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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 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!

Feb 15
The Mighty logo

(Sometimes) Parents Should Be Seen and Not Heard! by Holly Williams

By Disability, Lifestyle No Comments

A while ago, I got wind of a very interesting debate that sprung up on The Mighty, a website that deals with various disabilities issues and features content written both by disabled people and carers. The controversy centres mainly around two articles the site published by parents, one that featured photos of a couple’s severely disabled 16-year-old son  in nothing but a nappy and the other by a mother of a autistic child who made a ‘light-hearted’ bingo card featuring possible scenarios of their child’s regular temper tantrums. Many of the disabled visitors to the site were outraged by such content, finding it highly disrespectful and demanded it be taken down while parents felt that their voices and opinions were being unfairly silenced from this outlet when all they were attempting to do was educate the wider audience about the difficulties faced by disabled people and their families.

Before I start, I just want to state that I do understand that having a disabled child is an extremely challenging and stressful experience at times. I also am convinced that the parents who wrote these articles love their children a great deal and meant no harm by sharing what life is really like for them day-to-day. But I do question whether in their eagerness to explain to people the perhaps-overlooked problems they face, these parents are exposing private details about their child in a public arena when they don’t necessarily have the right to do so and it isn’t in their child’s best interests. Moreover, by talking so openly about their child’s needs and impairments are they in fact portraying their offspring as only these facets and not as complete and whole people who they love and cherish. No doubt, the intent is to alter the world to be better equipped to deal with and accept their sons and daughters as they grow, but in doing so are they sometimes choosing methods that expose too much about these young people, whose disabilities are so severe that they are unable to give their consent for such exposure. Surely, when this is the situation, it is a parent’s responsibility to act as a gatekeeper to their children’s privacy.

I can see how being the parent of a disabled child can be an isolating experience and I can understand how the vital support given and received by a extensive wider network of family, friends and others can be a much need resource to parents for sharing their worries and emotions. But when that network extends into the virtual world it allows anyone access to information that once perhaps was only accessible to professionals and those closest to the family. We now live in a digital world, where people seem more and more comfortable with sharing a greater amount of information about their life via the net. It is no coincidence that this has happened along side more and more disabled people speaking out about their experiences in life. What was once hidden away in private can and now is discussed. But for people like me, and my parents, who put great value on privacy and still feel like personal care is a matter that is best shared with the fewest people possible, it can be a very uncomfortable world. Many disabled people feel totally comfortable sharing intimate aspects of their needs to enlighten others about the challenges they face, I don’t. But to do so is their choice. The individuals written about in these articles have had that choice made for them by their parents and I don’t feel that’s right.

Like I say, being a parent of a disabled child is a challenging, tiring experience and people will get worn out, stressed and complain about it. My mum’s no different, she’s always saying to me how exhausted she is and how much she has to do. But that’s the difference. She says it to me, she says it to my dad and her siblings. She does not soapbox my problems and her concerns to every Tom, Dick and Harry she meets or uploads them to the internet (mainly because she’s not computer literate but if she did know how I doubt she would). This is because, in her words, ‘it’s none of their business’. My mum wants people to know about the daughter she’s proud of as a person, not allow them to view me through a prism of my impairments and what she has to do for me. Caring for a disabled child of any age is a 24/7 job and it’s very easy to get bogged down by the endless cycle of worry and care and forget what we take for granted. Maybe more parents should take a page out ofMaria Colon’s book and remember your child is a person too, no matter how much they rely on you.

Feb 11

The good, the bad and the ugly… by Simone Mazin

By Disability, Lifestyle No Comments

During the past few weeks, a lot has been said (and written) about my husband’s distressing experience at a bar in Waterloo. Without wishing to go over old ground, he was initially refused entry into the bar as he had his guide dog Gibson with him. When he tried to argue his case, he was forcibly pushed backwards by security staff.

The fact this happened in London in 2016 has highlighted there is a clear need for more disability awareness training. Particularly for ‘front of house’ staff. However, rather than focus on the bad, I would like to talk about the difference it makes when staff have obviously had appropriate training – especially from a carer’s point of view.

I recently had a great night out. Actually, it was better than great. In fact, I would almost go as far as saying it was the best night I’ve had for a long time. It wasn’t a particularly extravagant night out. Dinner and tickets for the theatre on a rare date night with my husband.

