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pimping, disability, customise, wheelchair, mutant


Posted on 01.03.2009 at 21:31
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It has been said more than once that a hospital is no place for a sick person.  But it is the kind of place one might expect to be relatively accessible, given the numbers of people being moved around the building on trolleys and in wheelchairs.  Oh, the naivity of such an expectation!

Last Wednesday, I was at the outpatients department in Sligo General Hospital for an appointment with a geneticist.  Sligo is one of the better hospitals in the country, serving a geographically vast and disparate population.  It is desperately trying to hold onto its recently acquired cancer care services, so that people in North Donegal needing daily radiolotherapy treatment or regular and debilitating chemotherapy don't have to make a 6-hour journey to get to this treatment, never mind the 6-hour return journey.

Part 1: The Front Door

So, back to my jaunt last Wednesday.  The hour-long car-journey left me very stiff and sore as usual, and I had BOTH my PA's with me - one to drive and one to push the chair!  We arrived at the Outpatients main door, which opens straight into a cafe area.  Unlike the main doors of the hospital, these were two sets of heavy manual double-doors.  The second door of each set had to be unlocked and held open by passing cafe staff, my two PAs and other hospital visitors.  Having swerved and ducked under the arms of this team of door-holders, I find myself in the care, facing a table and chairs, with a rack for trays on my left and an approximately
2-foot wide gap to manoeuvre myself, my chair and my guide-dog through.  It was like some bizarre stunt-wheelchair-rider obstacle course.  A couple of chairs, tables and "Danger; Slippery When Wet" signs were kicked aside to allow me ingress to the main hospital.
Whew!  One obstacle course complete, several more to encounter.

Part 2: Waiting Under the Stairs
My appointment letter instructed me to make my way to "Waiting Area 5".  This involved registering at a very flimsy desk which was akin to a street stall with comparable facilities.  Naturally, it had a counter level which was over my head at wheelchair height, so I jammed myself between the side of the desk and a row of seats for waiting patients.  This also meant blocking the main access channel to a number of clinics and offices, so everyone who waited to pass had a great chance to ignore the sign on my guide dog saying "Please don't distract me, I'm working" - petting her, talking loudly about her without any reference either to me or to the fact of her being a WORKING dog.
We were directed to wait in a cramped space that felt like a cupboard under the stairs.  It included some toilets, none of which would accomodate a wheelchair, and one of which had no way to lock or keep closed from the inside.  We were right beside an emergency exit which was directly opposte the front door we had squeezed through.  No way of leaving that way without setting off alarms, though.The only space I could really wait in my chair was directly in front of a door to an office.  Although this didn't prove a problem, it was a great excuse for the excitable nurse that came though to make fools of her and me.

Part 3: Over-excited Nurse
Human beings, in any given situation, can be the greatest hurdle to accessibility.  In particular, with guiding or assistance dogs, certain people get transfixed by the dog and their brain stops working.  One such was a random nurse who passed through where we were waiting.  The usual squealing and gooing ensued, the getting down on all fours to let the dog lick her face.... and then she went into her little clinic room to treat a BABY.  No apparent washing of hands, though I'm (fairly) confident she would have worn gloves.
As she came back through, she noticed that I was parked in front of an office door.  She knocked on the door and poked her head around it.  "Just to let you know, there's a.... a PET out here; just so you don't step on his tail".  She did NOT say: "Just wanted to let you know there's a woman in a wheelchair in this waiting area.  There's nowhere else to fit her wheelchair, and she has a guide-dog here too."  That would have been helpful.

Part 4: Blood in the Stairwell
After a very interesting consultation with a wonderful geneticist, I went down the corridor to have some blood drawn for genetic analysis.  The bloods room seemed to be two rooms with a connecting door, access to which was via a narrow passageway at the foot of a flight of stairs.  I had to go straight through the corridor past the stairs in order to turn my wheelchair, then back along the corridor to the entrance.  There was a row of seats along this corridor which meant I had to wait in the space directly in front of the door.  There was no way of bring my guide dog in, so my PA kept her company outside while I had genetic material extracted from my arm to be kept on record indefinitely.

Interlude: A Reflection
I realised that I have no problem
with my DNA being kept on record indepenitely for scientific research, health issues and future historians or anthropologists.  Just as long as NO government agencies or Justice powers have any access!

