Too Much of a Bad Thing

One Sunday night about 18 months ago there was a knock at my door, I opened it to be greeted by a smartly dressed young man. He proffered his badge and informed me he was working to collect donations for a cancer charity. He gave me a statistic that one in three people will be affected by cancer during their lifetime and went on to ask if I would like to donate money regularly to fund research into cancer and its treatments. I responded that I would give money regularly to cancer charities when neurological disability such as cerebral palsy got the same level of publicity and financial backing.

I have to confess, it had been a bad day. I was coming to the end of my battle with Social Services to obtain support to enhance my quality of life, give me a purpose and help me achieve some life goals. Whatever I did, I felt like I was falling through the cracks. I felt very vulnerable with only family members and a bit of private support I was able to fund with my Disability Living Allowance. It exasperated me that people grasped the need to provide good support services and treatment for cancer but seemed to be blind to my situation.

However, three months ago now my political stance regarding cancer charities came back to haunt me in the very worst possible way. My mum, who had been ill for some months, was finally diagnosed with a rare form of cancer. You see the adverts on TV of people falling backwards having been hit by the tsunami of their diagnosis, that’s exactly what it was like. Cancer has always been in the background, like the mist and fog which comes with the onset of winter. The women in my family carry the predisposition to develop breast cancer, lumps, bumps and breast changes all of which were openly discussed. I was almost blasé, when my mum told me that a breast biopsy had revealed a high risk of malignancy and she had decided to undergo a mastectomy.

I have to say mum sailed through the whole thing; applying the same logic and fortitude to her recovery as in the past she had to my physiotherapy, that good old ‘no pain no gain’ ethos. Within a month she was back to helping me with physical tasks and even lifting my wheelchair in and out of the boot of the car, not medically recommended. I have to confess to breathing a sigh of relief as the risk, in my eyes, was gone and the panic was over.

Two things are interesting about the current situation: one, the cancer was a type that was entirely unexpected and two, the diagnosis has led to some odd conversations with my mum. For example, immediately after announcing that she had cancer she told me not to worry as my dad would be able to epilate my legs. This was the first of my personal care issues that she reassured me that dad was going to learn to support me with. I find it fascinating that of all the things she could worry about, leg hair was a priority.

I have now found myself judging mum’s health and wellbeing by whether or not she comments on my posture. Historically she has been like a human spirit level when it comes to how I sit and stand, whether my clothes are on straight and if my trousers need pulling up. When she has been really poorly, this level of awareness disappeared and I thought I would find it restful, but found that I do not. I have resolved never to internally whinge about this ever again.

Similarly, now dad has taken over many of the household chores he has begun to apply his engineering training and logic to various scenarios. He has a complex spreadsheet to help him organise the weekly food shopping, column headings are: item; need it; got it. Despite this he managed to forget the milk recently as they fell off the end of his sheet. Interestingly, mum has noticed that the food bill has inexplicably gone up.

Mum has developed more of an understanding of the necessity for television, the lack of which created a 2 day stand off when she was allocated the 1 bed in hospital where the TV did not work. She had been in there for 7 weeks and felt isolated from the outside world. It proved to me that the little things really do matter.

Once someone close to you has this diagnosis, you feel that it is everywhere. Dad and I went to the canteen at the hospital and the lady at the till asked if she could interest us in a cancer awareness badge, I told dad that I thought we were aware enough of cancer without the need for a physical reminder.

Dad’s car previously used to be an engineer’s mobile office and now routinely carries 2 wheelchairs. It has begun to resemble a patient transport ambulance. Dad is now becoming as conversant with the lingo of hospital as mum and me and has to work out what to do when both mum and I have a hospital simultaneously, which has happened more than once.

Dads are much less tolerant of NHS idiosyncrasies, he will ask the question, “Why is that desk so high?” and “Why are all the bins in this hospital foot operated when half the people in here lack the use of their lower limbs?” Compare this with mum’s perspective that yes, in an ideal world there would be a low counter but we have more pressing issues so, we have to pick our battles wisely.

