Monthly Archives: May 2014

Adventures of a Sociologist

This week has been a productive one dare I say it. Although looking at my diary I was a little depressed to see that I had three hospital appointments within a 48 hour period. I have began wishing that health care had loyalty points like the Air Miles scheme. Seriously if it did I reckon I would probably have made it round the world by now in first class style. As it is I have to content myself with a lukewarm cup of tea and a slice of dried out toast in the cafe at the hospital.

At the moment I dread my medical interactions. My case is managed by three teams, all of whom have differing Ideas about how to manage my care and treatment. A few weeks ago we had the great, ‘Who is responsible for swabbing the pressure sores on Anika’s foot?’ I rolled up for my regular hospital review which includes any arising issues. I dutifully mentioned my sores. I had not been feeling that great and my legs were stiffer than normal even with the high doses of muscle relaxant drugs that are pumped directly into my spine. I have to concede that yes, pain does make spasticity worse.

One of the specialist nurses took a look and suggested a swab, and then had a mini debate about whose responsibility it was to do a swab of the offending wound. I thought this seemed a little petty. Inwardly I fumed, I don’t care who does it, you, the Queen or even God, whilst outwardly involved deep breathing and keeping a tenuous grasp on my cool. It seems that the swabbing process is not as simple as you might expect. The physical act is simple enough. Lightly introduce small cotton bud like implement to wound and put it in a tube and send it for testing; no big deal. The issue is, ‘Who pays?’ Apparently GPs are charged by the hospital if a swab is done there, whereas if it is done at the practice there is no extra charge. This, as one of the hospital staff pointed out, is far more economical. Also, if they didn’t swab they would not be treading on the toes of the other teams treating me. To cut a long story short, the swab got done and showed an infection. I took the required medication, (it was simple really), I am newly invigorated thanks to antibiotics and ready for a challenge.

This is just as well as I am going to the British Sociological Association’s council meeting on Friday. I started planning for this a month ago and it is only one day in London. The thing is disability, particularly mobility problems, can turn the simplest journeys into a Herculean task. I read, ‘Around the World in 80 Days’ as a child and watched Michael Palin’s 90s recreation of it many years ago as my family were glued to it. They all have a wanderlust that in adult life I have singularly failed to acquire. For me London is a positively exotic destination. When you have to book Boarding Assistance for your train a week in advance and have to arrive 30 minutes before it departs, a day out begins to feel like a package holiday. Also, if I want a specific wheelchair accessible taxi I may have to book it 14 days in advance to avoid the special school and social service transport issues that arise during rush hour. At times my days out and trips to conferences begin to resemble one of those holidays ‘On the Edge’ you see on TV.

Having made it to London, I then had to deal with the people that I met there! The taxi that was taking me from the train station to the venue, dropped me off at the wrong destination. As I looked at the high rise flats I began to question if this was a suitable venue for our meeting. Now, I am not one of those disabled people that gets ratty if you try to help them. I frequently look a little bewildered and unsure when my face is at rest, so am accustomed to Good Samaritans offering assistance. This happened on that day.

A very kind lady buzzed me into what turned out to be residential flats and not the conference centre I was expecting. We quickly established that I was in the wrong place. She was reluctant to leave me in the hallway, as this is a security risk apparently, so she grabbed my handles, pushed me down the road and advised me to wait in the reception of a children’s soft-play area two doors down from the flats and advised me to wait there until my fellow Sociologists arrived for our meeting. She then nipped over to Tesco Express to get me a cup of coffee, I took the opportunity of her leaving to come out of the soft-play area and discovered where I needed to be was only around the corner.

So if you see a 30-something in a bright orange wheelchair, looking a bit bewildered in London one day, it’s probably me. And I only drink tea!

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Non-Lateral Thinking

Yesterday, I had my long awaited visit from my local NHS wheelchair fitting department. Several months ago now people began commenting on a deterioration in my seating posture, I was slowly becoming banana shaped and was referred for a lateral trunk support to be added to my wheelchair. Those of you with disabilities will be all too aware of the importance placed on good posture. For my non-disabled readers I will provide a bit of an outline.

I have cerebral palsy, my condition is caused by damage to the part of the brain responsible for movement and coordination. This means that I cannot sit unsupported. Strenuous efforts as a child were made to achieve this ability in physiotherapy sessions, without success. The therapist would sit me on a square box stool with no back, it was a kind of sedentary, special needs, white knuckle ride. I would grasp the edges of the box, using my hands to maintain my position. There were other things we were told to pay attention to as well, this was not a passive experience, there was no time to chill out. “Feet flat, bottom back, back straight, head up and in the middle with your lips together,” were the instructions. Every part of my body had to be thought about and in balance.

When a close friend of mine who also has cerebral palsy, had a baby, we watched open mouthed as he met every one of those dreaded developmental milestones on time or even early. It was a lovely, new experience for both of us to discover that ‘early’, so often a negative label in our babyhood, could have a positive spin as well. Toddlers really do just get up and take their first steps, sit on the floor and just play without having to support themselves with their upper limbs. I am still struck by the wonder and ease of it. Human bodies and brains seemingly obeying a programme, that somehow mine forgot to download or, maybe the files were corrupted in the attempt.

