@flowercrowncrip on Tumblr

Hi, My name’s Echo, my pronouns are he/they, and I’m 25.

I have multiple conditions resulting in severe disability. I’m a full-time powerchair user and transfer using a hoist. I need 24/7 care to keep me alive.

Typing using a phone or keyboard it's difficult for me so I use dictation software a lot. This can lead to some weird typos, please be patient and kind.

If you need anything I say to be clarified or put in simple words, just ask and I'm very happy to do that for you.

I try and add image descriptions to everything I re-blog, but this is harder using dictation software so please bear with me. All images I post are described.

I’m not comfortable around disability fetish blogs –especially the people stealing random disabled people’s photos to post to porn blogs. If I see you, I will block you

Header image description: a digital painting of a row of brightly coloured sporty anyway mushrooms.

Profile image description: a digital drawing of Echo, a white person with green glasses and long brown hair and a beard sitting in a green electric wheelchair with a four point chest harness.

Devotee/ diaper fetish blogs DNI

flowercrowncrip

I survived family Christmas, which means tomorrow is Queer Christmas and I’m really looking forward to it!

(Queer Christmas is the Christmas Day event the queer org I work for puts on for queer people and our friends and families. We get a real mix of people – some people bring their whole families, some people attend who don’t have family or friends to spend the holiday with, and some people see unsupportive family in the morning then come to us for the afternoon).

flowercrowncrip

I really appreciate the little disability community I have on here. I feel so seen and supported even and especially when things are tough.

I know that all social media gets a bad wrap around nuance, including Tumblr, but I’ve been able to be so open here about all the ups and downs and complexities of being disabled/ a non ambulatory powerchair user. And I’ve been met with so much compassion, understanding and learning, appropriate advice and solidarity.

flowercrowncrip

aro-absol asked:

I'm sorry if this is unsolicited advice, and you've probably already thought of that, but just in case you haven't:

I can't speak from personal experience as I don't struggle with head control, but I know someone who does, and said person uses a neck pillow to help them keep their head up. I mean those semicircular neck pillows people use for travelling, especially if they have to sleep in an upright position.

Disclaimer: My aforementioned friend does not struggle with head control as much as you do (as far as I can tell from your post) and mostly struggles with their head falling to the side rather than to the front.

I know a neck pillow can't replace a proper solution, but maybe it's worth a try until you have your consultation appointment?

Those pillows are a godsend for sideways support without a headrest with good lateral support. I use them for support when sat up in bed and to relieve pain when sleeping.

Luckily my current headrest is almost v shaped and supports the sides of my head well it’s just the forwards motion that’s a challenge right now.

One thing I have been trying that my physio suggested is to use one of those u shaped travel pillows but to put it on backwards so the opening of the horseshoe is behind my head. I’m still perfecting it so it’s a bit hit and miss right now but it’s a slight improvement while in the car.

(Also if anyone else is using a travel pillow for neck support, I’ve always gotten on better with ones that are filled with polystyrene balls compared to ones made of foam or memory foam because they’re slightly more mouldable and fit around my neck and skull better)

flowercrowncrip

Caffeine, sugar and festive decorations have definitely helped get my head more in order. I’m still upset, and that’s okay, and I’m feeling less overwhelmed by it all now than I was before going out.

ID: a photo of a snow covered model Christmas village with lots of tiny wooden buildings and lights /end ID.

flowercrowncrip reblogged

artdepo

Anton Smit

accessible-art

[Image Description: a bronze sculpture of many disembodied hands swirled around each other, creating a circular vortex with palms facing inwards. The sculpture is outside, mounted by a rod on a concrete cylinder base. End ID]

flowercrowncrip

I just get the feeling that if we end up going with a head strap that the amount of ableism I encounter out and about will increase 1000 times. Especially the patronising, speak to me like a child/ acting like I’m not right there flavour of ableism.

flowercrowncrip

My head is such a mess at the moment. On one hand I’m relieved that there might be options to help with my head control, on the other hand the solutions we have left (collars and head straps) are all very visible and, as much as I know something needs to change, I’m not ready for that kind of change yet either.

