Tag Archives: assistance

From The Sublime to the Ridiculous

From the Sublime to the Ridiculous

This blog post is brought to you courtesy of 2 iPads, an iPhone and 2 add-on keyboards.

Well, where do I start? Possibly with my so called support worker blaspheming about the 2nd keyboard I’ve dug out of my bag this morning. Yes, that’s right folks I have 2 of them! My trusty iPad 2 3G state of the art about 4.5 years ago, recently joined by the iPad Mini, (mostly because it has Siri, Apple’s voice recognition software that is built into the iPad’s operating system) aimed to reduce my reliance on fellow human beings. This is all very well in theory, until you find yourself in a technological void and the batteries have gone in the 1st of your ‘qwerty’ keyboards. Such is my life. Parts of each appliance works, but no singular tool will complete a task for me.

This situation prompted several memories of similar technological faux pas. Some months ago I attended the British Sociological Association’s (BSA) annual conference in the lovely surroundings of Glasgow Caledonian University. This involved a mammoth train journey, the usual pre-booking of assistance a week in advance and the finding of an accessible hotel room, all of which was going swimmingly until I found my way to the taxi rank. A very pleasant man asked if I could get out of my chair and into his taxi, to which I responded, “No, I need the ramp.” It is worth pointing out here that there was a beautiful fleet of white hackney carriages, relative bliss compared to where I live. The man dutifully got out with a perplexed look on his face brandishing a large key to open up the floor to unfold the ramp. He had never done this before and I was developing a sense of impending doom as he couldn’t do it now.

The ramp made an unhealthy, creaking noise sounding rather like a badly worn, octogenarian hip joint. The result had a definite contracture in the middle of it that should not have been there. The whole car looked as supple as me on a good day. He was able to manhandle me up this undulating ramp into the back of his vehicle, then came the need to fold the ramp back up into the floor. Well that just was not happening. I suggested he wedged of the 3 sections against my wheel, so he could shut his door and take me to my destination. Having got in there, I was not about to give up.

We did this and I arrived at my hotel in 1 piece. He unloaded me in the same, ungainly manner and I left him to the problem of folding his ramp back up into 3 and into the floor. I was sitting in the hotel reception, when I heard banging followed by a string of expletives. Rather embarrassed, I said to the receptionist and queue at large, “Terribly sorry, I seem to have broken his car.”

However, this was all nothing compared to what I had to do to get into my support worker’s grass-green, 3 door, Vauxhall Corsa. To embark on a journey in this vehicle I would stand, bodily hanging over the passenger door whilst my colleague folded my chair and slotted it behind the seats, I would then sit in the seat, bring my knees up to my chest, while my support worker lifted my feet into the car (sometimes having to force the issue a little). Once the seatbelt was on, I was comfortably situated with my knees rammed against the dashboard and my nose practically on the windscreen. On reaching our destination, the above description was applied in reverse. This was done on a weekly basis for around 4 years; ‘needs must when the devil drives’ and drive me he did! In fact, I think this qualified as suffering for one’s art.

I got into my university library this week in the most unique manner possible. There is something about universities where, at the end of term, they become building sites. At least ours does anyway. Every year around this time I begin to get a feeling of dread; my well-practiced routines will inevitably be disrupted by this maintenance work. This time my usual place of study is being renovated to become a teaching area, gone are the comfy sofas, coffee lounge and TV with rolling news. For years my only access to the news as it happened was in this coffee lounge. I have had to find a new haunt.

There are tables and a reading area in the library itself, no cups of tea and cake, but you can’t have everything. Disaster struck this week when I arrived to find a group of workmen busily digging up the tarmac and roping off my usual entrance with tape. Ever intrepid I found the side door and made my way to the lift that allows you to access the main counter; I found it, presenting in the 1st floor position i.e. above my head, with the buttons flashing different coloured lights. I have to say, more in hope than expectation, I depressed the button that should make the lift descend, no response. I prodded a few other buttons just for good measure, then asked a passing member of staff what to do. “Does it have a plug you can turn on and off?” I asked, thinking of the many times my digital TV box had done a similar thing. We found a switch, but nothing seemed to change except perhaps the noise it was making became subtlely different. Ever helpful n the face of my adversity, a staff member went to ring the maintenance department, apparently to turn it on and off required a special key. I sloped off for a cup of tea while he and the key were found and put to use.

Anyway as I said at the beginning, this post may have taken 5 appliances to produce along with a good old dollop of ingenuity, but we got there in the end. What can I say? The world loves a trier. We just have to make this thing go live now, see you in a day or two.

Adversity, Misconception and Disability Chic

A few weeks ago I ventured out to my local cinema to watch ‘The Theory of Everything’. This was the amazing film about the life of professor Stephen Hawking, the world renowned physicist and cosmologist. As well as his intellect he is perhaps, the most well known sufferer of Motor Neurone Disease. He was originally given a life expectancy of two years, however he defied the odds and has survived many decades longer than predicted, making major discoveries and contributions to the word of science and to the layman’s understanding of it.

Growing up when I did role models with disabilities were thin on the ground, the few there were only had connections to sport. I did my fair share of physical activity as a child I swam and was a keen rider having regular sessions with the Riding for the Disabled Association via my school and private lessons at home. It was only recently when researching an academic project that I discovered horse-back therapy, or hippotherapy, is a clinically recognised therapeutic intervention. The name has Greek roots, ‘hippo’ meaning ‘horse’ and ‘therapy’ meaning to ‘treat medically’. My support worker and I had thought it was a spelling error! This therapy has been shown to promote physical development, speech and confidence in individuals with disabilities.

