Monthly Archives

April 2016

Let Kids Be Kids (and other random thoughts from an bland week)

By | Disability, Lifestyle | No Comments

Holly Williams

 

I have been a bit stumped this week as to what to write my blog about. As usual, I’ve been trawling Twitter and other news sites for disability related stories to comment upon but quite frankly all that I could find was article after article about how our beloved Government are delivering more and more cuts to disability provision.  While I continue to believe this is terrible, I really do not know what else to say about the situation that I haven’t stated before in other blogs. To be honest, sometimes I get a little fed up with writing about disability issues all the time. I wouldn’t mind so much if now and again I could come across something that raised a different aspect or point of view but it just seems to be a constant barrage of information about how David Cameron and his cronies are putting the squeeze on us. It wouldn’t have to be a positive story even, I would settle for one where some other section of society apart from the Government and Capita were having a pop at us. At least it would give me someone different to slag off. So I am going to apologise in advance if this week’s piece is a bit rough and scrappy as I haven’t really felt that inspired by anything that I’ve read.

Only one story did pique my attention this week. It appeared in the Daily Mail yesterday and told of  mother, Emma Symonds who is allowing her five-year-old son Logan to where girls’ clothes to school because the child identifies as a female. While I can see this as progressive in some ways and am all for the rights of transgendered people I do question whether a child as young as five can really make decisions on something as big as what sex they want to be. There seems to be a fashion these days where more and more parents are identifying their children as transgendered just because they claim they want to be a ‘boy’ or a ‘girl’. While I am sure there are many among these ‘mermaid’ children as they are known who will grow up truly believing they were born in the wrong body, I do fear that some parents will be anxious to use this as an explanation as to why their little ones don’t conform to the expected behaviour and dress of their sex.

There have always been boys who like playing with dolls and dressing up and girls who have been more interested in sports and cars. Now we are a lot more accepting of this which is a admirable thing, everyone should be able to express themselves how they wish. I just wonder whether those children who express such a preference will be too quickly catagorised as trans and therefore be given a label that they might not identify with as they grow. If you put a little girl in trousers, no-one makes a comment, but a little boy wanting to wear a dress is somehow an issue. The Daily Mail runs the piece beneath the headline ‘The twin brother who’s being brought up as a sister’ but that is simply not the case. Miss Symonds states that she’s simply allowing her son to dress in a way that makes him feel comfortable and happy, she still uses the terms ‘he’ and son and says she will happily seek further advise when he is old. Yet the Daily Mail already has decided that wearing feminine clothes must make him a girl or what to be one. But this may not necessarily be the case. Individuals like Eddie Izzard have proved that the type of clothing you choose to wear doesn’t necessarily define your gender or sexuality. Perhaps I have a peculiar view on life but I’ve never really understood why people put such an onus on gender and what is appropriate for what sex anyway. Personally I think there is enough pressure on kids without adults trying to define their sexual orientation at such an early age. Anyway, I find it hard to believe that a child of four has the mental capacity to know exactly what they want to be for the rest of their lives. When I was four, I hadn’t learnt to walk yet and spent my times crawling so decided that I was going to put my Dad’s slippers on my hands and live as a dog! Which reminds me that nearly every photo we have of my Dad up till the age of eight shows him at some fete or party wearing a dress. Admittedly , it wasn’t his choice (he claims)  and the occasions did require fancy dress but it just proves that what you are like as a kid might not be a permanent thing. Thankfully I have never seen Dad revert to childhood and hope I never do. I’m not unsupportive, he just has terribly, skinny legs!

Like I say, this week I haven’t really found fodder for my blog this week, hence the strange diversion into cross-dressing. A small item did niggle at my disability radar.  Cadbury’s have changed the wrappers of their Roses’ chocolates from the traditional twisty kind to the new fangled sealed variety. They claim it’s to stop contamination but for me, and I am sure a lot of other people who have difficulties using their hands, it has made it a lot more tricky to enjoy a choccie treat. I find it a piece of cake, well a bit of chocolate to just grab the ends of the old wrappers between my fingertips or teeth and pull but the new design takes a lot more skill and is bound to end up with a smushed Golden Barrel or Strawberry Dream all over my hands. I know it doesn’t sound like a big deal and it’s not. It’s just one little piece of independence that I have lost. It felt the same when the did it with the Caramel bars. Also I can’t help feeling they are overplaying the safety aspect of thee whole matter a bit as Roses come in a sealed box or tin and are usually shared by friends or family.