I’ve headed out to the garden centre to try and distract myself with pretty lights, coffee and cake and hope that helps a bit

flowercrowncrip reblogged

twofingerswhiskey

wholeheartedsuggestions

extra love to trans people who have to go by their dead name around their families for the holidays

flowercrowncrip reblogged

flowercrowncrip

Wheelchair services might be able to help with the whole keeping my head up situation! Just have to wait for an appointment now

flowercrowncrip

We’re going to look into head straps and potentially different collar options not available to the physio teams. They can’t promise that they’ll find a solution but it’s hopeful!

flowercrowncrip

Wheelchair services might be able to help with the whole keeping my head up situation! Just have to wait for an appointment now

flowercrowncrip

Lying in the forest on a bed of moss would cure me tbh

flowercrowncrip

For some reason that I don’t fully understand, having my chair tilted back further is worsening the feelings of being disconnected from the world that I get as a result of my physical disability. Maybe it’s because I can’t look around as easily? Or because I’m not looking where I naturally would?

I feel like I’m living in a bubble even more than I normally do and it’s such a difficult feeling to have. I can see the world, I can move through the world. But I can’t directly interact with it (at least not easily). It’s somewhere between the difference between going for a hike and controlling a camera drone through a video link.

I’m trying my best to reconnect as best I can. I went for a walk along the river and it was beautiful and it did make me feel better. I’ve been blowing bubbles and letting them fall and pop as they hit my face. But everything just feels so far away and out of reach (which… it literally is, but I’ve been more aware of it if that makes sense?)

Advice from other people with severe mobility impairments who experience this is welcome.

(If you don’t have a severe mobility impairment then, respectfully, I’m not looking for your input right now)

flowercrowncrip

I made it to the river for the first time in so long and I feel so much happier. I was absolutely frozen, but it was definitely worth it

ID a photo of a river in winter sunlight. Echos wheelchair control is visible in the bottom corner /end ID

flowercrowncrip reblogged

anxious-and-in-pain

jokerjokinghahaha

Call now to recieve help with the inability to make phone calls!

Fill out this forum to receive assistance with your difficulty filling out forms

Come on down to our center thats two hours away so we can give assistance with your inability to walk or drive

There's help out there! You're just not trying hard enough!

thesustainedworldatransverse

Phone this number to be assessed for hearing loss.

Come inside and tell the staff to put down the ramp so you can come inside.

Illiterate? This book can help!

Of course we have a disabled toilet. You'll need a key/code/magic spell to open the door.

Yes, we have a lift/elevator. It's blocked by a pile of heavy debris. It's also locked. Oh look, it's also out of service.

No you can't work from home/attend appointments via videocall because you're disabled. You can when there's a pandemic on though.

flowercrowncrip reblogged

briarpatch-kids

nondivisable

me carrying a stuffed animal around while being disabled is not "infantilizing disability"

I am an actually disabled person who carries a stuffed animal as comfort bc disability is hard

what's "infantilizing disability" is assuming that just bc I carry a stuffed animal I'm not capable of making decisions for myself. or that having a stuffed animal makes me a less serious, adult person than you are.

flowercrowncrip

Anonymous asked:

Is there something you wish other disabled people would understand about you? (from the ask game)

I wish people wouldn’t wish to be treated like me because they think I get treated better as a full time wheelchair user whose disability is physical/severe/ visible etc.

It’s always based in a misunderstanding of how badly people like me actually get treated. (E.g. you’d never say X to a full time wheelchair user)

And I feel like people should aim higher! Don’t ask to be treated like me, aim to be treated in a way that honours your humanity and personhood!

It also means I don’t have to keep explaining to other disabled people the bad ways people/life treat me when I could be working with them to make sure everyone’s humanity is supported and valued.