Looking back, I don’t think I aspired to be successful on horseback in any kind of conventional, competitive sense. For for me it was an odd kind of escapism, these activities assumed an almost hedonistic quality. The hours swimming and riding were like a window on another life. I loved that I didn’t look “disabled” when I did them. Just as today I sometimes lie on my bed in an outfit to get an idea of what I would look like standing up and enjoy the appearance of my washboard stomach, only to have it disappear (somewhat depressingly) when I sit up again.

I saw wheelchair sports as negative. I had been raised to believe the wheelchair had too many connotations of ‘laziness’ and ‘giving up’, for it to become part of a leisure activity or a positive tool to allow me to achieve. Society has certainly come a long way in the last 20 years or so, at least I thought it had until I picked up a newspaper and read the story of 12 year old Joe France who was denied entry to the Hawking film because it wasn’t being shown on any of the screens he could access. Ironically, this incident coincided with Disabled Access Day.

It saddens me greatly that situations like this are still impacting on the lives of individuals, a generation after legal measures aimed to make such experiences a thing of the past. This is also following a period in which Motor Neurone Disease has seen a massive increase in public awareness as a result of the ice bucket challenge. For the uninitiated this was a charitable craze that went positively viral, it involved individuals pouring buckets of ice water over themselves with the aim of raising money for Motor Neurone Disease. Participating individuals filmed this activity posting their endeavours on social networking sites such as Facebook and YouTube.

An article in ‘Society Now’ describes the craze as narcissism dressed up as altruism, and questions the motives of those taking part and the effect of these crazes on societal giving. They point out that when one cause is in vogue others lose out by default, not just in the financial sense but in the social sense as some causes cannot hope to capture the public’s imagination. Dyslexia is one, as is the needs of adults with Cerebral Palsy; we are not cuddly, sweet or life-limited. We struggle on with all the appeal of an elderly dog in a shelter waiting and hoping for someone to notice we are there.

For me the solution is to adopt the US attitude towards disability, to celebrate it and support the individual more. We are not all in the position of Stephen Hawking with supportive parents, wife and close friends; neither do we all have his intellect. Most of us are average people whose ambition is to go through life with a family, work and leisure activities. For this to be achieved the basics need to be in place…. accessible public transport, flexible working hours and a flexible benefits system that does not penalise for trying to gain paid work. Here’s to progress.

Meaning and Metaphor: Dispatches from the Front Line of an Illness and Disability

I have to confess to being somewhat neglectful in my blog posting of late. The truth of the matter is that having a close family member with cancer for a while became all consuming, our family has had its normal rhythm disrupted. Several weeks ago I came across an article in The Times about the different metaphors we use to describe illness. These it seemed were most often to do with war. I think for the individual affected by serious illness the war metaphors can become both descriptive and prescriptive, many people have described my mum as tough and a fighter. Both are true of her and in many ways appropriate as she attacks life in general with a type of military precision I have found nowhere else in civilian life. I believe it was Christopher Hitchens objected to this type of description, he felt that cancer was attacking him, not that he was battling the disease. I suppose having a positive mental attitude can improve your quality of life, but I am not sure how much impact it has on the progression of the disease.

Spending a lifetime living in this order and routine I now feel adrift, when cancer a strongly disruptive force unexpectedly landed in my wider family life. The strangest thing was that many things carried on as normal. Cancer is a word that makes you stop and take an involuntary deep breath, the surprise comes when you breath out and and find that all other aspects of life are the same, life it seems still happens. The paperwork generated by my disability, normally so deftly filed by my mother has piled up meaning that my once ascetically pleasing work top has all but become engulfed. For several weeks I felt like I was camping out in my own life, just as when you are on holiday, you get to the hotel, live out of suitcases and experience and do things you would not normally do, so to with the wider family experience of illness.

My life has been ordered and routinised by virtue of the assistance I require in order to live. Every day of my life has its own structure, different activity and mini plan. Cancer has disrupted things on every level. So used to being the subject of medical intervention myself it felt like an odd kind of out of body experience to watch it from another perspective. People are always telling me how much I sound like my mum, now I catch myself thinking she sounds like me. She uses medical lingo like a pro and would rival some of my friends from my special school days, comfortably using terms like PIC line and spiking a temperature. For all my adult life my mum has served me well as a clothing mannequin, while shopping she would try outfits against her body to see if the trousers would be too short as we are the same height. I never thought this role would reverse in the form of the loan of my spare wheelchair and pressure relief cushion, the latter becoming necessary because of a serious reduction in body mass.

We have a deeper and in some way better understanding of each other, perhaps that can only come via a shared experience. I have learned to be less idealistic and judgmental of those who make choices for loved ones based on the information given at the time, and we both know well that medicine can be both miraculous and cruel, tearing to the depths of ones soul on both counts.

Recently I was struck by media reaction to statistics that indicated that over 50 percent of woman and 43 percent of man took a drug that was prescribed to them, most “popular” were pain killers, cholesterol medication and antidepressants. The inference being that we could do without these if we just shaped up and pulled ourselves together. It saddens me greatly that even in the 21st Century it can be inferred that to experience mental ill-heath is a negative lifestyle choice that should be discouraged. Yes such drugs are costly, but like treatments for cancer and heart disease they save many lives and improve the quality of those lives.

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!