a lot of problems with the co-farmer (who is also my legal caregiver) where I am, due to degenerative illness, frequently cognitively impaired in a way where I am not only unable to remember things and make thought-out decisions and communicate well, I am also unable to accurately assess how cognitively impaired I am and will insist that I'm totally fine. Which is interpersonally difficult, especially when the consequences of me overestimating my cognitive ability are often severe and impact both of us, not just me

I am fiercely defensive of my right to make my own choices even if they seem insane and self-destructive to other people, and I chose the co-farmer specifically because I was very obviously unable to survive without a caregiver but wanted to keep my autonomy & knew she would let me have that. And she has. I am free to make whatever life choices I want. But there's a murkier area where I'm often NOT making life choices based on what I want, I'm making choices because I'm confused and disoriented and don't really understand the options or the consequences my choices will have. But in the moment I don't and can't understand how much I don't understand, and I get angry and distressed if you try to explain it to me, because it feels like I'm fine and understand everything perfectly and you just don't trust me.

It's a difficult and upsetting thing to navigate, and it's a weird thing to have to navigate when I'm 23 years old and this sort of thing is only really talked about in the context of "how to deal with your senile grandparent who doesn't want to move to a nursing home". There's not really a road map to follow here. We're just trying our best to not traumatize each other too badly

guess who officially got diagnosed with a neurocognitive disorder 🙃🙃

One of the hardest parts of being the caregiver of your spouse is finding the balance between those two roles. How do you fulfill the role of wife and also be a full time caregiver without blurring the lines? You don’t. You can’t. It’s impossible. Does this interfere with intimacy at all? Yes. Does it make it impossible to be intimate? No. It’s tough for me personally to keep the spark sometimes because cognitively, due to the PPMS progressing so fast, Josh is not able to think too deeply. He had a very surface level grasp on most topics and gets confused easily. His processing speed is very slow and it takes a lot of repeating for him to finally comprehend what I say, often times. This makes it difficult for me to feel connected because I am someone who thrives off of deep conversations. Something we used to be able to have. I’ve learned to accept what I cannot change though, and find the deeper conversations in my friendships, and be grateful for everything else I share with him. MS is a bitch… but you can do what you can to live with it and find the good in every day.

Hey! So I've wanted to conduct some polls on more "obscure" disorders that aren't usually mentioned, but I also want to ensure I'm at least going to be getting some data, soooo:

*NeuroCOGNITIVE disorders (delirium, frontotemporaral neurocognitive disorder, neurocognitive disorder due to HIV infection, etc.), not neuroDEVELOPMENTAL (ADHD, autism, etc.)

Disorders that fit into these categories are listed below, if you're not sure where one of your disorders fit (note this isn't totally comprehensive, I recommend looking it up or sending an ask if you can't find a certain disorder you're confused about on this list):

Neurocognitive Disorders: Delirium, otherwise specified/unspecified delirium, neurocognitive disorder due to _____, substance/medication induced neurocognitive disorder, vascular neurocognitive disorder, neurocognitive disorder with lewy bodies, frontotemporaral neurocognitive disorder

Elimination Disorders: Enuresis, encopresis, otherwise specified/unspecified elimination disorder

Sexual Dysfunctions: Erectile disorder, delayed ejaculation, substance/medication induced sexual dysfunction, male hypoactive sexual desire disorder, female sexual interest/arousal disorder, otherwise specified/unspecified sexual dysfunction, genito-pelvic pain/penetration disorder

Disruptive, Impulse-Control, & Conduct Disorders: Oppositional defiant disorder, intermittent explosive disorder, conduct disorder, antisocial personality disorder, pyromania, kleptomania, otherwise specified/unspecified disruptive, impulse-control, & conduct disorder

Somatic Disorders: somatic symptom disorder, illness anxiety disorder, conversion disorder, psychological factors affecting other medical conditions, factitious disorder (imposed on self/imposed on another) sometimes referred to as "munchausen syndrome", otherwise specified/unspecified somatic symptom and related disorder

unfortunately i do think a placebo would work wonders on me

…

this is a cripple punk post [even if it also applies to nonphysical disability]; ableds must tag reblogs with #i’m able bodied

actually tagging my last post reminded me--

if you're making a post about a disability you don't have, for fucks sake, please make or use a modified tag that IS NOT a community tag.

i get that you want to sort topics and make them easier to find on your blog or whatever, but if you misuse tags you are actively making it harder for people to find community.

avoid using just an asterisk or backslash or similar to modify the tag--these tags are usually even more explicitly for the community than the disability's unmodified tag is.

my personal go-to is 're: x', like, 're: intellectual disability', and i think ive seen 'includes: x' for fiction stuff. basically anything works if it's not used by the community. for some disabilities, you're fine just using the name of the disability as a tag, but for many, the name of the disability is the community tag. this is especially common, in my experience, with disabilities that affect cognitive/intellectual/neurological functioning. please err on the side of caution.

please, please, i am literally begging you, let disabled people have our spaces. a huge part of why i made this blog is that the tags relevant to my main disabilities are totally overrun by nondisabled people and "allies." it fucking sucks and does massive damage to disabled people--and i mean that very literally.

