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Apr 14

Motability? If only…

By Disability, Lifestyle One Comment

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.

 

A photograph of a car

Apr 11

Trump’s a chump but Thunder’s no blunder

By Disability, Lifestyle, News No Comments

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.

Apr 08

In A Spot Of Bother With The Kids

By Disability, Lifestyle No Comments

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.

 
A photograph of a person with chicken pox

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.

Apr 08

Meet Sallie

By Disability, Lifestyle, My story No Comments

 h

‘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!’

A photograph of Sallie wearing a brown jacket. She is smiling.      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.

Mar 21
George Osbourne

There is only so much you can take Mr Osborne

By Disability, Hollie Williams, Lifestyle No Comments

Written by Holly Williams

Well it has certainly been a lively week in politics and in what seems to be becoming a nasty habit. Disabled people have once again been brought into the limelight of much of the Government’s cost cutting with Chancellor George Osborne announcing in Thursday’s budget plans to save £13billion a year by slashing payments for care aids such as walking sticks, wheelchairs, hand rails and other equipment that many people rely on to deal with basic needs such as washing and going to the toilet. This latest action is just the most recent step in a long line of measures by the Conservative party that seem to solely exist to punish and persecute the most vulnerable members of our society, which has also included the creation of the bedroom tax that penalises many disabled people for having necessary space in their homes for carers or equipment and brutal reductions to the PIPs benefit scheme that has seen a severe drop in the funds many people use to pay for support to help them live full and active lives.

Is it any wonder that so many disabled people feel victimised by this Government over the past eight years? The focus on money saving targeted at those in our society who need the most assistance and protection is now bordering on nothing more than blatant prejudice. Maybe there is something of an echo back to the days of the Thatcherite 1980s still hanging over the mind-set of the Tory party, the memory of the old ‘get on your bike and find work’ Norman Tebbitt attitude that those who don’t contribute to society financially must be given short shrift until they do.

But the reality is that the individuals who suffer the most from these cuts are on the whole unable to work and those who could possibly earn a wage are finding it harder to do so because the basic support that allows them to engage in society, simply get out of bed and dressed in the morning is being taken away from them. Perhaps the attitude of the Conservative party is even more cynical than that, perhaps they are using disabled people as their scapegoat because they are aware that they are a group whose voice still goes unheard, a minority small and powerless enough but who soak up a significant percentage of the country’s funds that their pockets can be picked to make up the national deficit. It can’t help feel like a smack in the face to learn that the savings made by the most recent rounds of cuts more or less equal the tax bonuses being offered to middle class families. What is even more hurtful is the knowledge that the Prime Minister David Cameron was the father to a disabled child and many believed that this factor would make him more sympathetic to the plight of disabled people and their families, when the opposite appears to be true. Perhaps the fact that Cameron comes from an highly affluent, privately educated family means he was able to finance his son’s care himself and has little knowledge of how hard an ordinary British family has to fight to provide essential assistance that disabled people so vitally need.

But as physics teach us, when you push against something you’re bound to find the point of resistance and it would appear that with the cuts to disability provision , that point is coming very close. The ripples of Osborne’s budget are already reverberating back towards him with blows coming from very close to home. Friday night saw the resignation of Work and Pensions Minister Ian Duncan Smith in a open letter to David Cameron in which he calls the budget cuts a ‘compromise too far’. But this is a man, you remember, who oversaw many of the most severe penalties against the Government support of disabled people so one does have to question whether this change in attitude is down to a wounded conscience or a political play in his own career. With the tide of outrage against these cuts growing in volume, is it possible that Duncan Smith is simply getting out while he still can in the hope of retaining a small shred of dignity? His outcry against his colleagues may look like a flag of hope to many fighting the cuts but I find it very hard to believe it will mark any state of real change of attitude by the Conservatives towards disabled people. Until I see real positive action and change in current policy, I won’t be holding my breath.

Mar 14
Close up of eye with eyetest screen relected in it.