The transition of moving from mum’s care to my dad’s is taking some adjustment for me. Dad and I are not so polished as my mum but, like many British institutions, we get there in the end.

The Rules of this Sociologist’s Method

Last month saw the start of a new school year. All over the country there were transitions occurring, there were children commencing their primary school education, some were moving from primary to secondary school and others from school to college or university.

The last two decades have seen the increasing commodification of the education system. Newspaper articles are now full of comments about parental choice, school league tables and problems related to catchment areas. There have even been stories in the media about parents moving and converting to a particular religion, in order to obtain a place for their children in the school of their choice.

This was a far cry from my family’s experience with me. A few years ago I had an attack of curiosity about my early life, my diagnosis and how it had shaped the person I had become; I ordered a copy of my medical notes from birth to 5 years of age, I have to say that it made very interesting reading. I opened up the folder and discovered what read like an episode of Casualty, and yes, they really do write things like, ‘Crash called.’ I was quite surprised to discover that I had had an entire day with no breathing problems at all and that the crashes only started on my second day of life.

I was resuscitated a scary number of times, to that end I am amazed that I am only this brain damaged. Almost 2 years later I was eventually diagnosed with cerebral palsy, coming after a ridiculous battery of tests, the paediatrican insisted on ruling out other conditions, metabolic in nature. This fascinates me as Theodore Woodward, Professor at the Maryland School of Medicine in the 1940s once said , ‘If you hear hoof-beats, think horses not zebras.’ and cerebral palsy is most definitely the horse associated with premature birth and oxygen starvation.

A little over 12 months after my diagnosis my parents were told that it would be best for me to attend the local special school. There was no particular discussion about any other options and obeying medical advice meant you were perceived as a good parent wanting the best for your child. I have friends whose parents questioned advice, or who didn’t follow it and they were talked to as if they were failing in some way. It seemed aspirations had to be kept realistic. My mum once told me about a conversation she had with my then headmaster, he related a story about a pupil who had expressed a desire to become a professional footballer when he was older. The headmaster thought that to collude in such a dream was to be ultimately cruel. However, I can’t help but think that this was a very black and white view, after all there are many children who express desires to become astronauts, nurses, train drivers, etc and who never ultimately become these. These childhood dreams are a way that we explore possibilities and parts of our personalities. To rob a child of this was I think equally as cruel.

When I became an undergraduate sociologist and began learning about Emile Durkheim, I was struck by his idea of using deviance as a form of social measurement. The use of ‘deviance’ to construct ‘the good parent’ was a prominent feature when I was younger; names of parents who did not conform with medical advice would be “hinted” at in conversations between staff, both teaching and medical. The progress of us children would be compared. I for example had a heel strike, this seemed to be a comparatively rare, but desirable phenomenon, most of my fellows walked up on their toes due to tight hamstrings. I can remember my walking being described as beautiful in this regard. The heel strike was apparently an indicator of my parent’s compliance with my physiotherapy regime.

Actually, I have admiration for my toe walking contemporaries, as for the last three months of my walking life, I became one of them; stiff and sore, every step was truly agonising. A lifelong friend with CP, herself a confirmed toe- walker however, tells me that your feet get acclimatised to an extent when you have done this from a young age. Yes, there is soreness but somehow she keeps going. At the age of 15 she was offered an operation to flatten her feet and turned it down, because in her mind she wasn’t broken and did not need fixing. For me it was different, I was always in pursuit of “normal” it obsessed me in many ways and when my grip on it faltered, I confess to throwing every intervention and drug at my body to make me better, or at to least arrest my decline. This is something that I regret in many ways as I often feel like I have become so defined by what might have been, that everyone seems to have missed what was.

I think a lot about my early life and the way my parents were almost manipulated into making choices for me to retain the good opinion of medical professionals, even if this meant going against their own parental instinct. Physiotherapy was the be all and end all of my early years and mainstream education was off my agenda because of this, despite mum and dad thinking integration was a good idea.