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The big news this week has, of coarse, been the 90th birthday of the Queen. I’m pretty indifferent to the monarchy myself. My mum would quite happily roll out the guillotine on the lot of them but I think the old girl hasn’t done a bad job as head of state considering her kids and grandkids have been a bit of a nightmare. I did feel a bit sorry for her this week however. I know it’s had to know what to get a 90 monarch on their special day but some of the celebrations have been a bit, well, odd. First she has her official photo takien halfway up the steps of Windsor Castle which looked like the photographer just wanted to prove she could still get upstairs unaided (talk about rubbing itin that you’re getting on). Next the winner of Bake Off presents her with a wonky purple cake that seemed to have nothing to do with Britain, the Queen or turning 90. Then some elderly bloke up the road in Windsor decides to celebrate his love of the royal family by putting this in his front garden. Scary!

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Prince Phillip’s eyes have seen horrors mortal men can only imagine

According to the Telegraph, 83-year-old Ben Bennet even believes Her Maj has dropped by to see his creations herself because he has seen a number of Range Rovers driving by his house. I have news for Mr. Bennet, I don’t think that’s the good lady herself but it might very well be her security team. I don’t have blue blood but it’s my birthday next week and if any of my neighbours start to erect terracotta effigies of me with privet plaits, I’m moving!

Bed Side Manners or Just Common Sense

By | Disability, Lifestyle | One Comment

Raya Al-Jadir

 

I have heard from disabled friends and acquaintances some quite alarming stories about their various encounters with medical professions and although I empathised greatly with them I can’t claim to have fully understood it.

Their stories ranged from a doctor telling a wheelchair user ‘please take a seat’ to a more serious comment by a specialist doctor to a friend of mine that her illness is in fact in her head and it is likely to stem from depression brought by the disability! Dismissing completely that medical results do show irregularity in my friend’s health. Disability is a problematic concept for most people but it seems to be more so for medical professions as they react to disabled patients in two classic ways; either attributing any symptoms/pain to the actual disability or the complete opposite as they dismiss the disability and treat the patient without considering the implication of the condition.

Over the years I have had my fair share of ‘awkward’ moments with doctors but I always overlooked them as I assumed they don’t deal with many disabled people or I put it as a simple mistake that anyone can make. Yet I often struggled with doctors who referred to my disability condition as a ‘disease’, it used to hurt and irritate me because what I have is not an illness; it is not contagious and certainly can’t be cured. It is just a condition that I was born with just like there are people who are born blond or tall or of a certain shape. Again I never complained or brought the attention of the doctor to his wrong choice of words.

My attitude changed completely last month when I finally decided to take action after experiencing two incidents in a space of 5 days at my GP practice. I have been a patient at this practice since I was a child so I was very well known there, so when I got ill with a bad cough I phoned the practice and spoke to the on call doctor. Explaining that I am a ventilator user, have respiratory failure and heart murmur plus my actual disability I asked him for a home visit as both my heart and chest are hurting, I also emphasised that I hardly ever ask for a home visit and would usually come out regardless of the pain I am in or the weather we are experiencing but in this instance I am very weak and need to be checked. To my great shock he refused claiming that they listened to my chest four days ago and it was clear and that I should just carry on with the medication. I was left speechless and had no idea what to do, all I knew was I am feeling not only ill but very vulnerable too.

I thought about calling an ambulance but I was not sick enough to be admitted into hospital plus the mere thought of sitting in casualty for hours to be examined by a doctor that had no clue of your medical history or disability filled me with fear as memories came flooding back when 9 years ago hospital stuff made a mistake by giving me too much Oxygen causing my respiratory system to collapse and become reliant/addicted to my ventilator 24/7. Eventually I called my physiotherapist who came to see me and listened to my chest, which made me feel safe again.

After few days I developed another infection and again phoned the GP practice and this time a different doctor challenged my weight. As she informed me that she will prescribe a certain medicine I advised her that I take a child dose due to my weight, she did not respond so I reiterated that my weight is 26 KG, the doctor replied ‘is that your age’ I said no my weight to which she claimed ‘it is impossible’! I was somewhat lost I did not know how to convince her that this is my actual weight, so I politely insisted that this is my actual weight but again she dismissed me and said you can’t be. I thought the best thing is to inform her that I am disabled so I told her I have Muscular Dystrophy to which there was a complete silence, I figured out she had no idea what MD is and just repeated I am disabled, finally she seemed convinced as she exclaimed ‘oh you are tiny’!