The Iceberg Effect by Holly Williams

By Disability, Lifestyle No Comments

A while ago, my mum asked me idly if I could get rid of any part of my disability what part would I pick. She was referring to my Cerebral Palsy which pretty much affects my entire body. At the time, I told her I probably wished I had better speech as I find it quite hard to join in with conversations with people and the way I talk gives the impression that I have learning disabilities. But as I’ve gotten older, I think I would like to change my answer. If I found a genie living in a magic lamp who was able to spirit away part of my medical condition I would tell him I was quite happy to live with all the obvious impairments I struggle with but would be eternally gratefully if he could zap to oblivion all the stuff that people don’t see right away; the problems and difficulties that from the outside seem like nothing but as I get older are becoming more of an issue for me.

I think that is one of the reasons people who aren’t disabled have such a difficult time relating to people who are. Because unless you actually have a specific condition, you have no idea of all the little hidden extras that go along with it that the person has to deal with just to keep going every day. I’ve been thinking about this a lot over the past couple of weeks because in that time I’ve found myself having to deal with a lot of the extra stuff that comes along with having my disability and quite frankly it’s been getting me down. It can feel like you signed on for having trouble with movement or speech and get geared up to cope with that and then another part of you starts to think ‘I’m bored with being left out of this whole disability thing, I want to have a go.’ I try not to let it get to me but there are times, like this week, when I think, do I really need something else? I thought I had everything sorted.

For example, I’m epileptic and, as Michael Caine says, not a lot  of people know that. Not a lot of people know it because after spending most of my childhood trying out different meds, I finally found the one that works and, touch wood, haven’t had a fit for about 20 years. The problem is that these drugs also cause tunnel vision so this week, as I do every year, I had a three hour drive from my home to King’s College Hospital to check that I’m not going blind. What gets to me is that I know my eyesight isn’t effected by my CP because all through my childhood I had 20/20 vision. But to live my life semi-normally I have had to literally give up part of my sight so I don’t have a fit every couple of days. Don’t get me wrong, I’m not wandering round like Mr Magoo, I can still do everything I want to, it just makes me question the fairness of the universe when I am told I’ve lost 10% vision in one eye because of something that’s meant to help me.

Then there’s the side effects of the side effects, the fact that I have to deal with the whole test in the first place. The getting up at 6am to be on time for my appointment, the long journey that leaves me tired before I even have to concentrate on the test. The ability King’s have to lose my notes so the specialist doesn’t know whether he’s testing my eyes together or individually, not to mention that once I’ve had the main test the staff manage to forget both me and the poor guy next to me in the waiting room so we’re still sitting there when the afternoon paediatric clinic starts. This time I got an extra treat, something new that I wasn’t expecting, a glaucoma test, he didn’t even warn me. Just when I am thinking we’re on the home stretch, I hear the phrase, ‘Right, I’m just going to numb your eyeballs.’ Excuse  me, I’m not at doctor but I do know that when you numb something it is to stop pain. I wondered what he was going to do. I did really want to be a helpful patient and I can only apologise to the poor Asian male nurse for the stink my body kicked up. I knew he was only doing his job, unfortunately my muscles didn’t.

Anyway, I’m sorted for the next 12 months but it just gets to me that I don’t feel like I signed up for this when it’s not directly related to my CP. I am getting better though. Slowly, as I grow  older I am realising that like my walking and speech CP is going to give me these unexpected gifts and it does no good to get angry about them. Just have to hope next week will be better.

Mar 09
houses of paliament

Update on our Campaign for better access and improved disability training for door and security staff qualified through the SIA

By Business, Disability No Comments

UPDATE 09th March 2016

We’re delighted to announce that through our campaigning we have arranged a meeting with Justin Tomlinson MP (Parliamentary Under Secretary of State for Disabled People) and Norman Lamb MP (Shadow LD Spokesperson on Health) to meet with Jennie Williams (CEO, Enhance the UK) and Gary Mazin (Head of PR & Marketing, Enhance the UK) to discuss the EDM motion 1103 about giving disability awareness training for security staff. This meeting will be held on Thursday 24th March at 10:15am, Department for Work & Pensions, Caxton House.

We can also confirm a meeting has been arranged for Jennie and Gary to meet with Tony Holyland (Development and Technical Manager, SIA) and Karimah Pedro (Competency Officer, SIA) at 12pm on Thursday 10th March.