My parents frequently say I could have been a doctor had I not had cerebral palsy. This is due to my ability to recognise certain medical conditions easily and understand the treatment and monitoring of them. My dad commented on this recently, when I was discussing some of mum’s medical tests and cancer treatment, to which I responded, ‘I think I would rather have been a journalist than a doctor, and I am only good at medicine because I have been around it so much.’ Sometimes it is like being in the shadow of a ghost or an older sibling; it can feel like you are spending your entire life trying to emulate or outrun them and put your own mark on the world. One of the big problems I have found is the scarcity of people like me. Growing up I had few role models and nobody I could particularly relate to, the only successful disabled people I remember from my childhood were paralympians, whilst I was a keen rider and swimmer and competed in both arenas I never saw myself as sporty, nor did I want to be like them.

In my last term at school, a physiotherapist asked me what I planned to do when I left school. I responded, “I think I’ll be a writer Miss”. She must have been very sceptical. It is the one dream I clung to through everything. Today I am a writer, journalist and sociologist although, not the foreign correspondent, flying off to troubled regions that I might have been. I have to think that on reflection I am, as the late Christopher Reeve said, still me!

My Official Birthday

The big day has arrived. I am now 36. Sarah, a lifelong friend of mine (we were on the neonatal intensive care unit together when we were born) is some 10 days older than I am. It is our tradition to go out for a meal on the middle weekend between our two birthdays. It was at this celebration that Sarah decided to remind me that as of today I (we) are officially closer to 40 than to 30.

The momentous day was marked by a new acquisition, my birthday present this year from my parents was a MacBook Pro. I had been lusting after one of these for over 12 months, being a fan of the iPad – in my opinion the most ultimately disabled friendly device you will ever find – I was keen to make the switch. However, there always seemed to be something that got in the way of my making the purchase. Anything with a Mac label, seems to cost about three times as much as a Windows or android operated machine, so it was a massive outlay and one that I never could quite seem to justify. Then the inevitable happened, Nuance, the computer company that makes the voice recognition software that I use to write, updated their software.

I always follow assisted technology developments via YouTube. I was impressed with the new developments in the software however, I noticed that the latest edition of Dragon NaturallySpeaking required at the very least windows 7.1. My home PC ran on the positively Jurassic Windows 7 and so I discovered that if I wanted to try the new Dragon software then I would have to update my PC, this was a scary prospect as I had been witness to several Windows 8 stress moments. Many people I know just can’t get the hang of the new Windows operating system. On occasion my dad will fill in for my support worker; we open up the document on his computer, a procedure that is usually followed by a five-minute rant about the fact that the machine wants his fingerprint and randomly seems to place downloaded files where you least expect them on the hard drive.

I have never really been a fan of Windows 7 myself either. The main Windows operating brilliance came when they developed the XP operating system. Had I known that the Windows 7 operating system was so different to XP I would have made the switch to Mac at that point. In the week I have been using Mac I have not once had an error message, or crash. Thus far I have found that even the voice recognition software I have had such a rocky relationship with, works better on a Mac which is interesting given that the same company produces the software for both systems. The Mac is just sleek all round – Steve Jobs I salute your immortal soul!

It’s been a week of changes all round in my household my mum is currently ill in hospital and my dad has stepped into the breach. This has been an interesting and steep learning curve on both sides of our relationship. I live alone and have done so for over 15 years. This situation occurred almost by accident. My dad’s job was going to be moving location from the Midlands to North Wales, and I somewhat petulantly refused point-blank to live anywhere that I couldn’t spell. I proved moderately successful at the independent living scenario first in sheltered accommodation, that was specifically designed for individuals with special needs and latterly in an adapted bungalow, which I inherited (without the adaptations) from my grandmother almost 7 years ago. Throughout this time my main support and assistance has been provided by mum – who has hovered in the background providing physical support with tasks like laundry, cleaning, transport and more recently even supplementary medical support when my feet disintegrated slightly and required regular medical treatment and dressings. It is fair to say that she did a fantastic job! The dressing she applied thereafter more durable than those put on by the professionals.

