Disability

My name is Naomi.
They say that I was born in the Netherlands, but if you ask me, I’m not.
I never had the feeling of being home, not even in the house that they called my home.
For years I struggled to find it, but I failed every time.
I ran away multiple times and lost more then I expected.

After all that, I realized.

I was simply born in my body.

In my childhood days I had to ignore and endure the pain my body felt on a daily basis.

Stop whining, just carry on and stop clowning around.

I always had to remember, that my mom was the one with chronicle pain and not me.
It were the days that her thoughts and pain were leading my life and I was only seeking attention.

I remember myself sitting in my room, with my strawberry blond hair wrapped up in pig tails,
freckles all over my face and braces.

It was my safe haven in a house where I didn’t belong.
I had the feeling that my room had the power to protect me, nothing bad ever had happened in there,
till the day that I was behind my computer searching for friends to talk to, after a big fight with my brother.

My brother intervened a quarrel between my mother and I, something he always did.

He told me I had to stop asking my mother for help, that I should cut her some slack and let her be.

Mom already had enough on her mind and my teenage problems weren’t of her concern.

After the necessary screams and belittlement I fled upstairs.

I stopped and waited for a few minutes in the hallway, in case he would follow me.

I listened to my brother arguing with my mother, hearing them argue about me.

When I almost couldn’t hear them anymore, I went to my room.

When I was lying in my bed, I heard angry footsteps on the stairs.

My body shook and I tried to run to the hallway, but it was too late.

I always tried to prevent him from entering my room.

This time my efforts were in vain.

My body felt like stone, I couldn’t move.

I saw his intimidating and angry stature drawing nearer and nearer.

He pushed me into the window frame several times, threatening me.

Screaming so much I don’t even remember what he was screaming about.

He raised his hand, ready to strike out to finish it once and for all.

That was when my other brother, let’s call him Andrew, rushed in.

He probably was smoking a joint in his room to escape from reality, but I guess something in his brain knew that there was no way out.

I remember them arguing and shouting at each other in MY room.

As if what happened previously wasn’t already awful enough.

But I didn’t care anymore, my safe haven was already ruined.

I silently waited for this to end, until I heard Andrew’s following words.

“No matter who did what, that’s your little sister. You will have to work it out together.”

With that being said, I sneaked out.

This was the last time Andrew helped me.

He soon moved out to be with his girlfriend and the situation became worse than ever.

Now my both ways to protect myself disappeared and I felt completely alone.

My name is Naomi.
They say that I was born in the Netherlands, but if you ask me, I’m not.  I never had the feeling of being home, not even in the house that they called my home.  After all I experienced, I realized I was simply born in my body.  This brought me to the idea of inspiring others, teaching people that you CAN live with traumatic experiences and how to use the lessons life gives you to create something beautiful.

On the 17th of April I attended a study session in Strassbourg on “Supporting Young Disabled People to Explore Sexuality and Relationships as Integral to their Social Inclusion and Independent Living” hosted by ENIL, The European Network on Independent Living.ENIL is a Europe-wide network of disabled people, with members throughout Europe.  They represent the disability movement for human rights and social inclusion based on solidarity, peer support, deinstitutionalisation, democracy, self-representation, cross disability and self-determination.

After the 10 hours long travel from Amsterdam to strassbourg my girlfriend and I were exhausted.  We arrived at the Council of Europe Youth centre just in time for the introduction evening.  We tried to look as normal as possible and faked a smile.  The next morning there was no change, the pain in my body worsened and I had to use the wheelchair that they provided for me.
At home I mostly use a walker, but most days I have too much pain to get out of my bed, so I truly appreciated the wheelchair.

I always have had pain related issues throughout my life.It always ignored, dismissed and never diagnosed until Joy, my girlfriend, and my mother kept nagging and insisting I’d see a doctor.I didn’t want to accept the fact that I was 20 years old and disabled, having to use a walker or a wheelchair for support.The week in Strasbourg helped me accept myself and my disability more and for that I am grateful.The relationship between me and my girlfriend has also gotten stronger, because we understand and communicate more.

