Monthly Archives: July 2013

The Great Leveller

Mark the day……… I have been waiting two and a half years for this moment. I finally got to cut the ribbon at the official opening of what has become known as “Anika’s toilet”.

I’m serious, we had a cake, ribbon and sparkling white wine to celebrate, with an audience of 12, two of whom had travelled about 50 miles to be there. The only thing I didn’t have to do was a test use of the facilities with everyone watching, although I was photographed flushing it.

I will tell you how this moment came about. I had been volunteering with the Dyslexia Association of Staffordshire for 4 years, and also receiving support for my academic writing from them, when 3 years ago they were in financial difficulty. Fortunately, they were able to find cheaper premises to reduce overheads and moved there in January 2011. However, there was a bit of a snag, the new premises had no wheelchair accessible loo. This was to make life very interesting for me. In order to continue volunteering, I had to limit my fluid intake for 12 hours before going in and continue limiting my drinking for the time I was at the centre.

It gets better, at lunch time the centre manager and I would undertake a mini expedition to the local supermarket which had accessible facilities. Well, they were accessible if you could find the person with the key to the padlock on the door. The first time I saw the size of the lock I wondered what else they were hiding in there?

These expeditions lasted for over 12 months and resulted in many a lecture from health professionals who couldn’t understand why I persisted in volunteering in a place without suitable facilities. They continually reminded me about the danger of urine tract infection and catheter block-offs if I did not have sufficient fluid intake. I am fascinated by people who think like this, as well as the ones who think that since the implementation of Britain’s landmark Disability Discrimination Act almost two decades ago, some kind of architectural magic occurred and all buildings became wheelchair friendly, a state that we are still many years away from achieving. Thus I have to point out that if my life was determined by the provision of suitable facilities then I would be at serious risk of being bored, depressed and home-alone.

Last year I had to admit the health professionals had a point after fighting off a particularly nasty urinary tract infection. I had to stop attending the centre and received my support at the local library which, being a new public building, had an accessible loo.

Such became our obsession with toilets that one morning as Louise (my support worker) was pushing me into the library she noticed a sign attached to the glass door that said, “Apologies for any inconvenience – due to repair work, the W.C.s will not be open to the public today”. We arranged ourselves on our usual desk and Louise went off to find out more about this closure.

“Excuse me”, she said to the librarian, “is the disabled loo closed too?”.

“Too?” queried the librarian.

“Yes, your sign says the loos are closed to the public due to repairs, I just wondered if that included the disabled one too.”

“I’m not sure what you are talking about?” said the librarian with a puzzled frown.

“The sign about the loos on the way in.”

“Could you show it to me please?”

Louise patiently took the librarian to the front door and pointed to the sign.

With a kind smile, and speaking slowly the librarian read aloud, “The sign says, ‘Apologies for any inconvenience – due to repair work, the P.C.s will not be open to the public today’ dear.”

After apologising profusely to the lady, and laughing a lot at the error, Louise returned to me and told me what had happened.

“Well Louise, it must be contagious.”

“What is?” she asked.

“Your dyslexia,” I replied.

This story has done the rounds with my family and friends now and still makes me chuckle when I think about it. It is reassuring to think that we can all make these sorts of mistakes, even the woman who corrects my spelling because of my specific learning difficulty.

Flushed with success!!
Flushed with success!!

Doctor Doctor, I have a pain in my foot


I was 11 years old when I realised that the type of disability you had affected how people saw you. I had of course grown up with people pitying me and once a woman pressed money into my hand as I sat in my wheelchair whilst parked outside a shop with steps, waiting for my mum on a Saturday morning. A memory that makes me squirm uncomfortably to this day. Similarly, there was a time when my parents bought a cane chair from Argos and while we were standing in the street with the plastic wrapped chair, a passer by enquired if she could buy a ticket – she thought we were raffling the chair for charity.

These were isolated, bizarre, funny stories that we laughed about and shared with friends. When I was talking about this with another friend with CP, she told me she had been given a Scottish five pound note in a similar incident. I have to say I never elicited that amount of generosity, even when a tartan knee blanket was added to the equasion in winter. This experience of the pity of others was clearly a common theme amongst my peers in wheelchairs.


