Following on from Part 1 I will begin with a journey through what my some of disability pains in the butt are.
As a consequence of acquiring GBS in April 2008 I have residual disabilities in my ankles and my hands. These have impacted my life in substantial ways.
Pain in the butt #1
I can flex my ankles well enough to drive, but not enough to stand and refine my balance unaided. I have a ‘Pringles’ balance – once I start falling, I can’t stop. I get around with Canadian crutches. Rather than being a biped I am like a chair (with 4 legs) or, in safe places, a stool (with 3 legs). I used to have a wheely walker but commuting with that thing on a train was a serious pain. I could ride only in the entrance area to carriages and had to sit on the walker for 90 minutes, away from heating or cooling. With the crutches I could get inside and get a seat – and get warm or cool.
My ankle malfunctions extend to making it necessary for me to lift my feet to avoiding them drooping, catching my toe, dragging, and stumbling off balance into a fall. This makes walking a deliberate and conscious affair. I look up at my peril and I also lose awareness of my walking at my peril. Walking is an intentional and conscious business that mostly involves watching where I walk, ensuring I lift my feet, and bring careful where I put my crutches. On a windy day at Echo Point a few years ago I inattentively placed my crutch foot on a small piece of a branch. It rolled, the crutch slipped, I lost my balance and fell.
Turning around is slow and inelegant. I am beyond the careless days of a smooth U-turn. Its 4-point turn mostly now – slow and deliberate.
I am slow at walking. I recently estimated by walking speed as 1 kilometre an hour. I used to walk at around 6.5 kph. I am, consequently, no fun to walk with. I have found well-intentioned companions almost fall asleep at that speed. I walk alone out of kindness. I have learned to divide my attention between watching where I put my feet and listening to audiobooks. I get through a lot of audiobooks.
The weird thing is that my ability to walk depends upon my shoulders, arms, wrists, and hands being operational. There have been a few times when pain in my wrists has discouraged me from walking out of concern that I might exacerbate a emergent condition.
Pain in the butt #2
One deficit in my stay in the rehab ward was getting an occupational therapist to work on my hands, which were contracting and locking up. We were able to save a decent amount of dexterity, but the only fingers I can straighten are my index fingers, and one of those doesn’t work well. Of my thumbs, I can press with the left, but can’t arch it back, and the right arches back but won’t press.
My grip strength is poor to boot. There are combinations of shapes, textures, and weights I can’t handle. They would be no hassle to a person with unimpaired grip and dexterity.
Handwriting is not in vogue these days, which is a mercy because it’s a slow laborious process for me now. Thank god for Notes on my iPhone.
Pain in the butt #3
The combination of the first two results in a draining effect when I travel. I am okay driving in the country. I don’t like city driving because of the cognitive demand I feel needed to ensure my reflexes can meet contingencies. City driving is stressful as it is. It’s somewhat more so for me.
Travelling by train is okay when I am sitting down. Around Sydney there are hazards getting up while the train is moving – either to get off or get on and find a seat. Getting on and off trains requires the use of ramps, which are always perilous affairs. The ramps are of a certain size and the difference between the height of the train and the platform varies.
Away from trains I have the challenges of unfamiliar walking surfaces. It still feels strange to walk through an unfamiliar area and not look around, unless I stop. I must watch my feet
The overall impact of travelling is an added cognitive demand to stay safe which renders the experience draining and unpleasant. It’s an exercise in almost constant risk management. As a result I don’t enjoy travelling at all now.
I have fallen only twice while travelling. I wasn’t badly hurt either time – though my dignity was badly bruised. I need help to get back on my feet these days.
Pain in the butt #4
Overnight travel is nightmarish at times. Accessible rooms aren’t. I have found only one that lives up to that name – at the Shearing Shed motel in Dubbo. It’s the only room where I felt safe having a shower without having to ask for any additional equipment.
Many accommodation providers make reasonable efforts but fall short of their intent because they just guess what accessibility means. Sometimes the guess extends only to a randomly placed handrail on a wall beside the toilet – placed too high, too low, or too far away. Such placements may be ideal for those whose dimensions (height and reach) match the placement of the handrail, but they are few. There’s a place in Canberra that has a sign on a towel rail warning it is not handrail. The actual handrail is placed exactly beside the toilet and offers no help at all. The sign speaks volumes about the mindset of the operators. And, yes, I did tell them. A year later nothing had changed.
I have been in rooms asserted to be accessible where there has been a hob at the shower entrance, no handrail in the shower. The risk with showers is that you never know how slippery the tiles are. They may be safe for people of normal posture, but the moment you make a lateral movement anything can happen.