I am not sure what angered me more that fact that the doctor did not check my medical record before calling me or the fact that she did not believe me when I told her how much I weight. It is then that I decided to complain about both encounters not because I want these individuals punished but so that they learn from their mistakes and learn some basic disability awareness training to prevent others from undergoing similar experience to me.

C4 rips the lid off PIP

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Holly Williams

 

Ade Adepitan

There was a fascinating and distinctly disturbing episode of Channel 4’s current affairs programme Dispatches on Monday. It took an in depth and revealing look at the assessment process for the Governments controversial PIP disability benefit, to see what is the attitude of the company Capita who carries out the assessments and those it employs to the claimants going through the process. What was revealed in the film was hardly flattering but I doubt that anyone who had had to undertake one of these stressful and brutal reviews would be surprised by the callous and unfeeling mindset in which they are carried out. The film wiped away any facade that the Government’s policy towards the disabled is about improving lives or offering the correct payments to the people who deserve it and shows it for what it really is, a cold-hearted exercise in taking money from those who really need it. Last month, Work and Pensions Minister Ian Duncan Smith resigned over further benefit cuts in this year’s budget but this programme showed that even without additional pressure, the whole process seems to be designed to punish disabled people for asking for the help they deserve.

I am fortunate enough to yet endure the dreadful process and after watching this report, I fear it even more. The company in charge of carrying out the checks Captia, advertises for ‘caring’ assessors with a background in working with disabled people but it soon becomes apparent that this is just to give the appearance that they care about individuals welfare. Dispatches sent someone tailor made for the job, psychiatric nurse Noel,  undercover to discover what the company really wanted their employees to do and he soon found out that Captia unsurprisingly cared more about money than people. While they appear to appeal for people with special skills, such as Noel, the training was quick to emphasise that these interviews were anything but in depth and any ability to look too closely at individuals actual needs was actively discouraged. Time meant money for Captia and its employer the DWP and each interview could last no more that 45 minutes. It is grimly laughable to think anyone could believe that a person could accurately assess someone’s full physical and mental health needs in this short window. The best you can expect is a brief outline but it is clear that’s all that is wanted. A fleeting glance at the prospective scrounger to see what they appear to be able to do at that moment and then base the assessment on that. But as any person with a severe medical condition will tell you, what is seen at first appearance is only a small part of the story. This is especially the case for people with long-term mental health problems such as depression, anxiety or eating disorders. Yet the questionnaire only asked how the person seemed within the interview. Speaking as someone who suffers with conditions such as these I can say, it is possible to seem okay or even be okay for weeks, months at a time but that doesn’t mean that the problem isn’t there and perhaps is kept in check by therapy paid for by benefits, therapy that person couldn’t function without. People like James, the young man interviewed by Dispatches, who struggles with Bulimia yet was deemed capable of cooking and feeding himself because he had no physical difficulties. His PIPs assessment didn’t take into consideration his stress and discomfort around food and the support he required to maintain a healthy diet.

No, the attitude of the training at Capita seemed to be if you can’t see it, it doesn’t exist and if the person says it does they’re probably lying. Applicants are encouraged to view the people they are interviewing through a cynical filter and write their report based on that. Of course that’s a good thing, for Capita, because the glancing, vague opinion of someone who has been deliberately instructed not to pry too in-depth into someone’s condition will, of course, provide a report of an individual that needs a lot less financial help than one that has actually listened to what life is like for the person with the disability. The system is shown to have a conveyer belt, sausage factory ethic, operating to get through the assessments as quickly and efficiently as possible with little to no regard for how the outcome will ultimately effect the person’s life. People working for Capita are actively rewarded for the amount of reviews they do, with pay and bonuses linked to the number of reports turned in. Surely such a framework is bound to encourage a mentality of quantity over quality even in the most well-intentioned employee? And it’s going to be the people who have had to go  through the process and endure slashes to their benefits that will be the ones that will suffer. But at that point Capita and the DWP will no longer care because their job will have already have been done.

