Adonis @crippled-punk-guy - Tumblr Blog

Introduction and Overview

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My name is Adonis, he/him.

All disabled people are welcome, but this blog is specifically for and about physical disability.

*this is a side blog, I do not follow from this page*

HSD/suspected EDS type 2, Functional Movement Disorder with Functional Paralysis, POTS, cardiac arrhythmia, multiple physical deformities, osteoarthritis, degenerative disc disease and the like. Other things I choose not to share, may be mentioned when applicable.

Full time wheelchair user waiting on adequate equipment.

College student majoring in education

I’m an artist and activist associated with an organization in the Midwest US

Living as a disabled queer in a red state with my lovely disabled boyfriend.

Marvel fan, medical nerd, ball python and cat dad.

Asks are currently open but I don’t promise a response, apologies for any genuine questions that are unanswered.

I do my best to describe images and use proper spelling in my posts but I am dyslexic so if anything doesn’t make sense please reach out and I can attempt to clarify.

Pagan in the way your mother warned you about

#disability #wheelchair user #crutch user #hypermobility spectrum disorder #disability activist

I would like to share that after a very, very long time I am finally getting my powerchair.

This comes with a lot of emotions, especially given the circumstances around it being considered absolutely necessary now. I have been in that category of "would heavily benefit but can technically survive without it" for a while now and it's been known for years this would be the outcome but it actually happening is a whole different story. It's no longer something I think about with the context of "wouldn't that make my life easier" and instead it's "won't it make my life possible?"

I'm very nervous but also excited. It will have tilt, recline and all that fun stuff.

That being said I don't know how much I will be active on this blog in the coming months. I have been dealing with so much for the last few years of my life and this blog has been a coping tool for that; and this is very much a light at the end of the tunnel moment and I hope to soon have much less to cope about.

Thank you all for your interaction with my posts, it has really meant a lot to have my voice heard. I do not get out much because of my issues, so social media has been my main interaction with other people for a while. But things are opening up to me now. I was invited to join the honor's society at my college, I have a job position lined up with a very flexible schedule for a group I'm excited to work with, I was able to get some movement in my legs after three months of no voluntary movement at all during this week's PT session, and I am finally going to have a wheelchair that will actually work with me instead of against me. I feel it is so important to stress, I was diagnosed with the condition that requires this tool nearly nine years ago, and I am just now about to get it. Sometimes I am still the little kid sitting in that office being told it can't be fixed; having evaluation after evaluation where everyone acknowledges it's getting worse but does nothing to help. Fleeting mentions of "more support" but nothing coming of it. I wish it did not take this long and I wish someone had advocated for young me. It is possible I would have more function now if I was using this sooner, as a preventative sorta thing, and I try not to be angry that I had to get so bad before someone finally listened.

With that, I hope to be less active here. I am off to be part of the world again.

May all of you have access to the tools you need.

#physical disability #powerchair user #wheelchair user #skeletal deformity #neurological disability #personal #tw medical gaslighting #kinda idk feel like I should add that #cripplepunk

kazsurvives-deactivated20260327

Science needs to invent rugs that aren’t accessibility nightmares.

#OK SO OTHER PEOPLE HAVE THIS PROBLEM TOO #I NEVER SEE ANYONE TALK ABOUT IT #BUT ITS ONE OF MY BIGGEST ANNOYANCES #I was starting to think I was just doing something wrong

briarpatch-kids

I really don't know how to tell people that no actually, there is a big meaningful difference between "I'm not at all capable of this" and "I can do this in a pinch but it will hurt the whole time and after."

Those "in a pinch" situations really suck when you can't do the thing at all.

Yall my wheelchair is broken AGAIN

Some of you may remember the saga with my old manual wheelchair and part of the seat to backrest connector being broken. Because of this and the fact that it wasn’t well fit to my body in the first place I got a new one last year. Well my newer one is broken, this time on just the backrest connector that holds it to the frame. As I type this it is sitting next to me with ribbon tying it together.

Why am I using my manual and not my scooter? My scooter is old as fuck and second or maybe even third hand; I can barely find information about it online that’s how old it is. Because of this it makes a weird noise while it’s moving that I already don’t trust a lot, plus it doesn’t have great brakes anymore so it shifts when I try to transfer. It works but it feels like a disaster waiting to happen so I’ve just been using my manual and struggling.

All of this plus the issues I’ve been having with pressure injuries lead me to the point that I need a new wheelchair AGAIN

I am so sick of this shit dude

#wheelchair user #literally just want useable equipment is that really too much to ask

It’s really frustrating to be in the limbo of requiring different equipment than what you have but being forced to rely on the option currently available

#disability

wheelchairtetris

wheelchair users deserve a minimum of three wheelchairs to meet different needs. like, bare minimum of indoor chair, outdoor chair, and off road chair. chairs that meet different needs for transport, activity, positioning needs, energy levels, etc.

there is not "one chair" that can meet every need. wheelchair users deserve to have multiple chairs that meet specific needs, no matter how complex their seating/positioning needs. we deserve to at least have a backup if our chair breaks that is just as suited to our needs.

wheelchairtetris

wow this blew up

for anyone who doesn't know, wheelchairs are very expensive and insurance will usually only cover one every five years or only cover a new one if your needs have changed significantly. the expense is especially true for anyone who has complex positioning needs (i.e. requiring tilt/recline/elevation in power wheelchairs, general group 3 power wheelchair needs, one arm drive for manual wheelchairs, etc.). as with so many disability related issues, those most impacted by their disability are most at risk of harm when adequate support is out of reach.

this post isn't a joke about how we deserve more for being disabled. this is a very real issue for many wheelchair users, for whom using a wheelchair not suited to their needs can cause very real harm. access to multiple wheelchairs that meet your needs can save lives, and the financial limits placed on disabled people (through insurance, through savings caps, through limited income) prevent that from being our reality!

solusprime987

When most people talk about their ideal, perfect world they talk about money or holidays or buying a new house.

