Tag Archives: funny

Only When I Laugh

A few weeks ago I was reading The Times Newspaper’s ‘Spinal Column’, a regular feature written by the columnist Melanie Reid who became quadriplegic a few years ago following a horse riding accident. Her column has provided a much needed window into the disability experience. It is raw at times; written in the moment. Melanie shares with we readers the ups, downs, farcity and at times utter hilarity of life with disability.

I was surprised and saddened when she related that some readers thought she was making light of the problems people with disabilities face. Personally I have always been a great believer in the power of laughter. The ability to laugh at myself has been a saving grace in the last ten years, it has helped me to deal with unimaginable loss. It has saved me from becoming a moaner, I can discuss my problems and not feel weighed down by them. People think I am eccentric when, for example, I say that I have become convinced that my garden shed has a contract out on my life as bits of its construction seem to keep wedging themselves under my wheels at the most inconvenient times.

For me, humour is a way of deflecting my mind from my personal vulnerability, the precarious nature of the limited independence I have. The last few months have given me precious little to laugh about apart from 2 things: our family have now developed a communal sock fund; men see wardrobes very differently to women.

First the communal sock fund, because I have very swollen feet I have to wear men’s size 8 to 10 socks. This is, coincidentally, the same size worn by my dad. He has now taken over laundry duty with the result that recently we discovered we were in fact wearing each other’s socks, as they had somehow got swapped in the process of him doing the laundry at his house and returning it to me.

Secondly, men and wardrobes. My dad has developed a hatred for plastic coat hangers, as he says there are too many of them in my wardrobe and they take up too much space. He also struggles to tell the difference between nighties and dresses, pyjamas and leggings. This makes it really interesting when I come to get dressed each morning and reach into my wardrobe. He did help me the other day when I tried 3 times to fasten a shirt up, got frustrated as I was always left with a button at the bottom and he explained that it was the spare button.

If we both stopped to think about why these things were actually happening we would probably end up in the deepest of depression. However, the ability to laugh in the face of adversity has, to this point, saved us from that.

This week I came across a quote by Robert Kennedy that summed up how I feel about dealing with sadness and adversity, “Tragedy is a tool for the living to gain wisdom, not a guide by which to live.”

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.

 

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.

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’).

Customer service

I woke up this morning and decided that it was time to come out of hibernation; a state that I have been in for the last few weeks, brought about by Christmas indulgence. Turkey, chocolate and those good old fashioned roast chestnuts have combined to work their spell. I can feel my jeans taking the strain. Inactivity has caught up with me.

I have reached this conclusion after spending the last half an hour trying to convince myself that the jeans I have on were just tight from the wash. I have to concede defeat and admit that, yes, I have definitely expanded!

Christmas is probably the only time of year when I have a prolonged period of complete inactivity – mostly because, in connecting with family and friends, it is inevitable that I spend more time than normal indoors.

It seems to come as a shock to the general population that, as a wheelchair user, I might sometimes be anything other than inactive.

Last year I was in a hospital waiting room and the person next to me asked how I stayed so thin in a wheelchair? I didn’t know whether to be shocked or flattered by this question, I hate the fact that people assume I am inactive. It takes me twice as long to do a basic food shop because I frequently have to stop what I am doing and trek half way round the store to find someone to reach something from a shelf. At the end of this mini marathon, I am invariably seen hanging shopping bags strategically on the back of my chair. In my case three bags are the limit; any more than this and the chair will tip backwards. The result of this is, trust me, not very graceful and in my case was a painful reminder of just why the NHS wheelchair service advises not to put heavy things on the back of your wheelchair.

Over the years I have devised my own methods for carrying those difficult-to carry items that are the impractical to attach to a wheelchair. I can carry bags round my neck, leaving my hands free to propel myself.

My consultant has conjectured that these antics help explain recurring pain, stiffness, and postural problems I am experiencing of late. I have pointed out that I have tried to evolve another pair of hands – but somehow, I don’t think I have the spare time to devote to the process. At college, when I still walked with crutches, I carried folders in my mouth. Sometimes people would walk past me, stick out their hands and yell “Drop!”.

I had to give up this method some years ago to preserve expensive dental work.

I have, of late, experimented with carrying two bunches of carnations between my chin and my chest – which was fine until passers-by stopped and asked if I was ok? Having to respond resulted in losing the tenuous grip I had on my shopping.

In December, I considered designing a sign to wear about my person saying, “Please don’t talk to me, I’m coping”; thereby allaying the fears of the well-meaning, helpful masses who are fully charged with a measure or two of Christmas spirit.

Those good-old “independence skills” I had drilled into me, more than half a lifetime ago, just will not release their tentacle like grip on my psyche. I find myself almost magnetically drawn to “have a go”.