But here’s the real punchline. I don’t think that all this great endeavour to get people on PIPs and therefore lower the benefits bill will actually save the Government any money at all in the long run. Because not only are they having to outlay the funds to run the scheme to get the whole of Britain’s disabled community onto PIPs but the drop in income for many people will mean that they will be unable to pay for the treatment to help them maintain their mental and physical health. Whether they are using their current payments to pay for mobility aids, therapy or personal assistance, if they are unable to do so they will end up being in a more dire and less independent state than before and therefore need to lean harder on the already overstretched  NHS. Many employed disabled people are able to work because they use their benefits to pay for additional assistance regarding travel and care that their wages wouldn’t cover. It gives them the necessary boost to be on the same footing as their able bodied peers and become part of the workforce, an idea that the Conservative party claims its behind. Looking to make savings in the national budget by cutting disability benefit is like heating your house by setting your floors on fire. It solves the problem temporarily and will end you in a worst state than before.

It is beginning to feel like Britain is hitting tipping point in regards to the way the Government has turned disabled people into scape goats for the economy. It just isn’t working anymore and very soon, if they keep leaning on us it won’t just be disabled people that suffer.

Motability? If only…

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Sallie Humphreys

When I turned 17 I naively assumed that learning to drive would be the same experience for me as it was for all of my school friends – an opportunity to have some long-sought-after freedom! However, I’m disabled so, of course, things are never quite as straightforward as they are for able-bodied people, but I was up for the challenge.

Sally Humphreys

The first stage was attending a driving assessment. The day was kind of liberating as I got to play around in a car for the first time, and it felt like an assault course as I carefully steered the vehicle between traffic cones. However, the fun and games ended when the assessors informed me that I would have to learn to drive in a specially adapted automatic car, which would enable me to drive with just one arm. Following this, I didn’t even consider beginning driving lessons until I had finished sixth form and started my Art Foundation course. My mum and I found out about a BSM driving instructor called Mary, she had an automatic car with tons of different adaptations, and booked me in for some lessons. Mary, along with the driving assessors, decided that I would require a steering ball, a quick release handbrake and also a tiny adaptation that enabled me to use the wipers with my left hand (leaving my big arm to the steering duties).

I don’t think I ever anticipated just how painful the lessons would be. For me, driving with one arm, coupled with the muscular imbalance in my back, somehow forced me to sit heavily on one hip, causing excruciating after effects. Following each lesson, I’d stagger back up my driveway into the house, pop an opium-based painkiller and collapse on the sofa, waiting for the drug to start working. Of course this wasn’t an ideal scenario – particularly because the painkillers I was taking caused me to feel mega emotional and needy, they stopped the pain though so that’s one bonus.

Anyway, I carried on with my lessons and they were fine (except for almost colliding with a bus on a mini roundabout) and then it all went a bit haywire. I’d always felt dizzy during my lessons, but I just didn’t think anything of it – I don’t go a day without having some kind of new pain or weird symptom, so I ignored it. However, I was almost ready to take my driving test when I was diagnosed with having Atrial Flutter (basically, an incredibly fast heart rate 24/7), but I was still determined to pass before starting at Loughborough University a couple of months later. My driving test was booked for the summer 2009, and I felt ready – more than ready, I’d been learning for almost a year! But then, during a weekend away in London my handbag was stolen, containing my provisional driving license, a few days before my test. Seriously! Someone or something was conspiring against me!

To cut a long story short, my test had to be cancelled. I had my heart surgery a few weeks later and then went off to university shortly after that (looking back, god knows how I did it!) My driving test was then rebooked for a few months later but due to adverse weather (bloody snow) it was cancelled again! Third time lucky, my final test was coincidentally arranged for a week or two before I was scheduled in for another heart operation. Luckily, I passed – first time! Best.feeling.ever.

Yeah, not all stories end with a happily ever after.

According to the government, and the DLA (Disability Living Allowance) assessors, I am quite simply not disabled enough to require the mobility component of DLA which would enable me to be in receipt of a Motability car. This seems shocking, right? Who gets told it would be illegal if they drive a manual vehicle without adaptations, as well as needing two heart operations and is heavily reliant on strong painkiller, yet isn’t eligible for a Motability car?

My parents both drove manuals, and were just not willing to swap to an automatic with adaptations – this decision left me so angry for years, especially because I’d seen my sister pass a driving test and instantly have use of either my mum’s car or her own Peugeot. I think this feeling of exclusion left me more angry and depressed than actually not owning a car. These emotions made me analyse my disability even more, and somehow forced me to see myself in a more negative light – because I no longer felt equal with my sister or peers. I couldn’t help thinking that if I’d been born ‘normal’ I wouldn’t be going through this. I know one thing for sure, if I have children with my disability (which is 50% likely) I will do everything possible to prevent them experiencing this same feeling. But, in all fairness, my mum and dad just couldn’t afford to buy me the kind of car that I require.

