• Phoenix Rising needs funds to operate: please consider donating to support PR

Take Up Thy Seat... and get out!

According to the occupational therapist I am a candidate for a wheelchair grant. According to the psychobabblers I should not be humoured in my 'false illness belief' and therefore must deny my body the 'reward' of wheels.

In 2013 when I first started getting my pseudo-symptoms, I stopped being able to get to and from work. I am a pragmatic kinda guy so I figured if I can't walk to work then I need something in the form of wheels that will fit on a bus. So I looked on Ebay. What else? I found an ad for a motorised wheelchair and, after having a look at it, I bought it. It came with a Roho cushion, which, unbeknownst to me then, was worth as much as the chair! Whoda thought!

It was the simplest solution. Neat and tidy. Can't walk? Get some wheels! So I did.

Now that I am 3 years on, and wiser about medical assumptions and asses in general, (especially as someone seated when everyone else is crotch height!) I have discovered that having a wheelchair is political. The psych, sorry, NEUROpsychologist (which somehow means that they are better) told me how I had 'chosen to identify myself as someone in a wheelchair'. News to me!

In my community I was 'that guy with glasses' now I'm 'that guy with the wheelchair', but other than that, I don't think I am particularly identified or that I identify myself solely as someone in a wheelchair. It's preferable to 'that guy that walks like a drunk cockatoo - he went for the ferry this morning and he'd have just about got there this evening, if he hadn't keeled over on the jetty'.

This year, after having done away with my old neurologist with his acoutrements of psychobabblers, I have been getting a bit of help from an OT. She says that I would possibly be eligible for funding for a new wheelchair. Apparently my old one is all wrong. It is too big, for a start. I bought it from a rather portly lady who was moving up to a smarter Jazzy in grey plush, so, yeah, it was her size. And my precious Roho is now the wrong type of cushion because it has too much instability. Hmm, I had not a clue about all this 'fitting for a wheelchair' business. It's something like being fitted for a bra, I believe. You have to have the right shape and support, not just sling into any old thing.

But to become eligible I need to get a number, and to get this number I need to have... a diagnosis!!

Now I'm looking askance at my faithful wheelchair. It's too big - I must look ridiculous in it - a Ken doll listing around in a full size Mack truck trying to look like he's supposed to be there. I didn't get it through a doctor's approval - I shouldn't be using it in public as though I have some sort of right, making people shuffle aside for me. We are both phonies. People are looking, I'm sure, wondering why I am driving my larger sibling's mobility aid and what right I have to be taking up the disability space on the passenger ferry. I know they are murmuring amongst themselves, wondering how I can blatantly flaunt my obviously undocumented, hysterical 'need' to replace normal anonymous perambulation with speed and sympathy - Poor Aunt Joan can't walk very well, barely a shuffle, and SHE'S not weak or fake enough to jump into a wheelchair at the first hint of a dizzy spell. And I'm looking at other wheelchair sitters, noticing how much more authentic they look than I, how elegantly tailored to their chrome extensions.

Now I'm thinking any day the wheelchair police are going to stalk up to me in the most public of places and shout through their megaphone, "put your feet on the floor where I can see them! What are YOU doing in that chair? YOU aren't officially disabled! Where are your diagnostic papers? Your body shape is clearly incongruous with that chair size! Your cushion's air pressure ratio to your buttocks is not state approved. There's not enough pity for you as well as all the people who REALLY can't walk! Stop being a hypochondriac and get some exercise!!" and then they evict me off my Roho and repossess my chair for an overweight (but attractive) paraplegic child and they egg me with eggs laid by the fraud chicken and smell like shame.

In my daydreams I name my 'proper' little wheelchair Vindication. I will be riding it proudly with an official stamp on its polished front and I'll fly my papers like a flag...

Why do I need to justify my need?

When I bought the wheelchair to get to work I was innocent. I bought it like someone buys a toaster. Now I look at it with eyes that belong to someone else; some judge whose approval I value. If ever I needed a psych, it will be to help me separate my internal Saturnine voice from those of perceived external authority figures far more than I need one to help me eradicate any identification as someone who has a simple need. Couldn't I be just someone practical and smart who wanted to get to work without wasting too much energy?

Comments

You are an amazing writer and I relate to every word. Thank you for sharing this and please write more when you are able.

I received comments today from the woman drawing my blood who was literally grilling me as to why I needed a wheelchair. I said I had a breathing problem and she said, "Well, where is your oxygen or are you refusing to use it?" Whaaaat?

I explained it was neuro-muscular and autonomic (which was over her ability to comprehend) and then she started speaking to my husband about me like I was no longer in the room. It was maddening and also made me sad.
 
Firstly, you are a wonderful writer and storyteller.