It has been interesting and eventful to watch my dad take on his new role as provider of care and support. I had never really thought about it before but disability and its management seems inevitably to fall to mothers, and mine is particularly good at the mundane organisational requirements that are needed to live successfully with a long-term disability. This week my disabled parking permit (known in the United Kingdom as the Blue Badge) is up for renewal. The process is simple enough, you go online, fill in a form, then take proof of entitlement, a photograph and £10 in cash to your local council parking services department.

The week before my appointment, I looked out my birth certificate and the preregistration form I had already completed. All that I now needed was proof of my entitlement, birth certificates and photographs, on Sunday night I looked out the additional necessary documents and put them on the kitchen table. I had my birth certificate, and for some reason assumed that my dad had got the letters proving my entitlement to the mobility component of the disability living allowance. At my house, I asked dad if he had the letters I needed to renew my application, he responded in the affirmative. So, you can imagine my surprise when we arrived at the local council offices to discover that my entitlement letters had been left in the house. We had to retrace our steps and plan the journey for the second time. All was well in the end, but the procedure did lack my mum’s finesse!

A Dark, Divided Century

A few weeks ago I went to a local history event to mark the centenary of the outbreak of the First World War. The idea of the event was to commemorate and explore the different aspects or the conflict and look at how it has shaped the society we live in today.

There were living displays, men and women in period dress demonstrating everything from joining up for the Kings Shilling, to examples of battle kit that was issued. I have to say I was more than a little shocked at how meagre the kit was, it seemed to consist of little more than a scratchy woollen uniform, ration tin, shoe cleaning kit, a gun and a tin hat. It was both scary and poignant to think of thousands of young men, some little more than children, despatched to a hostile frontline.

Soldier's kit

The railway station where I live has remained remarkably unchanged over the last century, in fact when I am waiting on one of the three platforms to go off on my travels it has many times made the past seem somehow closer when I am on the platform. If you removed the electric digital announcement screens, it would be like going back in time. The ghostly figures boarding trains in their thousands become tangible beings; the ones who boarded a train compelled by social expectation to be men and fight never to come back. The entrance to Platform One now has a war memorial in remembrance of those who worked on the railway and were lost in the conflict.

The Great War, as it came to be known, saw change and development on several levels, social, technological and medical developments reshaped our society. The years leading up to war had seen growing support of the women’s suffrage movement that campaigned to give women the vote and afford them the same rights and opportunities that were available to men. However, war saw the suspension of political protest and direct action. Women took on a new place in society, they worked in jobs that were previously considered to be the preserve of men, they stepped into the breach taking on dangerous jobs working in munitions, nursing and driving ambulances on the frontline, proving equal in worth and ability to men. For women, war became a means to demonstrate the need for equality and recognition, one of the few positives, yet unintended consequences of war.

The event I visited had several stalls each chronicling the different aspects of life in war time. It was at one of these that I came across a period actor talking about developments in medicine that were a consequence of war. He talked about Walter Yeo, a sailor who sustained massive facial injuries in the Battle of Jutland. Yeo underwent pioneering treatment under the care of the groundbreaking surgeon, Sir Harold Gillies, who developed skin grafting as a way of treating individuals with serious skin wounds or burns. Walter’s face was painstakingly rebuilt over many years. Whilst Yeo was still described as having a severe disfigurement, he had significant function returned to him.

Walter Yeo (courtesy of Wiki)

Professor Roger Cooter wrote about the impact of war on medical advancements. He discussed how the First World War created an opportunity for medical development due to there being a substantial number of combatants presenting with very similar injuries.