POETRY, PASTRIES & PIES PODCAST: Poet Anna Ehrenman Discusses Neuroscience and Poetry

POETRY, PASTRIES & PIES PODCAST: Anna Ehrenman Discusses Neuroscience and Poetry #STEM #PoetryPodcast #NeurocognitivePoetics

Photo image used with permission from the author I have been investigating the use of neurocognitive methods on the grounds of whether they are structurally and functionally valid in the world of poetry. So today, I have the pleasure of sharing my interview with Anna Ehrenman, a current senior at the University of Virginia and author of the book, “The Almond of my Mind” (The Poetry of…

View On WordPress

when im reading an article about dreams and they reference a dream book i have >:3

Sidewalk

by Richard Siken

I crawled to the front door and swung it open so the ambulance could find me. It seemed like a strange thing to do, since I hadn’t called for an ambulance, so I crawled to the end of the sidewalk and sat there, which still didn’t make sense. All the condos look the same, so it was going to be difficult to find me if the door wasn’t open. There was a noise in my head and I couldn’t afford an ambulance so I called a friend to come and get me and he wasn’t happy. It felt weird. I went back and locked the door and stood in front of the house to wait for my friend but I wasn’t standing in front of the house, I was lying on the sidewalk with my face in my shoulder bag because I couldn’t stand up and I was afraid it would scare my friend, so I rolled on my side and propped myself up with my weak arm while my legs sprawled out behind me. I held my bag tight to my chest and tried to look casual, with my crooked smile and unfocused eyes. It was hard to keep my head up but I kept smiling at the pavement and the blurry middle distance until I could see the wheels of a car and my friend’s shoes. I felt like I was running to him but I wasn’t moving. The trees were tall and fast outside the car window. I kept apologizing. It was clear that something had happened that wasn’t going to unhappen. In the emergency room, the woman at the desk kept asking me questions. All my answers were stroke, dizzy, numb. I kept saying the words in different ways so she would understand. She didn’t. She didn’t believe me. They put me in the waiting room, which I knew was wrong, and I realized that I had messed it up because I didn’t call for an ambulance. I kept falling asleep in the waiting room. I looked much worse, slack and crooked, the two sides of my face moving at different speeds. I went back to the desk and said help. They put me in a room. No one believes that I know what I know because sometimes I miss a part or tell it sideways. Some people get stuck on the first thing you say and they don’t let you finish your syllogism. They asked the wrong questions. I gave the wrong answers. They thought I was faking it. I said numb. I meant getting numb, more numb, half of me mostly numb. They said  Lift your leg. I did, a few inches. It was heavy, they were mad. You aren’t paralyzed. They kept missing the point: none of this was normal. I was making strange and ambiguous gestures. I was trying to tell them about the door and the ambulance and the sidewalk. The intern on duty—I never got to see a doctor—decided I was having a panic attack and discharged me. Someone wheeled me to the curb. A different friend helped me into a car.

Actually, in terms of eerily perfect metaphors, I'm definitely Scanners.

Happy disability pride month to:

Physically disabled people

Mentally ill people

Mentally disabled people

Neurodivergent people

Psychotic people

Multiply disabled people

Visibly disabled people

Invisibly disabled people

Mobility aid users

People with chronic pain

People with chronic fatigue

People with neurodevelopmental disabilities

People with neurocognitive disabilities

People with intellectual disability

People with neurogenic disability

People with cognitive disability

People with motor disorders

People with rare disabilities

People with common disabilities

People who were born with disability

People who acquired a disability/disorder later in life

People with bodily differences

Nonverbal people

Semiverbal people

People who experience speech lose

AAC users

People with ‘gross’ symptoms

People with sensory disabilities

People who aren’t sure if they are disabled

Disabled people who don’t know they are disabled

Disabled people who want treatment

Disabled people who do not want treatment

Disabled people with disorders that ‘don’t match’ their assigned gender

Zebras

Spoonies

Cripples

Happy Disability Pride Month to all disabled people!

May your tomorrow be kinder than today.