Background

It feels like we have come a long way with our campaign which started back in January after I’d been refused entry into the Fire Station Bar by the doorman. At the time I had no idea that what was an extremely traumatic experience, could turn out to be a real positive for the disabled community.

It became clear that the Security Industry Authority (SIA) needs to improve its clarity and ensure disability awareness training is given to all people who receive the qualification as a door supervisor or security guard.

We then spent a lot of our time and energy lobbying MPs and trying to bring this important discussion as much publicity as possible.

After a lot of campaigning and discussions Norman Lamb MP agreed to table an early day motion to discuss this in the House of Commons. Over the course of 3 weeks, this motion has received 29 signatures (and counting!). We also managed to gain support from Lord Holmes and Baroness Campbell. As the MP for Lambeth where the original refusal took place Kate Hoey MP also helped by writing directly to the Home Secretary and Justin Tomlinson.

Full details of how this campaign came about can be read here:

http://www.standard.co.uk/news/london/partially-blind-man-refused-access-to-waterloo-bar-and-shoved-because-he-had-guide-dog-a3156866.html

http://www.disabilitynewsservice.com/security-industry-silent-on-flaws-in-disability-equality-training-for-bouncers/

The current EDM:

http://www.parliament.uk/edm/2015-16/1103

Mar 03
coming soon - white text on black square

Coming Soon: Liability Magazine

By Disability, Lifestyle No Comments

We are incredibly excited to announce the release of our new online disability and lifestyle magazine – Liability. Our fabulous fierce female writers and vloggers have a range of disabilities and are here to cover all kinds of topics from current affairs to fashion and beauty. We wanted to create this magazine as an outlet for all the amazing women we know who are doing incredible things, and also happen to be disabled.

Many bloggers with disabilities have huge followings and it’s not hard to see why. Approaching topics so often dominated from the able-bodied perspective, disabled bloggers are offering an insight into a world that many people don’t get to see.

But of course they don’t ALWAYS have to mention their disabilities. That’s not necessarily what makes them them. In an increasingly more diverse world, especially on the internet, differences are to be celebrated and anybody can and should voice their opinion about what they are passionate about, whatever that may be.

Liability is about confidence, adventure and being yourself – no matter whose toe’s you may step (or wheel) on.

To find out more about Liability magazine or to get involved, please email hello@enhancetheuk.org.

Feb 29
Beth smiling at the camera.

Everyone Deserves Good Service by Holly Williams

By Disability, Lifestyle No Comments

As anyone who has been reading this blog regularly will realise, my main focus is, on the whole, stories and matters that mainly concern people with a disability. Partly I hope that by giving my opinion in an entertaining way, I will be able to help shed some light on what it’s like to be a disabled person living in Britain today. The problem with most of these stores, if you could call it a problem, is that the issues they raise usually are only relevant to people with impairments. However, there was a story this week about a disabled person that totally overlooked the fact that the issue it raised could have happened to anyone and it only became newsworthy because it was a disabled person who was unfortunately the victim.

It involved mum-of-three Beth Lloyd from Ashington West Sussex who has Crohn’s disease and arthritis. Like many busy modern mums, Beth does her weekly shop online, via Tesco’s website. Recently, she made the mistake of booking the wrong time slot for her delivery, meaning that her groceries arrived an hour earlier that she was expecting and therefore she was not able to get to the door in time to answer it. Her husband got there just in time to see the driver depart and found that he had left a card addressed to ‘Mr & Mrs I Can’t Be A***d To Go To The Shops.’ While it’s understandable that for someone with Mrs Lloyd’s limited mobility such a crass remark is deeply upsetting and offensive, the reporting of this incident glosses over one vital factor. It is a news story solely because Mrs Lloyd was physically unable to get to answer the door. But even if she had been, even if she was a perfectly physically fit individual who had just popped out to her back garden when the delivery man just happened to arrive, it doesn’t give him the right to insult her. By making the story about Mrs Lloyd’s disability, the media seems to be saying that had she been able-bodied the rude note would have been less insulting. Okay, the sentiment might not have hit such a raw nerve but surely no-one deserves to be called lazy just because they made a mistake on an online form.