There were 2 million disabled veterans who returned home at the end of World War One, who suffered a variety of injuries resulting in long-term disability, both physical and mental. This war made disability more visible and a pressing social issue. It resulted in the opening of the original poppy factory in Richmond in 1922 closely followed by Lady Haig’s poppy factory in Edinburgh in 1926. The idea behind both sites was to employ men who had suffered life-changing injuries in the conflict to provide them with a livelihood. This was the first time in history that society began to accept disability as part of social life and its responsibility. Disability through wounds became seen as almost an honourable state with the Silver War Badge being issued to soldiers who had been discharged due to their injuries for their service.

I am grateful for these individuals who, unwittingly, blazed a trail for me. They helped to create a world which was of a mind to accept me with all of my physical limitations. They fertilised the idea of an inclusive society.

I will remember them.

A painting I did to commemorate the centenary of WW1
A painting I did to commemorate the centenary of WW1

 

The 2nd of my Remembrance paintings
The 2nd of my Remembrance paintings

Disability, Fashion and Moving in High Society

The first magazine feature I ever wrote was about disability in the world of fashion, this was a few years before BBC Three’s Britain’s Missing Top Model in which 8 young women with a range of physical disabilities competed to win a fashion shoot in Marie Claire. I had never seen bodies that resembled my own in the world of high fashion, so it became a groundbreaking moment for me.

Previously, the disabled body was confined to the pages of disability equipment or specialised clothing brochures. I was a star of one such photo-shoot for a range of special needs tracksuits, all zips and elastic, functional yes, but certainly not catwalk worthy. I did however, borrow the zip concept recently.

Skinny jeans have become a bit of a nemesis for me. I have tried to acquire the art of wearing this figure flattering item only to be defeated by my lack of body flexibility. Now skinny jeans seem to be remaining a high street staple so I wanted to find a way to make the look work for me. I took my 3 pairs to a local alterations shop, explained my problem and asked if the jeans could be fitted with a zip from the ankle to the knee to enable them to be taken on and off more easily. I was thrilled with the result, a perfect blend of function and style. The alterations cost more than the jeans themselves, but it was definitely worth it.

Adapted skinny jeans

Having a physical disability can all too often mean that style and fashion are denied us, or come at a heavy price. Earlier this year I developed ulcerated feet and I was told in no uncertain terms that my stylish ankle boots had to go and be replaced with orthopaedic soft fabric sandals. I was somewhat put out as I thought my suede/ leather flat ankle boots were sensible enough. From the look the podiatrist gave them you would be forgiven for thinking I had rolled into her office resplendent in six inch wedge platform sling backs. It’s funny but shoes were always one thing that really made me feel different, the thing that no matter what I did, marked me out as disabled. I would be wearing a nice dress and the look would be ruined by my specialist orthopaedic boots, clunky monstrosities in a very limited colour range of black, blue, brown and the much coveted red.

In my life normal shoes were a rare event, reserved for special occasions. I think I remember every pair of normal shoes I ever had and the event that each pair related to. For the wedding of a lifelong friend of my Dad I wore a green and while frilly dress and little black patent shoes. I was bridesmaid at a cousin’s wedding and I had a pair of white canvas pump type shoes to wear under my dress, then on family holidays to the USA and Denmark I had training shoes. I can remember saying once that the underside of my feet hurt after walking in my normal footwear for a while. My parents were puzzled and tried to determine the cause of my discomfort, after some detective work they discovered that it was the terrain itself. The soles on orthopaedic boots are thicker than average and I had never become accustomed to feeling the ground under my feet.

The ability to wear normal shoes was just about the one positive I found in losing my mobility. I no longer had to pay mind to the support my ankles and feet needed. I also didn’t have to worry anymore about how durable the sole was because yay, I wasn’t going to be wearing them out by dragging my feet. However, my joy was comparatively short-lived, I quickly discovered that feet that have been fixed in position by an orthopaedic surgeon do not necessarily comply with or like being introduced to heels. The one time I found a pair my feet could be cajoled into I snapped the heel off the left one when my leg went into spasm and the boot heel was behind the footrest. This resulted in several Star Wars related jokes about feeling the force. To add insult to injury my feet became chronically swollen due to my reduced mobility, so much so that I had to start wearing men’s shoes which are correspondingly wider. I saw the NHS shoe fitter and the made to measure results made my childhood shoes look positively hip. Even my Mum christened the boots the ‘Passion Killers’, which coming from her was a damming indeed.

