powerchairpunk

he/him, cripplepunk severely disabled and chronically ill

[powerchairpunk]

hi, i am @powerchairpunk (previously @servicedogpunk) and this is my blog.

i am a physically disabled adult who uses he/him pronouns. i am a full time power wheelchair user and former service dog handler.

servicedogpunk

[powerchairpunk]

made a backpatch for my powerchair. hand studded, sewn, and stencil is my original art.

[powerchairpunk]

there is a lot of negativity online surrounding the bulkier, non-foldable powerchairs, so i just wanted to share an alternate perspective, as someone who recently became a group 3 power wheelchair user.

folding powerchairs can be great for some people, especially part time wheelchair users. they fit more easily into tight spaces, can be transported without an accessible vehicle, and are significantly more affordable.

but some of us need more support than a folding powerchair can provide. custom powerchairs are built specifically to meet complex needs. some may include power functions to mitigate complications that full time wheelchair users face. these chairs are better quality, easier to find technicians for repairs or maintenance, and more comfortable to use for long periods of time.

so, why do so many full time wheelchair users opt for folding powerchairs? it’s the same reason that many people who need rigid frame, custom manual wheelchairs use cheap hospital chairs. something is better than nothing, and custom wheelchairs simply aren’t environmentally or financially accessible to most people.

it’s really a shame, as the importance of using the mobility aid that’s most suited to your needs really can not be overstated. custom built wheelchairs should not be a luxury. they should be available to anyone that needs them.

[powerchairpunk]

I dunno if it's an intentional choice you're making (and if so, I'd be genuinely interested in hearing your reasoning), but just so you know, it's typically seen as best practice to *not* include alt text for images which are purely decorative (like the borders on your posts) according to the web accessibility initiative: w3(.)org/WAI/tutorials/images/decorative. If you were coding directly, they recommend putting "" so that screen readers know to skip the image, but im not sure if that'll work on tumblr. They actually recommend limiting alt text significantly more than I see folks doing on tumblr, because screen-readers going through extraneous descriptions can make it harder to parse the actual important information.

thanks for letting me know! i used to see a lot of comments white-knighting on behalf of visually impaired users, so i assumed detailed image descriptions were standard practice.

that resource is super helpful, i will be using it to shape the way i write my image descriptions from now on. sharing this to my blog as well, for others trying to make their posts more accessible.

[powerchairpunk]

this is a found object sculpture i made about my service dog’s early retirement. i have failed many times just trying to find the words, so for now, the art will have to speak for itself.

what i will say is that my service dog is alright. the physical issues causing his retirement are mine, not his. he is in good health and, thankfully, gets to stay with me.

i won’t pretend that everything is okay. i am still mourning the future i had planned for us. but i am grateful that i am in a position where i can make the decision that is best for me and my dog.

[powerchairpunk]

new banner and meet the artist!

[powerchairpunk]

medblogging about something that happened a while ago, but i haven’t had the cognitive energy to verbalize until now.

i had an mri several months ago. i was told my results came back fine, and that i had no structural issues or tumors, so there was nothing to worry about. i moved on, and i had no reason to think about it again until recently.

i was going through my provider notes and found they had noted benign intracranial hypertension. i looked back at the my results, and it was there in the report. multiple of my diagnoses have links to increased pressure in the brain.

im still not really sure how to feel. i have always struggled with my neurological disabilities, and the fact that there was no physical proof. so finally having visible evidence of these symptoms is vindicating. but it also makes me sad how long i had to struggle just to prove my pain was real.

[powerchairpunk]

if it seems like i am posting a lot about retro web design and graphics right now, that's because it is a special interest of mine that i was unable to engage with for a while until very recently. when my me/cfs went from moderate to severe, i had very limited ability to tolerate screens and coding was just too much cognitive exertion.

i am still not completely back to my moderate baseline, but since i went on leave from work i have been able to do more things. i am still severe by funcap standards, but more moderate than i was.

it's also why i have been posting on here a lot- i went through a period where my cognitive dysfunction was so bad, i struggled to communicate my thoughts verbally or in writing. so, now that i am able to do that again, i am taking advantage of that ability

[powerchairpunk]

my favorite web stamps. none are mine, just resharing here to avoid hotlinking. comment or dm for credit or removal

[powerchairpunk]

my fav 88x31 buttons. none are mine, just resharing here to avoid hotlinking. comment or dm for credit or removal

[powerchairpunk]

organ and bodily related icons/pixels. not mine, just archiving here to avoid hotlinking to other people's websites. (happy to provide credit or takedown if requested.)

[powerchairpunk]

miscellaneous graphics/personal site buttons i made for my site!

[powerchairpunk]

custom power wheelchair function gifs. art and animation by me. free to use, either with credit or by linking back to this post.

features displayed (in order) are power seat elevator, power tilt, recline, and leg lifts.

[powerchairpunk]

do you consider schizophrenia (and other schizospectrum disorders) disabilities?

short answer, yes, they are disabilities. but there are people with these diagnoses who do not consider themselves disabled.

that’s true of a lot of disorders that present on a spectrum. so, it would be factual to state that schizospectrum disorders are disabilities, but not that everyone on that spectrum is disabled.

[powerchairpunk]

reminder that there are many physical disabilities that involve the brain. disorders can be both neurological and psychiatric, but they are two separate categories of illness.

in discussions about brain dysfunction, people usually think of neurodiversity and mental illness. neurological disorders that are primarily physical are often left out of the conversation entirely.

many neurological conditions are not psychiatric, and treating the two as synonymous is denying the lived experiences of a large percentage of the physically disabled population.

[powerchairpunk]

the line between visible and invisible disability isn’t as clear cut as some people make it out to be. the definition of what makes someone visibly disabled depends heavily on who you ask.

for example, most people consider full time mobility aid users like myself to be visibly disabled. but many of us are using visible disability aids to treat invisible symptoms, and that’s when it starts becoming harder to separate us into a single box.

i can relate to having my need for accommodations questioned because my disability isn’t immediately apparent. but i also understand why visibly disabled people are insulted by the implication that we have our support needs more easily met then those with invisible disabilities.

i think these labels are frequently used to divide our community, when the reality is nuanced. both visibly and invisibly disabled people experience individual forms of ableism.

[powerchairpunk]

it shouldn’t be taboo to admit that there are disabled people who are more or less disabled than you.

i consider myself mid support needs. i am in pain every day of my life, all the time, and am significantly impaired by that. i can’t work full time. i require significant support to get through the day. i need my service dog to function properly. i can’t live alone, at least not right now. i can’t effectively mask my autism.

but i still have privilege over other disabled people. i can walk. i don’t have to worry about wheelchair accessibility when i travel. i have no visible deformities or intellectual disabilities. i am verbal.

some people are more disabled and others are less disabled. it’s okay. it doesn’t mean that you’re not valid or that you don’t deserve help. it just means you do not have the exact same needs as someone else.

[powerchairpunk]

it’s weird looking back at this post after so much has changed.

inability to work full time has turned into inability to work at all. dependence on my service dog has turned into retiring him early because i am too sick to work him. ability to walk has turned into severe mobility impairment.

all in less than a year. all because i continued to push through symptoms instead of listening to the signs that my body was failing.

and yet, i still agree with a lot of the things i said in this post. i would now consider myself severely disabled, but there are still people with my diagnoses who are further on the scale of severe disability than i am.

me is a complex illness that ranges from mild to profoundly severe. i am grateful for what abilities i do still have.