I’ve made many great connections and friends as well, two of them being Jennie Williams and Emily Yates. You may know these amazing women as CEO and trainers of Enhance the UK and of course the online magazine you’re reading right now, Liability Magazine. They graciously asked me if I would be interested in being a part of the Liability Magazine and become one of their international writers. Feeling honoured and without a doubt in my mind I said yes.

Now here we are, with just the North sea separating us, I am given the chance to tell you my story.

Holly Williams

I really hope everyone out there has enjoyed my last couple of fairly lighthearted blogs. A gentle dig at our queen on her 90th and my opinion on a West End show. I’m glad I could give you a little holiday from the heavier issues of disability that I normally address. Because today I want to delve into something a wee bit more controversial. Well, I am informed it’s controversial, I didn’t really realise it was and that’s the issue here. If I’m not being clear, let me start from the beginning and explain.

Last week, marked a slightly unwanted first for my online life, I got in my first Twitter argument. It all started because I commented on a Tweet posted by a person who, for reasons of privacy, I shall be calling Mr. X. He was commenting on ITVs programme What’s Your Miracle? which shows people with various disabilities undergoing pioneering medical treatments in the hope that they will help them.  I must confess that I didn’t actually watch the show. It clashed with my No.1 favourite programme Elementary and nothing gets between me, Jonny Lee Miller and Lucy  Liu. Anyway, Mr. X made the comment that he thought it was a shame that ITV felt the need to make a programme showing curing disabled people as a positive thing and they wouldn’t make one about homosexuality. I replied that personally, and I want you to keep in mind that I was only speaking for myself in this, if there was a cure for Cerebral Palsy (one of my impairments) that I would be the first in the queue. I also pointed out that sexuality isn’t as physically apparent as disabilities and people can choose whether they want people to know that they’re gay or not where as my disability is always obvious to those I meet. What I received next from Mr. X was a torrent of abuse, accusing  me of  being not only homophobic (something I am far from) but a ‘medical modeller’ who ‘didn’t like every aspect of themselves’.

I was shocked by such a reaction to what I believed was an innocuous, comment but more than that I was deeply irritated by Mr X’s disregard for my personal feelings and experiences and bizarre belief that I should feel proud of an aspect of myself that has caused me a lot of physical and emotional pain. I totally understand where Mr. X is coming from. His attitude is understandably born out of the noble beliefs of the disability rights movement that people’s disadvantages are born out of the inability of society to accommodate their needs. But this viewpoint, however well intended, tends to cause the development of an attitude that every discomfort and problem faced by a disabled person could and would vanish if society changed. That any feelings of unhappiness and inequality that would or do remain should be viewed as a weakness in character. I dislike the arrogance held by individuals such as Mr. X that because he is totally happy and capable of embracing his disability so should everyone else, and the desire to make life easier via changing their physical state is wrong and should be derided. You can never truly know a person’s history or view upon the world that affects their beliefs and sadly just as some of us are born or acquire disabilities not all of us are blessed with a constant resource of  inner strength. It’s very easy to sit back and decry the faults and flaws in others while holding up a moral ideal of how the world should be, but each of us are human and, as Mr. X is so keen to point out, influenced by the world around us.

When I was younger, I admit that my disability didn’t affect me as much psychologically as it does today but events in my personal life as well as deteriations in my health over the last decade has left my confidence shaken and I do wish that I didn’t have to deal with a lot of the personal difficulties my impairments brings. I know wishing for a magical cure is folly but if an easy answer to my problems did appear, what’s wrong in saying I would take it? I sometimes feel that there is an enormous pressure on disabled people not to show they feel any vulnerability and while its an admirable sentiment it seems to condemn anybody who is perhaps struggling to come to terms with certain aspects of their lives. There are, I’m sure, many individuals who view the pain and medical difficulties they face as well as the negative attitudes of others as an arduous daily challenge they could do without, something they must overcome through effort, not willingly embrace. While I find it hard to disagree when Mr X says that your disability does play a major part in moulding your character,  it doesn’t mean that everyone can be grateful for the influence that it has on their lives.

I don’t begrudge Mr. X his opinion but he should remember he doesn’t speak for everyone and his view, although politically ‘on message’ doesn’t necessarily chime with the reality of many people.