Tesco offers this service because they are able to and it makes them money so the people paying for it should expect to receive their goods in a courteous and professional manner. Yes it might be annoying for the driver to turn up to a house where it appears no-one is home and I wouldn’t blame him for having a moan to his colleagues about it. Everyone who works in retail has had to deal with a difficult customer.  But that doesn’t give you the right to make snide comments to their face (or in this case push them through the letter box). You receive a wage to do a job and in all cases there are going to be aspects of that job that bug you but you have just got to deal with them like an adult and vent at an appropriate time. Whoever pays the piper calls the tune and in another situation, when you have the money in your hand you’ll expect to be treated with a bit of respect. That’s how it works. If the driver bought a shirt from M&S and had to return it, he wouldn’t be happy if the person on the counter called him a ‘stupid, fat git’. Having a disability doesn’t give you extra rights not to be insulted by the people you receive services from, that should be something we should all expect and give. I’m just baffled that the driver would think it was appropriate to leave such a note and not have it come back on him in some way.

Perhaps big business is to blame, (it usually is). Perhaps it’s a trickle down effect, companies don’t respect their staff so staff don’t feel they should bother so much. Maybe. But then again, I was brought up with a different work ethic. For me, if you do a job you should do it well not for any financial or exterior reward but for your own self esteem. Yes, the people you are working for might not appreciate it but at least at the end of the day you can say ‘I’ve done my best. If people are unhappy, it isn’t because of something I’ve failed in. I’ve given my all as a designer/carer/Tesco driver/poodle juggler and no-one can take that away from me.’ There is a reward in that feeling like no other, because it’s a satisfaction that’s earned and given by yourself to yourself. And if we all did that, not only would our self esteem swell but we would all receive a better quality of service. Or at least not get the sack!

Feb 24
Small black dog wearing a maroon hearing dog coat.

Doggy Diary – Tails from Ivy the Hearing Dog

By Disability, Lifestyle No Comments

I have decided to keep a diary about all the exciting things that I get up to with my recipient, Claire. Recipient is just a posh word for the person who is lucky to have me as their hearing dog. She isn’t my owner as the charity Hearing Dogs for Deaf people still own me so I don’t call her that. I like to think of her as my partner – like a partner in crime, as we get up to all kinds of things together. I work hard for Claire, because she is deaf. It’s my job to alert her when there are different sounds. I really do enjoy every minute. There is nothing I like more than putting on my coat and going out to work. You see, I am a working dog and not just a pet. If you keep reading my diary posts I will show you how I work and the things that I do for Claire.

Monday 25th January

Wow, what a day! I was not happy this morning as Claire had me leaving the house really early in the morning out into the freezing cold. Claire is a trainer for Enhance the UK and was training at Gatwick airport so onto the train we jumped. Luckily she remembered to bring a bed for me as I really don’t like lying on the dirty floor of the train. It wasn’t a bad journey although Claire got cross as a lady asked her to move as she didn’t like dogs. Claire refused so eventually the lady moved. This was good as it gave me more space to relax in. I slept the whole way to Gatwick. This isn’t my first time at an airport; I have even been on an airplane before! The training was good as I got to meet Gibson the Guide dog. He was huge! Sometimes being small can be difficult for me as people cannot read my coat properly and do not realise that I am a hearing dog! They try and tell Claire that I am not allowed in places and then she has to stop and explain that I am an assistance dog. Assistance dogs are dogs which are trained by charities to help people with disabilities. I have a special logo on my coat to show that I am an assistance dog.

Monday 31st January

Claire is working from home today which is great, as I get to spend the day lying in my bed beside her. I tell her when the telephone rings by gently scratching her legs and taking her to the sound. She took me for a lovely walk at lunch time with my new ball which was great as I love playing fetch.

I scratch Claire’s legs to let her know when the telephone is ringing and then take her to the telephone.

Saturday 6th February

I went to Birmingham today to do a photoshoot. Claire’s going to be writing for a new magazine Liability and wanted me to be in the photos with her. She hates her photo taken and was happier because we had our photo taken together. There was lots of waiting around in the studio in the cold so Zoe (another writer) wrapped me up in a blanket to keep me warm and gave me cuddles! I will share the proper photos of me with you when I get them but here’s a picture of me posing for the camera.

That’s all for now but I will tell you some more tails soon!

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