Whilst at university, everyone reckons you don’t really need a car – except for making hungover trips to McDonalds. However, for me, a disabled student, it would have helped a great deal – carrying shopping basically destroyed my arms, and I really struggled with collecting piles of books from the library that were needed for my essays so I ordered them off the internet instead.  I also had to visit a GP surgery the other side of the town in order to receive warfarin treatment.  Anyway, I coped and got by, but why should I have had to – when exactly does the situation become severe enough that you are granted a Motability car?

After graduating I moved back home and my mum had to become my personal taxi service. I was grateful, don’t get me wrong, but this was coupled with anger, as I felt so frustrated and trapped by my disability. Shortly following this I was assessed for PIP (Personal Independence Payment), which is replacing DLA – and for me, it worked out moderately well. I scored highly on the personal care side of things, but relatively low on the mobility component. So, on the plus side, I found myself having more money for my £40 a week private chiropractic treatment, but I was still no closer to funding my special car.

A few years later, things started to pick up – I don’t know why but by absolute chance I started looking at cars. I’d always dreamt of having a Fiat 500, they are beautiful, and as my Uncle used to be a Fiat employee he gets discount off all new cars, so that has always been in the back on my mind. Anyway, my local Fiat supplier didn’t have any automatic Fiat 500s in stock – he said they rarely do get automatics, especially not cheaper, second hand models! However, they did have a brand new automatic Panda in the showroom, and he invited us along for a test drive.

This whole scenario started off with my dad planning for us to trade in my mum’s manual car for a new automatic, which I, of course, would be able to drive. Naturally, mum wasn’t keen. At all. But for once, I just did not care – test driving that car was one of the best feelings ever – for the first time I felt equal with every other 25 year old, and almost ‘normal’ as I whizzed around the car park. I even found the Panda more suitable for me than a 500, as the unique design of the handbrake meant that I didn’t even require the quick release adaptation.

So, weirdly, after years of anger and fighting, it all went through and we purchased the new car, which would have both my mum and I on the insurance. Needless to say, I loved it and literally felt over the moon, but my mum wasn’t so keen. After years of driving a trusty manual she just couldn’t get used to this automatic, and after a few weeks she chose to buy back her own car. Mum also said she felt it was time I had my own car, even though my dad hadn’t anticipated that my very first car would be brand new!

In order to afford my specially adapted car I was advised to contact local charities, and I am so grateful for the financial help that I received – it really does mean more to me than just being ‘a car’. The freedom is incredible, I can’t do petrol at all without a helper, but that’s okay – it’s a small price to pay! Perhaps some stories do have a happy ever after ending, but it doesn’t mean it’s been an easy ride. For me, I’m still fighting, I currently can’t drive as I’ve seriously injured my right shoulder blade and seeing as I can never really rest my dominant arm, driving is one thing I know I can manage without doing for a few weeks.

Unfortunately, I probably won’t ever be deemed eligible for Motability, but I’m so grateful that I finally have my own version of it.

 

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Trump’s a chump but Thunder’s no blunder

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Holly Williams

 

There has been an interesting meme circulating from disability web site The Mighty this week. It compares Donald Trump’s now notorious mocking of a reporter with C.P with the Ben Stiller Hollywood spoof Tropic Thunder. If you haven’t seen the film I will do my best to explain it in a moment but my best advice before reading this blog is to shut down this window, go to Netflix or Amazon, rent or buy it, sit down with  a bowl of  popcorn and enjoy. It really is one of the most amusing films I’ve seen in the last couple of years. If you can’t be bothered to do that here’s a basic rundown of the plot and why it’s got certain people hot under the collar. It tells the tale of three Hollywood A listers attempting to make a ‘true’ Vietnam blockbuster. The stars of this ill-fated venture include Kirk Lazarus (Robert Downey Jr) an intense ‘method’ actor who has changed the colour of his skin to play an African American soldier and Tugg Speedman (Ben Stiller) a fading action star trying to move into serious acting. A running joke throughout the film is Speedman’s previous attempt at drama, an almighty flop called ‘Simple Jack’ in which he plays a mentally challenged man in the same vein of Forrest Gump.