Like most married couples of our age, after nearly 15 years of marriage and two children, everyday life sometimes gets in the way and spending quality time together regrettably doesn’t happen very often.

But here we were. Boxing Night 2015 and after the kind of meticulous planning someone from MI5 would be proud of, we were happily sat enjoying our food at a restaurant. Just the two of us. And Gibson. Noisily slurping from his bowl of water and if I’m honest, making a god awful mess.

As fabulous as Gibson is (and as much as I genuinely love him), three can sometimes be a crowd. The simplest of things that other people take for granted causes us a major headache. Walking in public places with a dog shouldn’t cause that much hysteria but it really does. Reactions tend to vary from strangers openly staring and pointing, overly petting and stroking Gibson while he is trying to work to the more extreme reaction of literally screaming and running away.

We all know Joe Public can be an ignorant bunch and this kind of extreme reaction can’t be prevented. However, I believe it’s a different story for the service industry. I have lost count of the number of times we have been turned away from shops, supermarkets and other various public places because of their ‘no dogs allowed’ policy. It’s particularly bad in restaurants and bars. It is fair to say that not all, but most allow us in once we’ve explained Gibson is a guide dog and legally is allowed anywhere. But why should we have to explain? Is there such a lack of disability awareness training in this country that restaurant staff don’t know what a guide dog’s harness looks like? Do they really think it’s some kind of trendy fashion accessory? ‘Oh look, our dog’s rocking the hi-vis jacket look’.

I’m usually on edge before we’ve even entered a restaurant because I know 9 times out of 10 we will be challenged. It kind of kills a romantic night out when we have to request to see the manager before we’ve even glanced at a menu.

Sometimes my husband decides not to take Gibson with us and this is usually fine. Over the years, I have perfected my role as his human guide dog. We hold hands. Not because we are desperately in love and can’t bear to be parted but so I can guide him. Sorry if this bombshell disappoints anyone. I gently steer him right and left and squeeze gently to make him slow down. Occasionally the gentle squeeze turns into a knuckle breaking clench when an unsuspecting pensioner or small child walks across his path. It may be unconventional to some but hey, it works for us!

This is all very well and good when we are walking around. But when we go to a restaurant, I have a different issue altogether. Firstly, a lot of restaurants are not suitable for us because of atmospheric lighting (candles or dim lighting would be perfect for my husband if he had no interest in seeing what he was actually eating). Then there are other questions that need to be answered: Is there an accessible toilet or will my husband need to walk down hundreds of steps in the pitch darkness and then navigate through a badly lit corridor just to do a wee. And how about the general layout of the restaurant? Are the tables so close together that he will knock over numerous plates and glasses of wine before he’s even reached the deadly stairs. I dread him saying on nights out that he needs the toilet. I am embarrassed to say I once asked him if he could not just ‘hold it in until he got home’.

Back to our date night. My husband had booked tickets to see the Illusionists at the Shaftsbury Theatre. We wouldn’t normally take Gibson on this kind of night out and in the past, have asked a family member or friend to look after him for the evening. However, being Boxing Night, most people we would normally ask already had plans. My husband decided the best option would be to take Gibson with us. I have to be honest, my heart sank a little when he said this. The feasibility of finding a suitable, well lit restaurant with lots of space, accessible toilets, with staff who would understand we needed a table with a little extra space (and not just shove us in the corner so we are out of the way) in Covent Garden on a Saturday night seemed slim to say the least. And what the hell would we do with the dog during the show?

According to my husband, the theatre had been completely ‘on the ball’ when he booked the tickets and offered a service whereby they would look after Gibson during the performance. The sceptic in me imagined this to be utter bullshit and I had visions of us not being allowed into the theatre and me ‘dog-sitting’ Gibson while my husband relaxed and enjoyed the show.

The reality couldn’t be further from what I had imagined.

Firstly, we chose to go to the Central St Giles branch of Byron Burgers. This was mainly because the restaurant was bright, spacious and airy (big mental tick). I opened the door and prepared myself for the usual ‘no dogs allowed’ greeting. Imagine my surprise when the waitress looked at Gibson, looked at my husband and I and simply asked ‘table for two?’ The staff had obviously had training because the service really was faultless.

