flower crown crip

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 swallow in flight

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.

Remember you are a guest in this space. I don’t know a single person who would rather you shit yourself or get assaulted than use the disabled toilet, but please remember that these toilets are built and designed for disabled people after a huge amount of campaigning and activism.

Don’t touch or move things you don’t need to. If you’re not familiar with how things work or why they are where they are just leave it be. The position of a bin might not mean anything to you but it could be really important to a wheelchair user who needs to change their tampon. Don’t touch things like grab rails either – while they’re fairly tough and you’re unlikely to cause any damage it’s not impossible and if you don’t touch it, you can’t break it.

Related, but important enough to have its own point: please don’t touch the red cord. Do not tie it up, do not wrap it around anything, don’t tuck it behind a bin. Don’t touch it (The only exception to this is to untie a cord that’s been tied up) If the cord doesn’t fall freely to the floor it could prevent a disabled person calling for help in an emergency. If you’re worried about accidentally pulling it there’s almost always at least one reset button in there with you. Press that and it cancels the alarm.

If possible allow other people waiting to go first. A lot of disabilities, both visible and less apparent, can cause problems with incontinence, urgency or pain that make it difficult for someone to wait to use the toilet. If there’s someone else in the queue and you are able to do so, offering to let them go first might really help them out.

If you want to get a radar key, get it from disability rights UK or give a small donation to a disability charity (again only if you’re able to). I’ve seen a couple of trans orgs giving away free radar keys and it’s unclear how they are being sourced. Knockoffs are common but only “real” RADAR keys are from Disability Rights UK and any profits help fund their charity work. Bear in mind that most disabled people also have to pay for these keys which are about £5. (Disability Rights UK say their keys are to be sold to disabled people or organisations only, this is a legal thing they have to say about VAT relief. There is no real way of following up how disabled someone who buys a radar key is because you don’t need to claim any benefits to be eligible for VAT relief and keys are a low value item that isn’t worth anyone looking into when things like adapted cars exist. Be gay, do crime, support disabled people having rights.)

Know the difference between a standard accessible toilet and a changing places toilet. Don’t use a changing places toilet if there is any other safe option. These have a different symbol and are bigger and fitted with extra equipment for severely disabled people and our carers. That equipment is more sensitive than anything you’ll find in a standard accessible toilet so if you do find yourself in one touch nothing. Especially don’t move the hoist (lifting equipment) as it can cause it to run out of power and make the whole space functionally useless if it’s not in the right space on the track. (To be fair this is an unlikely scenario as there aren’t that many of these toilets, but just in case)

ID1: a photo of the cover of a square colouring book titled “Bold and Easy Swear Word Colouring Book” by revive coloring books. The cover is decorated with speech bubbles with censored swear words. The words are “fuck” “shit” “pissed” and “fucking” / End ID 1

ID 2 & 3: two pages from the colouring book that haven’t been coloured in. They all have large outlines black outlines of text in the centre with large cartoon style designs to accent them. The first has text reading “fuck the haters” in all caps and is decorated with large smiley faces with different expressions. The second reads “Hell Yeah” in all caps with what looks like flames or an explosion behind /end ID 2 & 3

This doesn’t work so well for me, but it’s a good tip I’m happy to pass it along in case it helps others!

ID1 a photo of an active hands small item gripping aid layed out on a surface. It’s a blue neoprene fingerless glove with a green acrylic marker held to it with a Velcro palm pad. A second Velcro palm pad is next to it holding a pink marker. The palm pads can be swapped out. /end ID1

ID 2: a photo of a guided hand device being used with a flat hand piece. It is an arm rest that moves over a flat board to help with painting and writing /end ID 2

I used the flat hand piece as an armrest which worked well with the gripping aid. The different pens can be put in the palm pads for the gripping aid and then changing between them is quite simple – the pads are designed to be used by people with poor hand function and have lots of big loops which really helps move them and get them into place. After that they just Velcro onto the gripping aid.

The hardest part was the pen lids, but I am getting much better with those with practice.

ID: a yellow and black plastic cable cover which is approximately 5-10cm tall with steep sides and looks like a small speed bump /end ID

Every time I go over one I need someone to help hold my chair and get me over it. Even with that support it hurts like Hell and has caused whiplash injuries for me in the past. It’s also very unsafe for others because even with support I cannot 100% control the angle my chair will end up lurching over it (and my chair weighs over 150kg without me in it so it’s not something you want to collide with). It’s also terrifying and makes noises that make me very concerned for my chair’s structural integrity.

If you want your event to actually be accessible to wheelchair users then consider using something more like this:

Is this sarcastic? I’m tired and It’s hard to tell online.

I’d really like some assistance processing my vEDS diagnosis and declining health and medical devices but I’m worried that the therapist would just look at me and tell me that I should just accept that I’ll be miserable forever - that is a real life example of something an acquaintance told me.

I have also had some terrible therapists and mental health professionals. What worked best for me was finding someone who was experienced with chronic illness and disability and then straight up telling them the first time I met them exactly what I was looking for.

I went in and said something like “I don’t want to be told my life is going to be awful because of my disability and have to defend my value, but also I need space to talk about the difficult things without being told I’m being too negative (or having anyone making the assumption that my life will be awful forever). Is that something you can do?”

As it happened her other job was with a disability organisation and she got it pretty much immediately, so we got on well. But laying it out right at the start meant we were on the same page and if she’d reacted weirdly I’d have found someone else.

With my current key worker I told her a bunch of ableist stuff I’ve heard from other professionals and helplines and she was suitably horrified and said she understood why I was reluctant to trust people rather than defending any of it so I felt able to trust her a bit more.

You might also be able to find programmes for disabled people or networks specifically for matching disabled people with disabled therapists, especially if you’re willing to do online sessions (at least near me).