Many American disabled rights campaigners ask how is the portrayal of people with learning difficulties in this film any different to Trump’s ill-taste joke at the expense of a person with a physical disability and claim there is a double standard. But what these people seem to fail to realise is that the difference between these two incidences are not that they target people with different disabilities but they actually are mocking two groups, one of whom is not disabled at all. Tropic Thunder is not attempting to look at people with learning difficulties in a sneering and amusing way but is satirising the way such people are often used as fodder by studios to tug at heartstrings and grab at awards. There isn’t a character with a learning disability in the film, just a portrayal of a very poorly acted character that is meant to have some kind of mental problem. It is showing how such characters are very often highly inaccurate and just constructed for the purpose of story. The cynicism is crystalized in this exchange between Lazarus and Speedman where the more savvy thespian explains why ‘Simple Jack’ failed to be the hit to launch Speedman as an legitimate star

Kirk Lazarus: Everybody knows you never go full retard.

Tugg Speedman: What do you mean?

Kirk Lazarus: Check it out. Dustin Hoffman, ‘Rain Man,’ look retarded, act retarded, not retarded. Counted toothpicks, cheated cards. Autistic, sho’. Not retarded. You know Tom Hanks, ‘Forrest Gump.’ Slow, yes. Retarded, maybe. Braces on his legs. But he charmed the pants off Nixon and won a ping-pong competition. That ain’t retarded. Peter Sellers, “Being There.” Infantile, yes. Retarded, no. You went full retard, man. Never go full retard. You don’t buy that? Ask Sean Penn, 2001, “I Am Sam.” Remember? Went full retard, went home empty handed…

This exchange demonstrates the way Hollywood looks at people with learning difficulties. Forrest Gump or Raymond Babbitt are no more real or heartfelt imaginings of people with mental problems than the character of Kirk Lazarus, a blonde haired, blue eyed Aussie actor is of the real black soldier he is meant to be playing. The fact that Stiller has the words coming out the mouth of a character who ends the film having a mental breakdown because he has gone so ‘deep’ into his role that he literally can’t remember who he is himself shows how shallow and unrealistic such films are.

Of course, one could argue that the very use of the word ‘retard’ is deeply insulting to those with learning or mental disabilities and indeed it is. But as I wrote in a previous blog, words do not exist out of context. It is the same reason that the 60s sitcom ‘Till Death Do Us Part’ cannot be considered racist. What Alf Garnet says about black people is appalling  but we’re never left in any doubt that he is an ill-educated idiot. Likewise Stiller and Downey’s characters are the punchline of the  movie, spoilt, self-obsessed stars so removed from the real world that they know nothing about those with learning difficulties, or indeed, reality in general. Some people claim that if Stiller had a child with mental problems he would never have made such a joke but if he did maybe the joke would have been even more fitting as it would prove that he knew that such roles are laughably unrealistic.

Which brings us back to Donald Trump. Trump’s actions in response to the disabled reporter’s questions had no such awareness to them. What he intended was to make the man with C.P look the fool but in doing so he simply displayed his own ignorance.  The difference is that Trump is a real person, not a satiric character  and a particularly bigoted one at that. And the real danger is that he is aiming for a position of power. Even after all I’ve said, you still disapprove of Tropic Thunder, at least you can just dismiss  it as not very good entertainment which you cannot do  with Trump.

In A Spot Of Bother With The Kids

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Holly Williams

 

Hello everyone, I’m back. It’s seems like a lifetime since I sat down to write this blog. The reason being, would you believe, is that I have been suffering from chicken pox of all things. At the age of 34, if you can credit it. There was I just getting prepared for the Easter Holidays from my job when all of a sudden, massive great ugly boils start erupting all over my bod,  leaving me totally knackered. Caused an almighty shock for my family as we had to make an emergency, weekend dash to our out of hours doc to get a diagnosis for the mystery illness. A very helpful, if severe Polish medic took one look at my spot-ridden face and said ‘Chicken Pox, get home and stay away from people!’ Which led to the next seven days or so of me being under strict house arrest, barely able to eat and dripping with Calamine lotion. I can’t tell you how ridiculous it feels to be knocked for six by something six-year-olds usually get. Take a look at this photo and you can tell how rank I felt.