I often must ask for a chair in the bathroom in the event the shower is accessible, which is rare. But it’s rare such a chair available. Mostly washing is a perilous process of washing with one hand while standing at the basin, propped up by the other hand – and nervous as hell that the floor might get slippery if it gets wet.
An accessible room should be designed in conjunction with an accessibility consultant. Neither government nor the industry has any interest in establishing a standard by which assertions of ‘accessibility’ should be measured.
Pain in the butt #5
Accessible toilets. I need the hand grips that are in the full-on accessible toilets and in the ambulatory cubicles. And here there are common problems.
Accessible toilets are frequently used by people who lack toileting skills, rendering them unusable when they leave. They are also frequently used by people who have no need of the accessibility functions. So, they are often either occupied or unusable.
Most modern buildings have a single ambulatory cubicle that is almost inevitably occupied by a person on a long break checking their Facebook, or some such.
I get the need to go when you must, and an accessible facility may be the only one available. But, please, check Facebook later.
On the road most accessible toilets are properly designed and are mostly usable. But now and then I come across unaccountably dopey set ups. There’s a town in NSW’s Central West with a newly constructed accessible toilet, but the pan was around a metre out from the wall and way too far away for the handrail to be of any use. The door jammed in the frame and had no handle on the inside. I got out with difficulty, but I didn’t dare sit down.
Pain in the butt #6
All the things I can’t do now are a pain in the butt because I now have to pay for what I could once do.
- I used to garden and do home handyman/maintenance things. No longer.
- I can’t move furniture.
- I can’t carry anything that requires 2 hands and walking.
Pain in the butt #7
I can’t maintain my love of photography as I used to because I now need to sit or lean. Now I practice ‘seat of my pants photography’ with my iPhone. That’s satisfying but now and then it drives me nuts that there are somethings I can’t photograph as desired. If I can’t park or sit in the right spot the thing I see and want to shoot lurks frustratingly out of my capacity.
Pain in the butt #8
I love reading. Before GBS I was spending $1,500 or so a year on books. Now my grip disability makes handling books a struggle and the act of reading a chore. Mercifully I have access to ebooks and audiobooks. I can still cater to my love of books, but I have lost that sensuous connection with the book itself. Ardent readers will know what I mean. The upside is that ebooks and audiobooks are way cheaper – which is good, because what I save on books can go towards paying for the services I can no longer perform.
Can there be an upside?
Don’t get me wrong. I don’t want to insist there can be no upside, and it’s all a sense of loss. The loss is real, and it is seriously a pain in the butt – across every dimension. It is serious loss too, and it can be injurious on a personal (psychological, relational) and financial level.
The upside for me is, in a sense, about character building. When you have a lot taken away you can’t cry endlessly over what has gone. You must reposition yourself. A lot of this is evident in public disability heroes, especially those who have made a name in sports.
I have to admit I am a better person now than I might have been, had I not acquired GBS. Now this is a delicate matter, and I do not want to suggest this should be true for everyone who lives with disability. This is just my personal perspective.
I am not here speaking for the disability sporting heroes – or anybody. I see disability heroes justly celebrating what they have achieved. But is it an upside or a compensation? Studies in trauma suggest that heroics can be a way of coping with unprocessed trauma. I don’t presume to know how any other individual comprehends their situation, challenges, and achievements. They must speak for themselves.
Disability is, as the name suggests, a loss. How we handle our losses is a personal affair. The net consequence is usually a loss, even if some gains are made. In calling those gains ‘upsides’ I am acknowledging that, depending on one’s values and philosophical orientation, there are opportunities to benefit as we respond to disability. But will those gains off-set the loss and lead to a net benefit? Probably not for the majority of us.
A few years ago, I asked myself whether, if I had access to a time machine, I would go back in time and not get on that train on that morning I became ill, and that illness morphed into GBS. I decided I would not. But that was an imagination game, and I cannot assure you, were it a real prospect, I would actually refuse.
What my imagined decision not to go back told me was that I had a strong sense of personal growth. I was forced to confront elements of self as I recovered and adapted. It would be an utter waste of a personal catastrophe not to grow personally.
That does not mean I miss what has gone. When I am in bed I am ‘normal’. When I wake up and get up the abnormal returns. I think this true for acquired disability, especially of a radical nature. We have a memory of what it was like before, and that will not be eradicated.
A few days ago, I was at Wentworth Falls lake for an early morning walk. I watched a woman walk by with an unusually elegant and fluid gait, and thought, “Gee, I used to do that.” Then I was off, slowly, eyes scanning where might next footfall would be. I walk there because there is an accessible concrete path, and places to sit so I can enjoy looking around and being there.