Secondly, this seems like the perpetual fight to justify ourselves to those around us that I'm pretty sure we've all had the misfortune to experience.

I say, stick with it if it works (not that my opinion matters). Give it a label that takes you back to the carefree frame of mind when you just saw it as an aid to get you from here to there. Call it your walking aid, recuperation chair, commuting buddy or whatever. Let's keep it simple. You want to get to work without passing out and or crawling there on your hands and knees (that'd take too long and you seem like a punctual kinda guy).

If it works for you, do it. I've used my straighteners to curl my hair, I put two dog toy balls in a sock for homemade yoga balls for physio and it made life easier.

Put your bag in the now handy and functional extra seating space next to you, and ride with pride!
 
'Ride with pride' that should, by law, be someone's motto somewhere.

@Gingergrrl , incredible, isn't it? I think that stupid people look down on the seated person because standing is higher so they are better. I truly sympathise. Being at arse height, you see a lot more arses.

Thanks heaps for your great encouragement. Love you all.
 
What a wonderful blog post - so glad I came over here to read it. I also use a wheelchair and find it my saviour. Without it I couldn't leave the house for trips out with my family, and in the beginning of the illness, when I didn't realise I needed one I didn't go out for two years! I also self referred for one, causing confusion with the nurse, Dr and everyone else. I decided I had a right to one, so I got one. I can also walk and sometimes I leap put to walk up a flight of stairs while my husband lugs the chair up, or I get out to 'stretch my legs' and push it myself for a bit. All of this behaviour freaks people out, but I NEED to sometimes be outside my house. I need to sometimes go for a wander around the shops, or visit a museum, or go for a 'walk'. Unfortunately I don't have the pressure cushion, or an electric wheelchair. I have severe Coccyx pain and was recommended I get a pressure cushion, but I just looked at the prices - eek!
 
Hey, @justy. Thanks for the reply. If you get up, they get confused. They just don't know where to put their customary pity. Are you some sort of sham for using a chair when you can walk? You get up and they feel confused, you sit back down, they feel sorry again. It's all too hard so you should just stop it! It's amazing how political it is. It should be just normal to use one if you get tired. Instead you need some sort of medical permission or people feel like you are tresspassing on their compassion! My brother made an interesting point - that cars are also mobility aids yet no car driver is vetted for their 'reason/s for wanting a car'. No one judges them for wanting to nip up the road to grab some milk as opposed to what they 'should' be doing which is walking there.
 
Yes agreed, it is political. When I sit in the chair people smile at me, or ignore me. When I get out to open a door for myself or reach some beans off the shelf they look horrified. Yet most people who use wheelchairs have the use of their legs and have some mobility. I would love to see some awareness ads around this issue. People always PRESUME you CANT walk if you are in a wheelchair. And the whole cultural notion that using one is 'giving in' is very damaging for people with all sorts of chronic health issues. I am HAPPY to have mine, it is liberating, not enslaving.
 
Mahalo for making me smile first thing this morning... I just joined this site as I'm tired of being so isolated (I've been homebound for the past year+ with very few visitors) and this is the first post I read. Love your writing and sense of humor :)
 
Welcome, aloha! KauaiWahine! Thanks for the encouragement! Phoenix Rising is a great place to reinvigorate the ole brain cells. I was very isolated, confused by my illness and, I suppose I'd have to say uneducated about the broader world that I found once I started sharing. I've learnt heaps and gained confidence that has helped others understand why they're having so much trouble being believed. It was these guys who helped me to be my own agent in finding answers and treatment. It was someone on PR that taught me about POTS which led to more answers. I love being part of this community.
 
Someone posted this article on a Facebook group I attend. It's gold.

https://medium.com/@OptimisticGrin/people-who-use-wheelchairs-dont-actually-want-to-kill-themselves-d76493596eb6#.dyde9a2kw
 
The article I posted below says a lot about how people in wheelchairs are viewed - as in how they are expected to feel about themselves: disadvantaged. It's like we drag ourselves around in a little prison that is sad and dehumanising, embarrassing for other folks to look upon our obvious vulnerability. God, getting around on wheels is not the end of the world. It just works as a sympathy trope in films. This sort of sentimental shlock only promotes attitudes of disdain when people see us using a chair to just get from a to b because it confuses their emotional expectations. I was only reading my ENT report the other day and they said I was 'confined' to a wheelchair. No I'm not! I not confined, I'm not bound! I am mobilised, I am aided! I hate this maudlin dopey milking out pathos with such unhelpful cultural symbology. Grr! That got the dander up!
 

Blog entry information

Author
Jeckylberry
Views
364
Comments
14
Last update

More entries in User Blogs

More entries from Jeckylberry