 

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When you hear about Chicken Pox, people always refer to the spots and the infuriating itching. But what they fail to mention is the absolute exhaustion that comes along when you catch it as an adult. That’s what literately lays you low. For about a week my days consisted of waking up at the ungodly hour of 11am, getting all dressed up in my best slobby gym wear, breakfast of orange juice, rest for a while, pick at a half a sandwich for lunch before tackling some high impact physical activity such as watching a Adam Sandler DVD, drawing or if I REALLY wanted to push myself, a game of draughts, refuel with dinner before flaking out in front of the TV. I am told that rest is the best medicine, unfortunately I have also been informed I am the world’s worse patient whose brain will not stop working even when a fever starts to boil it like a cabbage! It was only on Tuesday when I began to feel well enough to reengage with humanity again. Since then, my very patient family have been rehabilitating me with trips and meals out. However, it happens to be my bad/good luck that my convalescence coincided with the school hols so while my parents were trying to give me nice relaxing visits to local pubs and gardens we had to contend with hordes of kids running out of control.

This brings me to the real topic of my blog, a subject that was raised by Clare Foges in The Daily Mail on the 9th of March, the bugbear that many of us childless and older individuals.  The seeming tendency of modern parents to believe that the rest of us have got nothing better to do than tolerate the behaviour of their offspring. It seems to be the fashion to believe that just because you have somehow managed to produce a replica of yourself that the world and everyone else in it should just bend down and worship the ground they toddle on. That every place and event should be made to cater for kids and that their bad behaviour is just some form of self expression.

I am at risk of being hypocritical here as growing up, I was what can only be described as a brat. I had tantrums nearly every day and very often in public. Much of my anger was born out of frustration with my disability so I am fully aware that whether big or small there is always a trigger for a screaming fit. But the difference is that when I was losing my rag, my parents always had the good curtesy of removing me from the situation so that my behaviour wouldn’t disturb others. Yes it was hard for them to deal with but they knew that as I was their child, dealing with me was their responsibility.

If one wants to be forgiving, you could suggest that these parents are simply choosing not to give a response to their children’s bad behaviour and by ignoring it teach their kids it doesn’t get them anywhere. Other more damning individuals will say they are just too lazy or incapable to discipline their little darlings. But whatever the reason, good or bad, the inaction of the parents is displaying a very poor message in showing that you should have no concern for other members of society. And that does seem to be the attitude of many of today’s mothers and fathers. That everyone and everywhere should be ‘family friendly’ while they are not ‘society friendly’. Call me old-fashioned but I do believe that there are certain places that should remain child free. Is there really anything wrong with adults such as myself and my parents wanting to enjoy a meal out at a pub or visit a garden without having to put up with the antics of the under tens?

But while all these can be classed as general complaints about unruly children and neglectful parents, what really bothers me is the attitude of some people on public transport. After many years of fighting, we disabled people are now fortunate enough to live in a country where buses and trains have to provide us access by law. Spaces for those of us in wheelchairs are provided and naturally if no-one is using those spaces I don’t have a problem with them being taken up with buggies and pushchairs. But it seems because of this, many parents of small children have come to believe that they have the same rights to these spaces as the people who actually really need them and quite frankly they do not.  Yes, I imagine it is difficult for a mother (or father) with a pushchair to navigate public transport but the truth is a small child can be removed and a buggy can be folded down where as a wheelchair very often cannot. I am baffled and saddened when I read about mothers acting with indignant outrage when politely asked to make way for a person in a wheelchair, as if they are the ones having their rights violated.

It is a situation that I have experienced first hand. My parents and I are fortunate enough to be able to afford to visit the West East once or twice a year to see the latest musicals (or in my Dad’s case sleep through them). Because Dad doesn’t like driving in London, we catch the train from our local station to Charing Cross. On one occasion, we got on the train only to find the disabled space had been taken up by what can be best described as a ‘chav’ and her three daughters. My mum politely asked her to move which she did with much rolling of eyes, muttering that the space was ‘for kids too’. When my mother challenged her, she exploded in a tirade of foul language, saying if mum ‘hadn’t been so old  she would slap her!’

I understand that having children is both a joy and a trial, but I fail to understand the attitude certain people have that their off-spring should be the centre of the universe. They might be to you but to the rest of us they are simply another person and that is a lesson they will have to learn one day. By not displaying consideration for other members of society, parents are teaching that they are the only person who counts and one day they will be in for a tremendous shock to find out that isn’t the case.

Meet Sallie

By | Disability, Lifestyle, My story | No Comments

 

‘Hi, I’m Sallie and I have Holt-Oram Syndrome. It affects my upper limbs, back and heart. I don’t have any thumbs, but I do have nine fingers. I’m also missing a few bones and muscles here and there, and use my right arm for pretty much everything. Oh and I have a pacemaker, but my heart’s okay now!’