But I think my main problem with Mr. X’s attack on me is that he is in a very prominent position within the media and has built quite a career as the ‘official’ talking head for panel shows and the like with regard to matters of disability. In a way, I understand his passion at attacking me. It is born out of a lifetime being immersed in the disabled rights arena where everything is a fight or a confrontation.             Such a difficult environment can leave an individual with a chip on their shoulder and a permanent attitude that anyone who utters a single negative comment about any aspect of disability needs to be shouted down at once. But while it is important to continue to battle to change attitudes, I tend to find that those who are active within the area of disabled rights, and I include myself within this criticism, is they can end up fighting for what is right for them as an individual, with the onus on their own unique needs and desires and forget that other people with different disabilities may have other goals. When you start to decry or belittle others who also have impairments, you are in danger of losing focus on the very aim you are fighting for. It is an impossible task to fit the experiences and attitudes of your life, living with your disability to those of someone else with an entirely different impairment.

Let me give you an example of an instance when I found myself fighting for the ideal concept of disabled rights against someone whose reality was different. I work three days a week at a social firm which I enjoy. A friend of mine who is also disabled but who, to me, appears very capable and intelligent doesn’t work. For ages I did my best to convince her that the firm where I worked could support her and that if she wanted she could have a place there. I thought that having a job would benefit and help her because it did me, despite her saying she wouldn’t be able to cope. I thought she was being unmotivated and just didn’t want to work because no-one expected it of her. But then I realised that I was only meeting my friend for maybe an afternoon a week where she seemed fine, healthy and capable. I had no idea how tired those few hours left her or what the extra office hours would do to her health or care routine. I was applying what I wanted and could do to her just because we appeared to had similar disabilities. My friend ran her life the way she wanted and got out of it what was right for her. What right had I to badger or look down on what she wanted and did just because it didn’t match up to the ideal that as an disabled person we should all be fulfilled and strive for a normal life.

But getting back to the subject in hand, ITV’s show was called What’s Your Miracle? and for the people featured, the groundbreaking medical procedures they CHOSE to undertake were miraculous and by broadcasting them ITV might inspire and inform people with similar conditions on ways they could change their lives if they felt the need. If there was a operation to help me then yes, I may have it because it’s my life. No-one is going round forcing these people to become able-bodied and leave this mystical tribe of the so-called ‘disabled community’. It’s their decision and they shouldn’t be condemned as not loving themselves because of it just as I and no-one else has the right to call Mr. X a fool for saying he doesn’t see his impairment as negative. The world does need improvement for disabled people but why can’t that change be both medical AND social and allow people a choice?

In this blog, I try to make it clear that the views expressed are solely my own, one singular disabled woman with a unique set of beliefs and experiences. Anyone reading this site looking for a guide on the correct way to treat disabled people or a universal vox pop on the mindset of someone living with an impairment will be very disappointed. If Mr X is happy with his life, (and he has made a good career via his disability) then I don’t blame him for not wanting to change. But it doesn’t give him the right to attack me or anyone else.

Sallie Humphreys

For me, obtaining a Blue Badge was a massive palaver, and from speaking to other people with upper limb disabilities and congenital heart disease, they experienced the same issues, so this is a topic I feel needs to be discussed.

A Blue Badge enables disabled drivers and passengers to park nearer to their intended location, for example, much closer to shops and public amenities. This primarily ensures that the disabled person in question will not have to undertake as much walking as they would normally. The disabled parking bays are also much roomier, therefore allowing extra space for manoeuvring in and out of a wheelchair or using other mobility aids that may be required. Blue Badges are also sometimes granted to people with impairments that affect their ability to use the pay and display car park machines, but this is only if the person with the disability has their own car – this is not a specification with any other health problems.