Part 5: An Unfortunate Potted Plant
I took the opportunity to visit the Day Services section of the hospital which houses the Pain Clinic.  Not for an appointment, but to see if there was any news about my referral to Bath Rheumatology Hospital for tests.  I had been on the system in Bath since last June / July (about 8 months), and for most of that time, their administrators were waiting for an E112 form from the HSE to pay for my treatment before they issued an appointment date.  Meanwhile, the HSE were patiently (pun kind of intended) waiting for an appointment date from Bath before issueing the E112 form.  After about 6 months of me trying to find out who to ring and talk to to move things along, I figured out that this was the impasse and it started moving again.  NOTE: My pain specialist, his secretary, the administreators in Bath Hospital, the HSE office in charge of issueing E112s: NONE of these people, with whatever resources they have, and whatever their job description, noticed that this was what was holding up my best chance of a diagnosis for my crippling pain condition.
SO I went up to Day Services, which again has a counter height that extends above my head when I'm in the wheelchair.  To communicate with the staff meant squeezing in between the side of the desk and the first row of seats for waiting people.  After talking to these good people, I backed out to wait.  There was (maybe still is) a very unfortunate potted plant which just got repeatedly battered by my chair no matter how I tried to manoeuvre.  I just gave up and stayed in the middle of the corridor as usual.  The waiting area was thankfully very quiet.

And the pain clinic secretary went and rang Bath and was able to give me my appointment date!!  I'll be admitted on Sunday 15th March for 3 (more likely 5) days.  Now for the fun of international travel in a wheelchair!!

Today's Subjective Rating:  Grimly Amusing

Some of you may be relieved to read that I have a more positive tone today than on my previous rant!  The simple reason for this is that better things happened today.

I got to test-drive an INVACARE MIRAGE POWERCHAIR this morning.  This is the third model of power-chair I've test-driven, but it's always been number 1 on my list to buy.  And not just because it comes in PURPLE!!  It's also the most comfortable, adjustable and neat power-chair in its class.  It comes apart for transporting in the back of the car, and is actually narrower than either of the manual chairs I've used and I can drive it right in through my front door.
I'm ordering it through an Irish company, Medifix (http://www.medifixservices.ie), and the staff have been really prompt, helpful and personable.  They''re putting in the order hopefully today or tomorrow, and mine will be delivered within about 3 weeks!!

Invacare Mirage Powerchair - from the Invacare catalogue

It's hard to express either my impatience to be mobile or my excitement at soon being able to leave my own front door without having somebody else with me.  (Except for Quasi, of course, but she's more like part of me).  It's hard for me to appreciate that I've effectively been under house arrest for nearly two years.  Probably because if I'd been thinking that for the last 2 years, I would have gone a lot more insane than I actually have!! 
Of course, using a power chair also means that Quasi (my guide-dog) will be able to work properly.  She adapts so quickly, and I'm afraid it's been quite a dull time for her over the last while; and when it hasn't been dull, she's been anxious about me.  When we're out in the manual wheelchair, she effectively spends all her time trying not to get entangled in the chair, and trying to stay out of the way and not get run over!  I don't have a hand free to work her with the harness; or else someone is pushing me so she can't effectively do her guiding work.  But she LOVES power chairs!!!  It's just the two of us, traveling at a comfortable pace, she's doing the navigation and is much less likely to get run over by the chair!!
So, when the new baby arrives, next step will be to PIMP IT!!!  Watch this space, boys and girls!!

Today's Subjective Rating: Pretty good and on an up-swing

Most days, someone says to me; "You should write a letter" or "You should ring and complain".  Ladies and gentlemen, if I did that, I wouldn't have any time to do the things that frustrate me in the first place!!  So here's my first (almost) daily account of what was a pain in the hole for me today.

Scene of crime: Manorhamilton, Co. Leitrim
I went to the Bee Park community centre for a meeting with 3 other women, one other of whom was also a wheelchair user. Lucky us, we chose a Friday for our meeting - as the the folks signing people up for salsa classes, a local market and a men's group.

Offence #1: No accessible parking spaces left.  Parked near a door, but cars either side too close to allow wheelchair up to my car door.

Offence #2: Doddery old fella tries to help me into my wheelchair and call my guide-dog to him as I struggled out of the car with my crutch

Offence #3: After the meeting, attempt to leave the building with dignity impaired by three dogs hanging around outside the front door.  One collie-type pup was not on a lead, nor did the owner have a lead, nor did the owner see why their puppy couldn't bark, jump and play with my guide-dog as I tried to manoeuvre out onto a slope and round a corner.

Offence #4:

Offence #5:
Double set of double doors with zero turning space to get into bistro which is otherwise lovely and has gorgeous staff

Offence #6: My friend having to bring me down a rough alley and through a back door WITH A STEP to show me her "accessible" studio because the managers of the centre think it's better for the large front doors with level access to be locked.  God knows, if they were left open, people might just walk in and look at artwork.  Perish the thought.

Today's Offence Count = 6
Overall Subjective Rating = Moderate to Good

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