OodleNoodleRoodle

5 simple exercises to awaken dormant muscles

for example idea that powerchair / their users always worse off disability wise than manual wheelchair / their users. or that powerchair = easy use.

am full time wheelchair user & rn use my custom manual wheelchair with power assist all time. but in past used group 1 / 2 powerchair (a non custom powerchair w big base & big plastic leather seat that technically cushioned. mine be technically group 1 bc need the transportability n take apart (bc know eventually need get it to literal other side of globe) but it closer to group 2 powerchairs than those rly small collapsable 50 lb folding power chairs) & that manual wheelchair at same time. so have enough experience say that idea above, simply not true.

bc of my disability & seating positioning needs, sitting in that kind of powerchair be really uncomfortable n painful n exhausting.

mine have medium height backrest, which be not enough for me. even if it do have higher backrest & headrest would not be able sit in for long because it simply not supportive enough. it not keep body in place. it not designed keep off pressure on my skin n muscles n bony spots.

it also incredibly bumpy, every vibration be transport into feet n leg n rest of body to neck etc.

all these reasons mean actually need spend more energy n effort in those kind of powerchairs to keep body up n sitting, not to mention properly sitting w right posture that not give pain or worsen disability or bad pressure.

because of that, can only tolerate use it for 1-3 hours at time max.

n the collapsing easy transport 50 lb type folding powerchair, which glad help some people, simply would not work for me, even with one with technically backrest that cover entire back + headrest that be going around disability influencer instagram rn. it does not n will not work for same reason - except more intense because it even less supportive on body.

versus. my custom manual wheelchair, which not meet all my disability needs, n give me pain n symptoms, n complain abt it lots, but even with that!! it infinitely better than my powerchair n **is actually usable**.

because it built for me, the backrest high enough to support body + shaped n contoured in way that keep body in better place, including on two sides / left n right. n same for headrest!

my cushion not put as much pressure on my skin, esp bony places am prone getting pressure sores on, n (mine rn not do this well, which be bad on my body, but there options that do) shape in way that keep butt & thighs in place so not slide n friction (which can also create pressure sores) or not need significant energy keep in right place.

my wheels also be designed to keep ride as smooth as possible (sth special abt spokes), so my body not suffer as much from all the vibration.

(n even with these, still exhausted n in pain n need be in bed lots to recover from, yes, “just sitting” in wheelchair. my non ambulatory friends w complex disabilities who use custom group 3 powerchairs, aka those fancy complex rehab ones that do tilt n recline n lift etc, say same abt theirs too! being in wheelchair can be very exhausting!! especially because some of our disabilities that make us need wheelchairs.)

n yes, am someone who cant rly push self for much in manual wheelchair. need power assist and/or someone push me (often both!! bc my power assist be exhausting n heavy!) to properly get around or else not able leave house at all (not exaggerate). even with this!!! my manual chair still work better for me than power chair.

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sometimes it not just manual vs power, sometimes it also about (or sometimes more about!) custom vs non custom!

some people functionally cannot use non custom wheelchairs, some people cannot use non custom wheelchairs at! all! (people have literally died directly bc airlines broke their custom group 3 powerchairs n not replaced in time!)

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No access info for any of the venues

Box office is inaccessible

Google “[festival name] accessibility”; get info on their “accessible pricing” (pay £1 less if you want to). No mention of free tickets for essential carers

Do a lot of disability detective work; most venues don’t have wheelchair access

One claims to be accessible, look inside: “we’re an accessible venue. There are three steps to get in, but we can help you with those”.

“Everybody welcome*”

We have people who can carry you up the stairs

Even worse than "3 steps but we can help you!" what do you mean you're going to carry someone up the 1 to 2 FLIGHTS of stairs? What?

So I carefully explained how I have a manual handling plan that sets out how I can safely be moved and that I cannot just be lifted by a random stranger who isn’t familiar with my disability. And that even if they got me up the stairs, my wheelchair is twice as heavy and there is no way they’d get it up the stairs.

I asked them, knowing that, what was their plan once I was upstairs, just lay me in a corner somewhere and hope I didn’t get stepped on*? Cause that doesn’t sound like a good party

It didn’t change anything. Events continued to be in the same venue, and they stopped trying to include me at all.

so. you want to bring a heavy, fragile powerchair upstairs? a powerchair that, if you drop it, could mean... failing out of school, losing a job (and unemployment for months-years), dying of pressure sores? it's not low stakes.

Because of that price tag, in the UK most people who rely on NHS funding for a CRT powerchair don’t have access to funding for a backup chair. I’d imagine this is similar in other places. Without my chair I’m completely housebound with no independent mobility.

That means if you drop and break my chair I can’t get to my workplace, can’t access healthcare, do my shopping, sit in the garden, visit my elderly relatives or housebound friends, or anything at all that means leaving the flat.

It can take so long to get new parts for a powerchair and even longer to get assessed for a whole new chair. Where I live if you can’t get to the wheelchair clinic (say because someone threw your only means of mobility down a flight of stairs) you’re waiting even longer for the assessment to get prescribed a new chair and the wait for any new part to be fitted is also longer because there are only so many engineers, OTs and physios and making house calls takes much longer per visit.

So in order to keep getting the full evil karma experience, every time I do something convenient or utilitarian that raises my karma I go back to Moriarty’s Saloon and just open his terminal over and over again.

housebound doesn’t mean “cannot leave the house under any circumstances”, but in fact means “can leave the house, on the requirement of needing assistance from either a mobility aid to avoid worsening symptoms, or with the help of another person, and leaving is going to take immense effort, exhaust me, and take me a long time recover from”.

Edited to add: Since a lot of people are reblogging this original post, I'm adding the updated version I did that incorporates the intersex circle...