Tag Archives: Independent living

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.

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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!

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.

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.

Babel Fish Anyone?

I have to apologise to those of you who had a two-lined post delivered to your inbox. This was technological incompetence on my part and happened because I am at the time of writing this on a mobile phone, undertaking a weekend’s bed-rest trying to heel ulcers on my feet. I touched what I thought was the ‘save draft’ button and 30 seconds later realised I had published what was a very meagre post indeed.

I started the week feeling comparatively limber from a disability standpoint. This is, I think, due to the switch to British Summer Time and the lighter nights and mornings it brings. This is in addition to the mega-strong anti-inflammatories my doctor prescribed.

I woke up last Sunday to bright sun and a lovely breeze, this saw my independence skills sprouting anew. They have been a little dormant this past winter with one thing and another. It was what my mum calls “a good drying day”. I decided a change of bedsheets was in order as I was spending the afternoon at my parents’ house; meaning that my Mum could dry the sheets, iron them and put them back on my bed. This was the method in my forthcoming madness anyway. So how did I achieve my aim? The procedure goes thus:

1) pull back duvet.
2) fling self bodily onto bed in a starfish position.
3) Claw at bottom sheet until elastic pops off corner of mattress.
4) hold corner of sheet and roll to end of bed. This should successfully remove sheet for washing.

Begin the same procedure with the duvet cover and realise one minute in that the cover has buttons at the bottom and not the simple press-studs I was expecting. This makes for a much longer job and feels like Occupational Therapy. For a brief moment I am transported back 30 years to my first class at school. Along with the toys, learning aids and physiotherapy equipment there were a selection of fabrics stretched over a wooden frame all of which had different fastening. There were zips, buttons, toggles, press-studs and Velcro . There you would sit relentlessly grappling with whatever torturous ensemble came your way. I hated the buttons, and still do all these years later. They are what clinches me buying an outfit or consolidates its rejection, or in the case of the bedding situation vow to emerge undefeated!

This I did some one hour later when I put the lot on a boil wash. I rolled back into the bedroom to flick on a DVD. I hunted for the control in all the usual places and a few unusual ones, like my bathroom. Sounds unlikely I know but I have found it in there more than once. It was nowhere to be found, I gave up and went to have a cup of tea. The kettle boiled and all was silent, except for the washing machine in amongst the usual sounds associated with it doing its work I could detect an ominous ‘clunk’. The control had been gathered up in the sheets and had been merrily working its way through the clean, rinse and spin cycle. I was horrified, surely it would not survive and I was about to be plunged into televisual limbo, as the emergency control was at the top of the television set and tantalisingly just out of my reach. I thought I had just created the words first ornamental TV.

I retrieved the control from the drum, dried it, changed the batteries and pressed the power. I have to say I did this more in hope than expectation, I nearly passed out when the little red light blinked on and News24 came on the screen. This is a marvel and triumph of Swedish engineering as far as I am concerned!

After all this activity I felt like I deserved a bit of a treat. I ordered a box set of Law and Order I had never seen, just before I discovered ulcers on my feet and got told to rest and elevate them. I thought at least I would have something good to watch. I waited for the postman in great expectation, opened the parcel put the DVD into the machine only to discover it was in fact dubbed in French. Babel fish anyone?

(For an explanation Google ‘Douglas Adams’ and ‘Babel fish’).

Great Expectations?

How do you feel politically as a woman with a disability? I was sitting in my university interview frantically trying to think of a suitably intellectual response; the truth was that I had never really thought about disability in relation to personal politics. It was 1999 and my university interview, along with the last two years I had spent at my local sixth form college, was the first indication that things were changing.

I have cerebral palsy as a result of premature birth and have been a full-time wheelchair user for thirteen years, before this I was able to walk short distances. I am now thirty-four and growing up with a disability is, I think, a very different experience today than the one I had. In the 1980s and 1990s when I was at school this meant segregation at a special school. Every bit of school-life was, in some way, geared to being physically independent; you had to strive to do things for yourself even if it was very difficult or took a mind-numbing amount of time, the rationale being “We won’t always be around to help”. I remember getting up at an ungodly hour to get dressed for school, only to have to repeat the process in reverse a few hours later for swimming or P.E., to fit in socially and be seen as a success you had to be self-reliant. I often wonder now if perhaps this was in part a reflection of the Thatcher era, when one either “sank or swam”, the result of which was that I spent the best part of sixteen years constantly working to minimise and compensate for the problems I have. We live in a society that isn’t, even now very accepting of bodily imperfection, you only have to read some of the recurring debates about body image, size and shape that exist particularly in relation to the female form to see how pervasive and negative social attitudes can be .

My biggest ambition growing up was to be good enough to go to a mainstream school and when at sixteen I had the opportunity to be ‘mainstreamed’ I jumped at it! For me this made all the physiotherapy, surgeries and relentless droning on about independence and life-skills have a point. I saw this as my chance to be ‘normal’, to do things like everyone else. I spent two years working hard at not being a disabled person, I was finally getting the life I had chased that had, until then, felt like it belonged to someone else.
I began to feel socially restless; I have a brother two and a half years younger than me, who was beginning to have the freedom and independence you expect of mid-adolescence. I felt as though life was passing me by and I realised that if I didn’t do something about it I could still be living this life in 50 years, with everyone knowing where I was and what I was doing, becoming increasingly socially isolated as my friends got to grow up and I remained in a perpetual state of adolescence, forever waiting for life to start. There was talk of a family move to a new area and it was this that made me think about living on my own. The suggestion was not met with universal approval, “How will you cope on your own?” “Where will you go?”, “Social Services will never think this is a good idea.”