My sixth form years saw me perched precariously on a laboratory stool holding the underside of the lab-bench with one hand. This was all that stood between me and a violent reunion with some classic 1960s flooring. I had to give this up in the end and use the provided special needs desk and chair as yes, even I can see you can’t do chemistry experiments safely with one hand.

I look back wistfully at the days when my wheelchair gave enough support for me to function well, when ‘trunk control’ was a meaningless phrase. I now gaze at my new reflection in the mirror, with my midsection encased in the metal and foam of my wheelchairs new addition. I look so straight I think someone must have subjected me to a starching. Only a month ago I transported two sheets of A3 artist board home by sliding them down the back of my chair and this seemed to do the same job, at a fraction of the price.

Getting dressed in my wheelchair this morning I wondered fleetingly who designs the appliances I use, because I have deduced one thing for sure, they have definitely never worn a bra, or tried to put one on, whilst sitting in my latest seating contraption. It took me three goes and I am thinking of putting in a requisition for a third hand.

Dyslexic, Uncovered

Last week I attended the Annual Conference of The British Socological Assocation (BSA), an event that brings together individuals from all areas of sociology. This proved to be a time of reflection upon my own journey to becoming a sociologist and the issues and barriers facing others that find themselves in a similar situation to me.

It has now been some ten years since I graduated with my degree in Crime Deviance and Society and ten years since I gained my Masters in Social and Cultural Theory, things could have been very different. I was never considered to be particularly academic as a child. I was the one who sat at the back of the class with a vacant expression. Well, I must have looked vacant anyway as I spent my formative years being told off for daydreaming.

Many of my regular followers know my background but here is a quick refresh or introduction for those of you new to my e-world. I have Cerebral Palsy, use a wheelchair and went to special school from which I made my escape aged 16 with no qualifications to speak of. I enrolled in a mainstream college and was diagnosed with dyslexia at 18. University followed. I am passionate about education, for me it is both the gift of, and key to, personal development and social stability. I often get accused of being more than a little obsessed with the education topic, such that when two close friends announced they were pregnant I was plotting their due date against the English academic calendar.

I am an August birthday, us summer-borns are something of a scourge on the educational landscape. My teacher friends tell me that “you really don’t want a class full kids like you.” We are you might say on the back foot academically speaking, invariably not quite ready for the work we are doing. We are the cake that would have been so much better with another five minutes in the oven. If you add dyslexia to the equasion, you can really feel up against it.

These days we are used to the ideas of inclusion and disability awareness. Last week I even came past my local primary school and noticed the school sign had a wheelchair using child prominently displayed. It has become the norm, no big deal, to have a child who uses a wheelchair or a walking frame in mainstream school and there would be an outcry if adjustments were not made to accommodate their obviously differing needs, and rightly so.

However, there is one disability that, even in the inclusive atmosphere we see today, often continues to go unrecognised and therefore unsupported. Dyslexia is a condition that has been subject to a great deal of misconception and is much of the time on the margins of educational discourse. We see periodic surges of interest in the condition, debates over causes and even whether it exists at all. Dyslexia is all too often discussed only in the context of academic learning and something that is only relevant to childhood, a problem that disappears with the end of compulsory education.

So what is it like to be dyslexic? In what ways does it affect the individual? It is something that is different for each person. Every dyslexic I have met has their own, sometimes seemingly unique, problem areas. Many have some amazing strengths as well.

When I was a child dyslexia felt like being in my own world. It always felt like I was missing something that was obvious to everyone else. At my best as a child I felt like I was 30 seconds behind the others in the room. In school, classroom activities are structured around how the majority learn. This can lead to the classroom becoming a very bewildering place for dyslexic people. In my life I have seen very intelligent people who are disinterested in learning, have little self worth and feel like they have nothing to offer, purely because the current system at its best puts some of those in it at a disadvantage, and at its worst condemns them to fail from the outset.

Of the multiple diagnoses I have I find physical disability frustrating, depression frightening and dyslexia embarrassing and loaded with social stigma. If I had the choice to remove one of my disabilities dyslexia would be the one I would choose without a second thought. There are some I know that think having dyslexia is a gift giving them creative flair and problem solving skills. For me it was like being in a cage. Before the dyslexic label was applied to me and I got appropriate help I used to think I would die in my own mind. In my more wry moments I have thought that my being dyslexic is living proof that God has a sense of irony. Writing is the one thing I am good at, but I need help to do it. I was having a bad time in hospital a few years ago that resulted in my having a long-term urinary catheter. While it was being fitted, something I had resisted for years, I remarked to the consultant, that if I were to find myself in hell for me it would not be fire or ice I would just be catheterised while simultaneously being made to play scrabble.

Dyslexia with the correct support does not have to be a barrier to achievement. It is not all that you are. Whether you are diagnosed as a child or as an adult, there is help available and improvements can be made at any age. However to enable this, dyslexia has to be recognised as something that affects people across the board, making it not just an issue for educators but one for other walks of life too.