My friend Lorraine, keen to help solve my footwear issues, told me that Evans one of the leading UK, plus size, high street shops, had EEE fitting boots available. It was a lovely experience to put on a pair of shoes that were meant for a woman. It opened up new possibilities in clothing; I could now wear dresses and I felt attractive. I was determined to hang on to my new acquisitions, I had over 12 months of fierce arguments with my podiatrist before ulceration forced me to give in. I agreed to give the Pullman sandals a go. I have to say I was pleasantly surprised, while definitely not Manolo Blahnik, they were not an assault on my femininity.

The Pullman Sandal

Last Christmas my aunty’s present to me was afternoon tea at the Ritz, we arranged to go along recently and I had a lovely day out with her. The Pullman sandals were donned along with my semi-designer dress. I have to say that I certainly did not feel out of place, clunky or unattractive, in fact I am beginning to think I was a posh Victorian and have inhabited high society in a former life. The Ritz had ramps for my wheelchair, the best dairy-free cakes I have ever tasted in my life along with an extensive range of teas, always a winner with me.

Aunty Sue and me at The Ritz

Rising to the Challenge

I am flying solo this week. Louise my assistant, who provides my academic support, is as I write Stateside and hopefully having a good and well deserved holiday in the sun.

It has been an interesting week all round in terms of my support needs as my parents, the usual provider of my daily support, have been on a trip to Italy. My Auntie Sue and my mum’s friend Maureen stepped in to fill the gap. With all of the absences, I decided to take the opportunity and set myself a little challenge; this blog post is brought to you via voice recognition technology which is something I have dipped in and out of over the years, with varying levels of success. I put on the headset, stare at the screen and many times my head goes blank. I think this has more than a little to do with my school experiences, allowing me to dictate work was considered somehow as giving in and allowing me to be lazy. For my generation of people with disabilities, aids in whatever form were to be used as a matter of last resort, and something to aspire to be without.

I have found that it is a completely different experience compiling something in your head and dictating it onto the page, than it is to type manually. I always feel somehow disconnected from the process; it never seems to flow as well. I like the tactile element of crafting something and if that gets lost, I end up having to concentrate so much on the act of talking that I lose the thread of what I am trying to say.

I have casual conversations in person quite easily, but if I have to think hard, or repeat myself, my body and brain get all scrambled and a word will suddenly decide to stay in the “no mans land” that exists between my brain and my mouth. This gets very interesting when having a conversation with my Dad who has a significant level of hearing loss and misses part of what I say to him. At some points it feels like I am in the middle of a neurological war of attrition, with Dad’s responses usually along the lines of, “What, what did you say?”, “Can you repeat that?”, “Say again.”

The whole process of dictating also feels far more public. I used to have a horror of doing my university exams in this way. I remember on one occasion as always, I was separated from the other students. Myself, my support worker and the Invigilator were in a room, a grand looking affair with an oak table. As I took my place next to my support worker scribe, the Invigilator remarked that I looked pregnant with thought. What was really going through my head was, “Oh My God! He is going to hear my answer and judge its worth and mine by default.” a pressure my pen- wielding peers didn’t have, they got a pass or a fail in private.

For me, disability means that concepts like privacy, independence and personal choice are a negotiated, sometimes “grey” area. I get exited about software that promises this freedom, however nothing has been created that gives me this autonomy so far. The IPad has proven to be the biggest leap forward so far. I can access ebooks, talking books, notes and papers on something I can carry around in a small bag.

Like most writers, the things I write about come out of my own life experience, the difference is I never get to write alone in a cafe, in one of those moleskin notebooks so beloved of my writing friends. Well, I could give it a go but there is a good chance that when I came to look at it again, I wouldn’t be able to work out what I had been trying to say! Sometimes I wonder if in the future my notebooks will be unearthed by a social historian, or end up on some kind of documentary like the ones you see on BBC2 about the evolution of the written word. I never complete the process of writing alone, in fact in my case the act of writing can give me a story to tell.