At this time I could still manage to walk short distances though I looked as if I had had a very impressive night on the tiles. This, combined with an impressive fall, had resulted in a very painful ankle. After a lengthy wait in Casualty we were ushered into a cubicle and a young doctor arrived. I should tell you that I was in my Blackbird wheelchair (the children’s chairs at this time were either black, blue or fire coloured and, for all their sleek sounding names, had the style and poise of a Reliant Robin). After glancing at me the doctor turned to my mum to ask what the problem was, so she told him about my fall. Bending down he asked me to stick out my tongue which I obligingly did, he continued by asking me to push his hands away, grip his fingers and then close my eyes and touch my nose.

After these bewildering instructions, he turned back to my Mum and asked, “What is her mental age?” Confused by this point she replied, “Eleven, she’s eleven.” The doctor looked decidedly irritated and bending down to me he asked, “What is 2 x11?” “Twenty-two,” I promptly responded. At the time this was the only part of the 11 times table that I knew!

This story has passed into family legend as one of the strangest medical encounters I have ever had for what was, in the end, a sprained ankle. Coincidentally, it was also the year of the Oscar-winning performance of Daniel Day Lewis playing Christy Brown, the writer and artist with cerebral palsy. I suppose the working hours of junior doctors meant he did not get to the cinema much. Perhaps if he had seen the film he would have asked me to write the answer using my foot which, even when pain free, is not similarly gifted.

Have Chair, Will Travel

Over the years, travel with a wheelchair has provided friends and family with a good laugh and left me with plenty to write about. I have found that interesting things tend to happen when I am out of my own environment generally. Add jet-lag to the equation and things start to get interesting!

Over the course of my childhood I visited the USA three times. Our family holiday to Vermont really sticks in my mind. We arrived at our first stop, a quaint little guest house by the name of “Mavis’s”, tired and jaded after a long flight. I went into the bathroom to use the toilet and, in the process of standing up, I put my hand on what I thought was a wall only to discover it was in fact a pristine white shower-curtain. Unfortunately I only realised this when I was lying half in, and half out of the bath tub, draped in the aforementioned curtain, the supporting pole of which had cracked me on the head on the way down!

This is not to say that all my state-side adventures were negative. They were, in fact, my first experience of integrated design. Aged eight (1986), I stared with wide-eyed incredulity at an all-weather, outdoor, “stair-lift”, designed to descend 200 feet over a cliff face enabling my family and I to experience a boat trip under Niagara Falls. Coming from a country that, at this same point in time, confined it’s rail-travelling disabled citizens to transit in the guards van, with the luggage. The Niagara “stair lift”, along with that other state-side invention the “handicapped bathroom” was a mind blowing experience.
image
It amazes me that, more than 20 years on from my experiences in the USA, the UK has yet to achieve even half this level of seamless integration.

Recently, on weekend educational seminar, I began to wonder if Iain Duncan-Smith had struck a deal with the hotel I was staying in. Within an hour of arrival, I had already been forced to undertake something that resembled a Paralympic event to get into my room with my luggage. Then, my leg spasmed while I was trying to get out of my chair onto the kingsize bed resulting in the emergency cord winding itself round the heel of my boot and alerting reception. (I have something of a reputation with pull cord alarms. – I was once in hospital, trying to undress, and I got my arms tangled up in a mixture of bra straps and intravenous drips, resulting in my having to pull the assistance cord using my teeth). It seemed the demon had struck again! Fortunately, the lady on reception was quick to call and instruct me in how to turn the alarm off. It was at this point I learned that the hotel room designers had, it seemed, not planned for a solo disabled traveller.

The alarm “cancelling switch” was on the other side of the bed and there was no room for my chair to fit down the gap between bed and wall to deactivate it. With the alarm ringing in my ears I threw myself onto the bed, disregarding everything I had been taught by my paediatric physiotherapist about the need for “control”, and proceeded to “commando crawl” my way towards the headboard where the off switch was located.

I rather ungracefully achieved my goal and wondered fleetingly if my new found abilities would threaten my eligibility for Disabled Living Allowance – if observed.

One of the things that frustrates me about welfare reform is that the people reforming and implementing changes to disability benefits have probably never found themselves sitting in an empty bath with their clothes on to see if using the bath with the adapted grab-rails is A) possible and B) safe – the answers being “just about” and “not very”. (We’ll excuse them trying this stark naked and wet!)

The idea that the social change and inoculation policies implemented in recent years somehow reduces the need for benefits like DLA is, I have to say, lost on me.

When I have a whole year of travel on public transport without significant access problems or I can book a hotel room that advertises that it has the wheel-in shower I need, and be sure that yes, it really does, perhaps I will think again!