After such a positive experience, it was then time to go to the show. Like at the restaurant, the staff at the Shaftsbury Theatre were incredible. The staff looked after Gibson during the performance and even took him out for a couple of walks while the performance was on. At the end, Gibson was waiting for us in the foyer, all harnessed up and ready to go.

During the drive home, I happily reflected on a fabulous night out. How amazing it was to have such a stress-free evening. To be treated like human beings and not to be made to feel like you are an inconvenience seems like such a simple thing to expect but people so often get it wrong. Just a little bit of awareness training really can make a world of difference.

So, to the staff of Byron Burgers and the Shaftesbury Theatre. A big thank you from me for getting it so right. I’m not sure if you realise but you totally made my night.

Feb 10

Disability isn’t a Face Value Matter by Holly Williams

By Disability, Lifestyle No Comments

I like to think of myself as a rational, level headed individual, who doesn’t see herself as a victim just because she has a disability.  I also like to believe that most of the prejudice that I and other disabled people face comes purely down to people’s misunderstandings about disability and not deliberate dislike or hatred.

But now and again, I will read something that makes me question how able-bodied people really view us and whether there is a hidden agenda out there that believe we are the enemy. This week saw a partial triumph for many disabled people throughout the UK when it was ruled that the government went against the human rights of 15-year-old Warren Rutherford who has a severe medical disorder when they demanded that his family pay the controversial bedroom tax on the room used by carers who assist with his overnight care.

However, the government is now appealing the case, which also deals with the incident of a victim of domestic violence who was taxed on the panic room in her home, even though costs of legal action will total more than would be lost by dropping the case. I want to believe that the government’s motivation was purely financial, it wouldn’t make the tax any less problematic but it would at least make it seem less like victimisation.

But the fact that it is costing more to fight the decision than to abide by it leads me to feel that the government are doing so because of some ‘moral’ reason. That they believe that people like the Rutherfords are somehow ‘getting away’ with something. It’s a troubling attitude and worryingly I wonder if it is the sole reserve of just those walking the corridors of power or whether our elected ministers are just doing what they are meant to by reflecting the attitudes and beliefs of society as a whole.

I imagine, it is very hard for someone who doesn’t have a disability or a person with a disability in their family to understand fully the day-to-day difficulties faced by those who do. Looking at someone who uses a wheelchair, for instance, the instinctive assumption maybe that that person ‘just can’t use their legs’ but the extent of every disability goes way further than the symptoms that are visible to the passer-by. Sometimes a disability may even be invisible such as epilepsy, asthma, heart disease, cancer and innumerable mental illnesses. Disability impacts every area of your life and the life of those around you, sometimes in ways you would never begin to think about.

Only those who live with particular problems on a permanent basis have a full understanding of the impact they have and what is needed to allow them and their families to function. A civilised government should be one that caters for the needs of its most vulnerable citizens. It is very easy to look over the fence and see a greener grass but it’s vital to remember that something that might be seen as an unnecessary luxury such as an extra bedroom or regular massages might make the difference between a bearable life and one filled with pain. A misunderstanding of the fight for equality for disabled people is that everyone should be treated the same and disabled people are hypocrites for expecting ‘perks’ such as special parking. This is something I’ve written about before so I’ll try not to repeat myself. The point is that it’s not an equal playing field out there, that is the very nature of disability, and people should not be penalised for needing things that others do not. It angers and troubles me that  so much of the Conservative Party’s attitude to disability seems to be that it can be ‘motivated’ out of people. By slashing benefits disabled people will have to integrate more, that all we need is a short sharp shock. Not only is this idiotic, such policies send out the view to the general public that disabled people have it too easy. Everyone loves a scape goat, someone to vilify and blame society’s ills on and recently it seems like disabled people have taken on that mantle.

But the bedroom tax  is only one battle ground.  Around 14,000 people have already lost their mobility cars due to cuts. For many, such vehicles are their only means of accessing wider society and combating isolation. But many are denied this because they can ‘walk a short distance’.  Maybe so but facts such as these do not take into consideration the amount of energy it takes to do such a thing or the inconstant nature of many conditions. The person with a blue badge might walk from their car easily today but doing so might mean they need the rest of the week to recover.

Disabled people need to make themselves heard. As hard as it is for people like me to talk about our physical limitations, it needs to be done. Because if our problems aren’t seen, they won’t be seen to matter.

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