A few months ago while planning an art journal page I came across the quote by the author Neil Marcus, “Disability is not a ‘brave struggle’ or ‘courage in the face of adversity’ Disability is an art. It’s an ingenious way to live.” For me, this sums up my own views of my life as a disabled person.

 

Positive Thinking

This week I have been feeling good, the type of good I had almost forgotten existed. This improvement is I think, in part at least, due to the reduction in healthcare appointments. My feet have as they say ‘got with the programme’ and made a concerted effort to heal themselves. This means that I can now dispense with the unfashionable, but I have to say very effective, plastic/rubber combo, sock device I have been putting over my dressings. This device has lead to some very odd moments in my bathroom. If I had a camera in the room I would have produced some very entertaining footage.

Sexy foot protector
Sexy foot protector

A few weeks ago I was due to go away for the weekend and still had not perfected the art of putting the device on solo, after much thought my mum suggested putting on a nylon stocking so that the device had more of a glide. I have to say it worked like a charm and thus a six pack of supermarket, basic brand nylons were added to my disability essentials kit. Catheters, wheelchair, medication, nylons and I am good to go. I have alway wanted to make a slinky exit from a shower, shrug into a crisp, white bathrobe with my hair wrapped casually in an equally white towel. Yes, my bathrobe is white. However, most of the time it has a black stripe in the middle of it where it has got caught up in my wheelchair wheel, which is not that Hollywood.

Recently while at the railway station I decreed that in my next life I want to come back as tall as I am now, but have the use of all four of my limbs, just so I could have the experience of walking down the platform with some cool pull-along luggage in a matching figure flattering, long coat. Try as I might, I have never yet managed to achieve this look sitting down. Tempted by the displays of colour-coordinated trolley bags, I have on occasion experimented with a pull-along bag. This has mostly just resulted in my damaging the skin on my hand as a result of its unplanned union with the metal baggage handle and one of the components of my wheelchair. I tried to get a long, smart, wool winter coat once but my comparatively muscly arms and thin body means that any long coat that fits my upper body, made the rest of it look like a sack of potatoes.

I read an article by a writer called Melanie Reid who broke her neck in a riding accident and now uses a wheelchair. In it, she talked about her feelings when she was able to stand and walk with the aid of a robot called Rex. This got me thinking about my own feelings such as, “Could I walk down a railway platform with my glamorous baggage in a robot called Rex?” I concluded yes I could, but it would not be sexy, which sort of defeats the object for me.

Some years ago, I saw a consultant who told me and my parents that it was my comparative height that had put me in a wheelchair sooner than my peers. My mum felt partly responsible as I get my height from her side of the family. As I pointed out though, I would have ended up in a chair anyway and at least the height I am, I can reach more things for myself.

For the last few years I seem to have spent an inordinate amount of time bouncing around different consulting rooms being told to accept deterioration, that I am getting older. I felt as though, all of the medical professionals believed that it was someone else’s job to help me. Six months ago a new doctor joined my GP practice, he was like a breath of fresh air. You could go into the consulting room, explain your problem and he would work with you to solve it, he didn’t want to have to refer you anywhere else. He understood me when I said that when I was well I could write (like this blog piece), but when I felt unwell I could barely get out of bed. He actually thought it was worth trying to get me the ability to write back, rather than tell me to accept the loss as part of my deterioration. He made me feel that I was worth the effort on his part. It was so refreshing having someone recognise that I had to have a point to my life.

It was this same GP who started me on anti-depressant medication, something that I had been hitherto too embarrassed to ask about. I was troubled by the thought that my personality would begin to be controlled by chemicals and I would lose part of ‘me’ and also by the idea that my ability would be regulated by drugs. It felt like one too many things to be dependent upon. I was talking to a colleague at a conference recently and something she said really put things into perspective for me and made taking the tablets less troubling. She said, “If you were diabetic and it was insulin, you would take it wouldn’t you?” The upshot is, I have taken them for about a month and a half now at the proper anti-depressant dose and I feel human, not like a dead person any more.