IMG_0640.JPG      My condition is so rare that over the years I have perfected this introductory statement in order to provide inquisitive people with a brief explanation as to why I am the way I am. It no longer surprises me if a doctor starts tapping ‘Holt-Oram Syndrome’ into Google, or begins flicking through a medical book in the hope of finding a definition. Aside from my condition, I am an illustrator and work part-time for Enhance the UK – I also illustrated Enhance the UK’s first ever children’s book which is due to be published later on this year.

 

Holt-Oram Syndrome (HOS) is estimated to affect 1 in 100,000 individuals and is caused by a mutation of the TBX5 gene. The condition affects the upper limbs and in roughly 75% of cases the heart is also affected. The heart problems linked to HOS generally cause a defect in the muscular wall. Atrial septal defect (ASD), vetricular septal defect (VSD) and cardiac conduction disease are amongst the most common heart problems experienced by people with HOS. To date, I have been diagnosed with two out of three of the above heart problems; my first surgery being when I was two years old, with my most recent occurring a month before I started university at the age of 19. I am due to have my pacemaker changed soon – I don’t know when yet, but it’ll definitely be within the next two years and this terrifies me. For the standard person, pacemaker surgery is a fairly straightforward procedure, but for me it caused two years of chest pain – simply because my anatomy is that weird and there just wasn’t room for a strange metal object to be implanted underneath my wonky ribcage.

 

Strange as it may sound, my unusual hands have had names since I was tiny. My left is Little Hand whilst my Right is called Big Hand. My left arm is more severely affected; I don’t have a ball and socket joint in my shoulder, the ulna and radius bones are fused and out of my four fingers only two work because the others are stuck in a bent position. I also have lymphoedema in my left arm, basically because my lymph nodes are too tiny to drain fluid. My right arm is less affected – but ironically, causes me much more pain. I have five fingers but no thumb and I’m missing bones in my wrist. My shoulder and collarbone are also a bit unusual and I rely heavily on my right arm to work hard as my left side is pretty weak. Naturally, this imbalance causes tons of pain – and I have lived in constant musculoskeletal pain since I was a child. I’m an absolute expert with prescription drugs and I take a whole cocktail of these daily – my friends constantly joke about this – I’m thrilled I can be a source of amusement but I do wish the medication helped a little bit more.

 

Luckily, I have a wonderful chiropractor and a lovely physiotherapist, and they’re both very familiar with how living in pain can make me switch between being highly stubborn one minute, and an emotional pity party the next. Heat is also an absolute lifesaver, and during my time at university I constantly relied on my friends to do hot water bottles for me. I’m also massively fussy with beds, my boyfriend and mates joke that I am the Princess and the Pea but it’s totally true – I can’t book a hotel until I can be assured that they have soft, memory foam mattresses!

 

Before having read this you may also look at photos of me, or meet me in person and question what’s even wrong – especially because I pride myself in ensuring that I don’t look any different to other 25 year olds (except for the fact that I have a baby face). This is why I am passionate about working for Enhance the UK – I am here to represent those with disabilities that may be a little less visibly obvious. Even though my disability isn’t strictly ‘invisible’, I wear clothes that hide my scars and don’t accentuate my disliked body parts. This is a habit I grew up with – as a child I never thought twice about wearing my wrist splints at school (especially because my best pal and I had drawn cool characters and scribbled bubble writing all over them to make me look particularly sassy…). However, this all changed when I started getting severely bullied and called the most imaginative names by a group of nasty girls at school. Bullying totally knocked my confidence, and from then on I over-compensated for my disability by making sure I always had the nicest, coolest clothes that would hide my splints. I still feel the same now, and wouldn’t dream of going out wearing splints or any other disability accessories, even if I require them. This stubborn attitude has backfired though – and these are issues that I will elaborate on in my upcoming articles for Enhance the UK.   Aside from dressing in a certain way, it’s second nature for me to act ‘fine’, and I guess this is kind of lying to everyone, and myself? But, living in pain is just…hard? It’s draining, tiring and frustrating but, on the plus side, it has equipped me with an incredibly steadfast and resilient personality.

 

So, this is just a sort-of introduction, there’s tons to build on – and so many ‘hidden disability’ tales that I can’t wait to share.

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