Twenty years of inclusion legislation has supposedly produced an atmosphere that fosters awareness of disability and barriers to participation.

Some weeks ago, I entered an article I had written in a competition. We only filled out the necessary basic information on the forms in my dyslexia support session. Support time was running low and the entry deadline was on the horizon. I was required to make the entry fee payment by BACS, something I had never done before.

I sat in the reception area of the Dyslexia centre and, as I looked at the form, my stubbornness reared its ugly head. Well, it was that or the constant talk of austerity and cuts to services which rekindled my maverick streak.

Cerebral palsy, visual processing problems and visual tracking difficulties were not going to get the better of me. Support worker?; who needs one of those? How hard could this be anyway?

I scanned the form and found a note, “If you have any queries call us on ….”.

When I did so, I was greeted by a very brusque voice. I explained that I wanted the details of where to send the BACS transfer to and the voice continued in a rather exasperated tone, “The email address is on the form” (it was in light grey italics, on white and I had missed it). She then asked if I still wanted the email address and continued by saying, “Send the email “care of the secretary. Everyone can spell secretary can’t they?”

I didn’t have time to argue with her by saying, “Well, in the room I am calling from, the odds are probably stacked against it”.

Am I alone in being depressed that the general public, even ostensibly professional and well-educated ones, even with almost two decades of inclusion built into social policy and even with the modern emphasis on disability awareness, appear to resolutely refuse to truly understand the issues faced by those with disabilities?

Only when this changes will such problems be properly addressed at a grass roots level.

The Big Red Button

The last ten to twenty years have seen an increasing reliance on technology within daily life; today most people will have a mobile phone, personal computer or digital music player. Trips to the library and the supermarket are now increasingly dominated by technological encounters, self-checkouts seem to be conspicuously replacing human contact and last year I even came across an article about the idea of a machine that replaced the family doctor, a step too far in my opinion. I only have to look at some of the errors made by my voice recognition software to see the possible pitfalls of this idea, it frequently offers up bizarre approximations of what it thinks I have said leaving me to wonder about booking it a session with a psychoanalyst.

Disabled people are often the guinea pigs for, and recipients of, technological innovation such as alarms to summon help or remote communication devices to keep us safe. These are intended to be cost effective to allow for an increasingly strapped public purse and many are now an established part of the social landscape. In reality I have found that technological reliance produces some interesting and sometimes funny results.

Many people unfamiliar with disability assume that we disabled people live in specially adapted environments away from the problems and stresses of general life, that we are monitored and kept safe from harm. I started my adult life in one such sheltered environment, a block of flats purpose built for us wheelies. The place had an alarm system, in the form of a red button on a string around my neck that I could press for summoning help should I fall or become unwell. An alarm would sound after pressing the button and a microphone in a box next to my bed would allow me to talk to someone to arrange assistance.

I had lived in the flat for some years and never had to use the alarm for anything. To be honest, I always found that keeping a mobile phone with me worked just as well. However, early one Wednesday morning I was catapulted from sleep by a very loud noise. In my drowsy state I pressed the button on my alarm clock, but the noise was still there! I opened my eyes, squinted at the clock and realised it was only 5am. As my mental capacity, was somewhat fogged by interrupted sleep, it was a few minutes before it dawned on me that I had no mains power at all, and that the noise was the back-up panic-alarm battery kicking in. Did we have a power cut on the complex? I took stock of the situation. I was in the pitch black, lying in a bed that required electricity to raise me up and allow me to get out of it. Was this one of those emergency situations the button round my neck was meant for? I decided it probably was.

“Hello Miss Baddeley. Can we help you?”

I explained the situation to the disembodied voice on the other end of the intercom system. The response came, ” Have you paid your bill, or put enough money in the meter?” I explained that I have a quarterly bill, no meter and that I thought it was only a trip switch that had been activated, not a complete loss of supply.

The operator seemed not to grasp my situation, so I changed tactics and asked if someone would be able to come out to me? They said they were only able to give me a phone number, that I would have to reset the power myself and work out which of my appliances was causing the problem. At this point I was losing the will to live. I, like a lot of people, had assumed that the operators at the call centre would have been aware of my disability and situation, as every six months or so I had filled in their form, but it seemed that this not the case. I told the operator it was sorted, gave up and phoned the fourth emergency service, otherwise known as “Dad”.

I was left wondering what the point of the alert system actually was? If the idea is to safeguard people, don’t get me wrong, I don’t expect anything resembling the Milk Tray advert, with a bloke parachuting out of the sky, or another similarly exotic entrance, but I was expecting some useful suggestions for the situation I was in. This was a service I was paying to have access to. As it was I was left literally blundering about in the dark.




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!