wheelchairtetris

[wheelchairtetris]

Reblog if you understand that disability is not a monolith and two people with the same disability do not have identical experiences ✨

[wheelchairtetris]

RURAL HEALTHCARE MATTERS! RURAL HEALTHCARE MATTERS SO MUCH!

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Local hospital system is no longer in network for my insurance. Violence in my heart.

[wheelchairtetris]

as wheelchair users we are under additional scrutiny to always move our bodies in coordinated ways despite the fact that many of us (including myself) explicitly struggle with coordination because of our disabilities.

what I mean by this:

pedestrians (people who walk as their primary mode of mobility) are allowed to bump their bodies into doors, counters, shelves, etc. it's not just common, there are countless jokes about clipping the corners of objects and stubbing your toe. this would be because even better coordinated people are still imperfect at coordination and will make mistakes with the way they move causing them to hit things with their body.

all humans are clumsy

but the minute I bump into anything with my wheelchair I get put under additional scrutiny. "is it safe for you to drive that thing? you could hit someone." "you could have damaged that cabinet." "stop being so careless you're going to break something." "slow down and maybe you won't hit that next time." people start walking further away from me fearing for their ankles. people stop trusting me with the way I move my body and extensions of it (my wheelchair).

beyond this they assume I am reckless. they assume that I'm just not trying to coordinate my movements, that I'm going too fast, that I'm irresponsible with how I move through the world. it never even once occurs to them that they too bump into things.

for most pedestrians who have visually unimpaired coordination they don't gain this scrutiny when they crash. they don't have to worry about falling out of favor with people because they walked into things.

wheelchair users do and I'm sick of it. why is it that you won't walk next to me because I bumped a shelf? do you not see how that's isolating, demeaning, and offensive? I would say that it's like they were waiting for evidence that I couldn't be trusted to avoid hitting things but people have told me that this is exactly the case. they don't believe we are capable of navigating the world with our wheelchairs.

imagine if you, a pedestrian with unimpaired coordination, stubbed your toe and I said I wouldn't roll next to you anymore because you might walk into my wheelchair? yeah. that would hurt, wouldn't it? so tell me why it's okay to do the same to me just because I'm on wheels. and it's not like people don't walk into my wheelchair- people do it all the time, strangers and friends alike. it happens more to me in my wheelchair than when I am standing/walking. I just tolerate it because I understand that people are fundamentally imperfectly coordinated.

[wheelchairtetris]

Headache :(

[wheelchairtetris]

RURAL HEALTHCARE MATTERS! RURAL HEALTHCARE MATTERS SO MUCH!

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Sore throat from overdoing it. Again. Ugh.

[wheelchairtetris]

hey, it’s severe myalgic encephalomyelitis awareness day. i’m hopeful that things will change. i’m hopeful that people will learn about us.

infographic credit; see more here

please hold us in your heart. ME itself is not rare (it’s over 5x more common than MS), but it’s really rare to find someone who actually knows what severe ME is! ME has been misrepresented as a vague fatigue syndrome. it is not. it’s a complex multisystem illness with a predictable pattern of neuroimmune crashes that come 24-72 hrs after physical or sensory exertion. it can become progressive and fatal. millions of people with severe ME are isolated and neglected by doctors whose knowledge of ME is based on outdated research.

it seems as though long covid can sometimes progress into ME, so cases are increasing, but many of us have had it for decades already. it crushed my life when i was a kid. but i’m still hopeful.

[wheelchairtetris]

What is the point of getting put on an antidepressant if it doesn't let me get tipsy on one drink. Come on.

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I feel generally fine and ok and then I go outside in 80 degree heat to get groceries and immediately feel lightheaded nauseous and violently angry at everything. Death to summer!!!

[wheelchairtetris]

ID: a tumblr comment by @wrenfea that reads “aw man sailing is so cool! if you don’t mind sharing, what methods did you use to make it accessible to your needs? I’d love to go sailing but am scared about having to stand for long periods. Also congrats!

Thank you and I don’t mind sharing at all! I hope you don’t mind me making a new post, there’s a lot to share and I felt this was the easiest way to do it!

I go to a sailing club that’s specifically for disabled people, so we have access to boats which are designed specifically for disabled people to sail as well as other equipment. There are volunteers who help with things like getting the boats ready and in the water so there’s absolutely no need to be able to stand at all. The group is a complete mix of ages and disabilities including people with mobility impairments, chronic illness, intellectual disability, autism and people who have become disabled as they have grown older (our oldest sailor is in his 90’s!)

The club has a few different types of boat, but the kind I sail is called a Hansa 303 which is a two handed dinghy with a heavy centreboard/keel.

These boats have a modified steering system, so instead of a tiller it’s like a mechanical joystick in the centre of the boat. I can’t use the ropes so I do the steering while the person I’m sharing a boat with will control the sails, but you can get electronic systems for both steering and handling the ropes as well, which can be controlled with electric joysticks or even things like sip and puff for so even people with no upper limb function can be in full control of a boat.

The boats come with a hammock style seat as standard, but more supportive seating can easily be fitted. I use a custom seat system which has been made for me by another member of the group who worked as an engineer on deep sea oil rigs before sustaining a spinal cord injury. It’s not perfect and I can only tolerate it for a couple of hours max and need to take extra pain medication before going out, but it allows me to sit reclined while providing lateral support for my trunk and head which is important for when the boat tips side to side. (The boats will tip when there’s a bit of wind, but are designed to be almost impossible to capsize to the point where the club I go to tried to do a capsize drill with them but had to give up because the boats remained upright even with several people trying their absolute hardest to tip them over!). I also use pressure cushions to prevent pressure sores from things like my knees being in contact with the side of the boat

I’m able to get hoisted in and out of the boats. This hoist isn’t just used for people like me who use a hoist for all transfers, it’s used by everyone who is unable to safely or comfortably step from a wobbly pontoon onto a wobbly boat (including people who normally walk unaided).

The club also has a few motor boats, including a flat bottomed boat that you can drive your wheelchair straight onto. I go out in this boat when I need to stay in my wheelchair for some reason.

I also know of another sailing group near by that has bigger sailing boats that go out to sea, and which can accommodate wheelchair users who want/ need to remain in their wheelchairs as well.

For people in the UK Sailability groups are a good place to get more information or start sailing yourself. I can’t speak for all groups, but the one I go to everyone has been really lovely and helpful when it comes to getting people on the water safely and as comfortably as possible.

If you (or anyone else!) have any questions about sailing I’d be really happy to answer them.

[wheelchairtetris]

*Deaf/Hard of Hearing = anyone with any amount of hearing loss. for the purpose of this poll this does not count people with APD who do not have hearing loss

*APD only = you have APD and do not have hearing loss.

if you have both APD and hearing loss then select the D/HOH option

APD = auditory processing disorder

[wheelchairtetris]

"drug-seeking behavior" woah the patient wants u to treat their ailments with medicine ...... thats crazy

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Obligatory I am not in crisis. But this is why disabled & chronically ill people kill themselves.

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it went badly btw

I have a big appointment ive been waiting many many months for today wish me luck everyone aaaaa

[wheelchairtetris]

endless cycle of hoping that doctors will be helpful and the crushing reality after every appointment when I realize that none of them actually want to help

[wheelchairtetris]

I have a big appointment ive been waiting many many months for today wish me luck everyone aaaaa