It was a very fraught discussion and I felt totally alone, as though nobody could see me as more than a collection of needs. Looking back now I can see their point, they had spent years being told about the need for me to be independent and self-sufficient. Goals were set and achieved and I don’t think that anyone ever really thought about what the end point of these efforts should be. For all the talk about independence I found that to suggest to people that I, an adult with a disability, could function outside of a family unit seemed as alien a concept as a fish breathing air.

The proposed move became a topic at regular meetings with my hospital consultant who sought to reassure my mother with the words, “Let her try it, if it doesn’t work out we can always try again later.” I knew that this was going to be a one time thing; that is one of the most stressful things about being disabled, people are watching what you do all of the time and judging your success or failure. For example, I know of non-disabled people who left home, only to return a few weeks later, they are not seen as failures or dependent and it does not define the course of their lives in the way that I knew could happen all to easily to me. People tell me that I am a perfectionist but I think this stems from constantly having to prove myself and show that I can make decisions. I have never had the space to get things wrong.

After a few months on the housing list I was allocated a flat. The move was a successful one and the ten years I lived in the flat were happy and productive. Living ten miles away from my parents provided space for a private life, whilst still being close enough for them to provide support. The decade saw “independent living” for disabled people become widespread, care and support increasingly becoming available to enable individuals with substantial disabilities and requiring high levels of support to live the lives they chose on their own terms.

When I left home I was frequently asked if it was because my parents couldn’t cope or
just didn’t want me around any more. By the time I left my flat, living independently seemed to me to have moved from an experience that I felt I had to earn the right to by making my body conform to the ‘able’ culture into which it was born, to a means by which success is measured. I and my parents are frequently asked if I live independently in a tone that implies I need permission.

For about four years now I have lived in a bungalow inherited from my grandmother which has added a new dimension to the interest taken to my living situation. Recently two health professionals standing in my bungalow in the small hours of the morning asked, “Has this been done out for you?” I had to resist the temptation to reply, “Evidently.” Of course, what they are really thinking is, “How does she afford to live here and who pays?” Having spoken to colleagues about this issue, I find they are shocked that professionals think these are appropriate and necessary questions to ask. The difference is that people think that because I am disabled they have a right to know.

Proof that Disability Awareness is on the Rise

I never stop being surprised by the odd and often intrusive questions I am asked in relation to my disability. I can get into a taxi for example, and before I have finished fastening the seatbelt the questions begin, “What have you done to your legs then?” In response I find myself doing complex mental calculations that take into account length of the coming journey, my mood, level of patience and the need to explain a neurological diagnosis to someone who may well have never heared of the condition I have.

On a bad day, early in the morning my response would be, “It’s just something I was born with.” in the hope that I can shut the conversation down and get on with my day unencumbered. If I have time on my hands or am feeling motivated to spread the word, make a difference and in some small way put a dent in expectations that ultimately bring about social change, you will get an answer that begins, “Well it’s not so much legs as brain.” then going on to explain the risk factors of being born prematurely and the effects of multiple respiratory arrests on the infant brain.

Many people think the past 20 years has been a watershed in terms of social attitudes and this is true in many ways. However, I am still surprised how people constantly assume that you want to discuss every aspect of your life in mind numbing and yes startlingly intimate detail. On the positive side this does mean that at least people think there is a possibility of my having a significant other, and this is progress in itself.

The sociocultural distance travelled was pointed out to me a few years ago in a rather unexpected and amusing incident. There is a small corner shop on the high street, near the flats where I used to live, the sort of place you could pop to when you were running short on milk. Most of the buildings locally were erected well over a century ago and as a result they were not especially wheelchair friendly. The shop in question had three steps up to the front door which made for an interesting retail experience. When shopping here I would have to stop my chair, bang on the window, or grab a fellow shopper on their way inside to get the assistant’s attention. The shop assistant would then come to the door, I would shout up my order, they would fetch the items and bring them down to me, I would pay, they would go back in then return with my change and a receipt.

One hot Sunday in July I was sitting in my flat’s communal garden with a friend, we both wanted an ice-cream and I decided to throw caution to the wind and go and get them along with a packet of Hobnobs as my parents were visiting later in the afternoon. I set off to the local shop to get them. I got to the shop and went through the usual routine of banging on the window, the elderly male assistant stood at the top of the steps and I called up the order. All was going as usual as I sat texting friends whilst waiting for the old man’s return. He came back after a few minutes with two Magnums wrapped in newspaper to slow their melting, he placed them silently in my lap along with a packet of ……… condoms!I sat staring at them, featherlite and ribbed for her extra pleasure, then looked up at him; he stood quietly unable to meet my eyes. I handed a £10 note over, he dashed up the steps and came out in a flash with change and a receipt and I wheeled myself hurriedly away. I imagine he thought I was in for a very interesting afternoon, that didn’t involve dunking things in tea!