A couple of years ago, I decided to reapply for Personal Independence Payment (PIP) as this was due to replace Disability Living Allowance (DLA). I was advised to visit my local Citizens Advice Bureau, as they are absolute experts at filling in these forms, and they’re just really kind and supportive. Whilst in receipt of DLA, I only received the lowest level for the Care component – this really shocked the staff at the CAB, as they were able to see just how much my disability has an impact on my life, so they were even more inclined to help me. Whilst going through the application form the issue of driving cropped up, obviously I told them I wasn’t eligible for Motability so couldn’t afford the adapted car that I required – but they didn’t understand why I wasn’t able to get a Blue Badge for use when I’m out with my friends or parents. Obviously, I explained that the last time I applied I had been unsuccessful because upper limb disabilities do not count unless you have your own vehicle, but they desperately urged me to try again. Seriously, who decided that lower limb impairments are more severe than upper limb? They’re both debilitating in different ways!

So, I did as advised and used the Blue Badge application form to explain about my disability and how it affects my arms, back and heart, I was then invited to an assessment day. I wandered into the assessment centre, and I was the only person in the waiting room without crutches, a walking stick or a wheelchair, so I already felt like I wasn’t supposed to be there – even though I was in my usual, excruciating pain, and wearing wrist splints. I just kept reminding myself that the friendly Citizens Advice Bureau people told me to apply, because I should be eligible. My name was called, and I looked up to see the assessor just looking at me with a super-confused expression on her face. She informed me that we’d be going for a walk around the outside of the building, so that she could assess my walking speed, I nodded, and then asked whether she’d had a chance to read my application form – because simply walking alone isn’t my own problem. The lady said she’d read it, but from her tone of voice I could tell she wasn’t at all interested in how my disability actually affected me – she literally just wanted to test my walking speed. As we went on this walk I desperately tried to tell her about my hands, my lack of thumbs, the fact that I only have full use in one arm, my twisted spine, having congenital heart disease, living in constant pain and being totally reliant on strong painkillers. I also attempted to tell her about how my hips and knees are affected due to my back pain, and how walking is just bloody painful – but I’ve lived in pain for most of my life – I don’t know what it’s like to be pain free, basically. To put it bluntly, she had no time for this – she was literally only concerned with walking. She wasn’t interested in my inability to carry bags, or the fact that my constant pain causes me to be dizzy a lot of the time. I could have easily staggered in with a fake limp, and automatically been granted a Blue Badge, and this seems plain wrong.

Anyway, it’s so surprise that my application got turned down. They seem to assume that, unless you have your own vehicle, someone with an upper limb disability does not need a Blue Badge. How do they know that the person driving the vehicle you’re in is keen to help by carrying your bags? Also, how can having someone with you limit your pain caused by generally walking and moving around? Unless that person is a pharmacist with access to some mega strong painkillers, it’s just not going to happen, and it isn’t realistic.

So yeah, after this rejection I just gave up really – it’s not worth the emotional upheaval of explaining my medical history to everyone for them to judge me within a five minute brief chat. It’s kind of draining. I know of so many people who gain them so easily, but why do people with upper limb disabilities have to be so open to disclosing medical information in order to get the support they deserve?

This was until I finally got my own little car (wooooo! Remember my last blog?) and my friends with the same disability encouraged me to apply for a Blue Badge. I mean, I drive an automatic adapted car and have a disabled railcard, why shouldn’t I be eligible for a Blue Badge? I painstakingly filled in my third application form, writing near enough the same as before, with super detail about how Holt-Oram Syndrome affects me, and hoped for the best. A few weeks later, I finally received some good news – I’d been granted a Blue Badge (without needing to attend an assessment day) and I’d receive it within a few weeks! Finally – a positive result! It’s just a shame that I had to go through so many negative experiences before getting this reward.

I also only use the Blue Badge when I desperately need it, like when parking at the train station and the car park gets filled up really quickly, so if I didn’t park in the disabled bays I’d have to park at another car park and walk over. I always dread that someone will make a comment about how it isn’t my badge, or accuse me of not having a disability, but luckily it hasn’t happened yet!  Although, if someone happened to have a look through my car window, you can see my steering ball on the wheel, my seat stupidly close to the wheel (so that I can read with both hands) as well as my wrist splint shoved on to the automatic gear stick!

Having a Blue Badge helps me psychologically just as much as physically – simply because it shows that someone has acknowledged my disability, and has taken the time to understand how debilitating it is, and this empathy means more to me than anything – I never take it for granted.

Holly Williams

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

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

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

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

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

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

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