The friends I have made at one of my support groups tell me about getting tattoos done to mark significant events and milestones in their lives. I was a bit tempted to have one done, but I thought that there was too great a risk of an infection, or poor spelling if I had words. I settled for a silver bangle engraved with ‘Resurgam’ (I will rise again). Four days later I promptly dented said bracelet on the engraved word, getting out of my wheelchair. Ironically, I feel that this makes it even more appropriate for me, I am a bit battered, but still rising.

Wheelie Good Omens

I thought things were going well. It has been a whole three months since the accessibility equipment gremlins last came out to play, so long in fact that I was beginning to think they had been successfully rehoused. Alas no. I got up last Tuesday to the sound of a loud hissing noise, my brain hurriedly came out of bank-holiday hibernation. What the hell now I sighed inwardly?

Those who follow me regularly will be aware of all my gadget-related nightmares. For all of you newcomers, the bungalow I live in is about 40 years old and six years ago, when I inherited it, the inside was internally demolished and rebuilt, mostly by my Mum and Dad. The result was a very spangly looking ensemble, which was dutifully equipped with every gismo you can get to make living with disability easier. The result was very definitely rehab chic, open plan and pneumatic cupboards. There really was no (parental) expense spared. Everyone with disability knows the manufacturers always put a few extra 0s onto the price for good measure. The thing they don’t tell you about is the hell you will experience when all these bits of kit that make you more independent decide to break down. My life is punctuated with phone calls that begin “Dad can you just…..”. Things got so bad with my pushbutton front door, that when it stopped working for about the twentieth time I gave up and had it disconnected. There does come a point in your life when less really is more. I pointed out to my Dad, who was keen to give the door one last try, that struggle as I may with the average front door, once it is locked it will normally remain so similarly, when opened it will do the same and, save for an act of God, it will move between open and shut without engaging in small acts of rebellion.
Needless to say, the all singing all dancing door has now been officially downgraded and I have had about 8 months of stress-free living. Anyway, the hissing was coming from the bidet loo. Water was trickling out of the wash nozzle, even though the tap was off. My first thought was limescale, a big problem where I live, blocking the valve. I dutifully attacked the nozzle with a heavy duty limescale remover, but there was no improvement and loos are just about the one appliance you can’t live without. Meanwhile, my Mum had arrived to help with my household cleaning. She examined the loo, promising to send my Dad down when he arrived home from work.

I couldn’t help but think that something else going wrong with the house was a bad omen. I had a trip to London planned and I get a little sensitive when I am going travelling. I begin to imagine that these little things are a sign not to venture out. The loo was easy to fix in the end, it was just a washer, phew! Perhaps, my week would be fine after all.

Friday arrived and I had a knot in my stomach. My inner child briefly whined that London is big and scary and did we really have to go? Yes, I said, putting my foot down and dragging us both out of the door. I got on the train seamlessly, thanks to the lovely organised Virgin people in red that seemed to appear from nowhere proffering ramps. This has got to be the only way to travel. I felt my stomach begin to relax. I was on the train, there was only one stop, what could go wrong? I turned on my Daisy talking book player to make a start of, ‘The Bell Jar’ by Sylvia Plath. The machine’s automated voice informed me, “Low battery. Powering off in one minute.” Well I did ask the question. Let’s just say that I was relieved to have done the paperwork for the London meeting with my support-worker instead of trusting in technology.

Two hours on a train with nothing to do, other than to just sit back and wait for inspiration to strike. I figure it has worked for JK Rowling, then I really would be able to afford to write. I managed to grab one of the train staff as I desperately needed a cup of tea and couldn’t see any sign of the refreshment trolley. I asked for help from a passing member of staff in getting a cup of tea. This lovely young man went and got me one for no charge. This must be a week for good omens.

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!

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.