My ideal perfect world would just be having multiple chairs that don't require me to sell my kidneys to afford and a world accessible enough to use them <3

#I’ve literally been waiting years for an adequate wheelchair #my progressive condition has gotten worse in this time and my needs still aren’t being met #yes it is considered medically necessary and yes they still deny it #they deny people medical necessities all the time

expectedadult

god never designed a better torture than a sick body with an ambitious mind

Pressure sores cannot hurt me because I am pure of heart

#citation needed #wheelchair user #physical disability

wheelie-sick

manual wheelchair users being asked why they don't "just use a powerchair" 🤝 powerchair users being asked why they don't "just use a manual wheelchair"

these are different aids that have different pros and cons and meet different people's needs. your perception that one is "easier" or "better" shows you know jack shit about wheelchairs

we-laid-with-it

i hate it when people say things that exclude the disabled and then say "i wasnt talking about disabled people" like yeah you never are that's the issue. you never think about disabled people

the-fox-collective

FND is full body disorder. Drop attacks, tremours, gait issues, limb weakness, distonia, tics.

FND is full sensory disorder. Numbness in limbs, feel like limb isnt part of body, visual symptoms such as snow or double vision.

Cognitive disorder. Memory issues, dissociation, focus. It affect brain in entirety.

Speech problem. Physical and cognitive.

Seizures. Dissociative, functional, epileptic. Some caused by FND, some comorbids.

It cause many problems, not comprehensive list.

disabled-primadonna

'Disabled' is not a bad word. 'Disability' is not a bad word.

Unless someone has specifically said they do not like being called disabled, please, just call us disabled.

It's not an insult. It's not a bad thing to be disabled. The only reason people think it is, is because of ableism.

If you think calling someone disabled is insulting, you have to unlearn some serious ableism.

I’ve taken some time to process a bit and now I feel comfortable discussing the new diagnosis I’ve received. A few days ago I was diagnosed with Functional Neurological Disorder, a condition where the way the brain processes, sends, and receives signals is disrupted. This can cause a variety of issues but symptoms are categorized into different subtypes, I was diagnosed with movement type. It was really weird sitting in the office having the neurologist list off symptoms for this condition and I had almost all of them for the type I ended up being diagnosed with. It was also very validating, though, to have him explain in detail exactly why this is happening and to find out this is a known phenomenon.

Without going into too much detail; I am experiencing functional paralysis which is where the brain stops sending or receiving signals to certain parts of the body. This can manifest many ways but for me it has manifested as functional paraplegia, where I have a loss of feeling and voluntary movement in my legs. For me it is episodic because my brain is sometimes getting those signals through and sometimes not, it’s completely unpredictable. When the signals do get through I usually have tremors or dystonia in my legs, and these movements also affect other parts of my body.

Myoclonic jerks and movement tics have also happened

And I’ve started having some speech changes too, stuttering and similar like “tripping over my words”.

This condition has also caused weakness and fatigue, as well as an increase in migraines. Just a general sense of feeling like shit.

I’m going to be starting PT and OT with a clinic that has worked with this condition before to see how we can adapt to accommodate these issues and see if I can have any improvements in my symptoms. My neurologist is hopeful about my prognosis and said he’s confident I’ll be able to have a decrease in symptoms with the right intervention.

Also I learned something rather weird in all of this, the awareness colors for FND are blue and orange which are not only my favorite colors and have been for years but are also the colors I decorated my manual wheelchair in. Whoever is writing my life story just made some fucked up foreshadowing. The condition that made it so I can no longer use that chair most of the time is represented by the colors that chair is. Dude. Stealing that one for my own writing purposes.

#disability #functional neurological disorder #fnd #neurological disorder #wheelchair user #movement disorder #neurological disability

I have received a diagnosis that explains the new symptoms I have been experiencing. I’m going to take some time to process things and I may choose to talk about it here in the future because it’s important. But for now I’m focusing on myself and the treatment plan.

I have an appointment with a movement specialist this week and I’m very hopeful he’ll have some answers and help for me. However I am concerned because we’ve decided it’s smartest to leave my scooter at home and take my manual and if I’m not able to push myself my mom will do it for me. We have a long drive to get there and will probably have to stop multiple times along the way so it’s more practical to take the manual because it’s literally 140lbs less than my scooter and easier to get in and out of the vehicle we’re taking. Here’s to hoping for a high hand function day so I am able to have autonomy and the pursuit of figuring out what the actual fuck is happening to me.

#physical disability #wheelchair user #movement disorder #neurology

briarpatch-kids

Hey! You're probably not "embarassed" to use that disability aid in public, what you're likely feeling is VULNERABLE.

You're doing something that breaks social norms, unfortunately draws attention, and also identifies you as an oppressed class all in one package and more than likely, you don't get much choice on the matter. Of COURSE you're gonna feel vulnerable. Shit.

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