Monthly Archives

May 2016

My story

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Here I am, 20 years old laying on my bed, with the blankets and my medical pillow comforting me. Heavy painkillers at the table next to me, and my walker waiting for me to get up. I’m staring at my laptop screen hoping that I read it wrong, that it was a mistake.

Eleven years old, ginger hair, freckles, braces and being insecure made me the ultimate doormat
of middle school. When the call for getting vaccinated for cervical cancer came the girls in my class weren’t excited at all.

I remember them shouting “It’s not being studied enough”, “only dumb girls go to get vaccinated”.
As always I muted the sound of their commanding voices and went home. My mom explained to me what cervical cancer means and we decided together that I would get the vaccination.

A big building, often used for several events where people go to for fun and to spend their money was turned into a clinic for thousands of young girls. Inside there were rows and rows with fences and at the end of every row stood a small table, with a nurse in blue ready to vaccinate girl after girl at a high tempo. There I stood at the back of the line, holding my father’s hand while girls were passing out and others heavily cried.

“Go sit down and be brave, it’ll be over before you know it” my dad said in his loveliest voice.
I sat down on the chair, looked at all the hundreds of girls still waiting in line.
I closed my eyes and didn’t move a muscle.

After that we went home, just like the other two times. After the second time getting vaccinated, I felt how my body started to change. I was more tired, my muscles weakened and I experienced pain on a daily basis. It was very difficult for me to get out of bed and go to school.
We blamed it on the weather, my period and stress. There was never a doubt in our mind that we made the wrong decision.

Today my mom sent me an article about thousands of girls who were vaccinated with the HPV vaccine, the Human Papilloma Virus vaccine.

In England alone, 8228 girls experienced side effects due to the HPV vaccine and only 2587 were seen as serious.

In reality there are many more cases, just like mine who didn’t blamed it on the vaccine and just moved on while thinking that their bodies failed.

In the article there’s a reference to dr. Manuel Martinez- Lavin, who specializes in chronic pain treatment. He wrote that doctors should be aware of the possibility that the HPV vaccine and illnesses such as POTS or Fibromyalgia could be related.

Fibromyalgia, the illness I was diagnosed with last year, the illness that changed my life.

After the vaccinations my health seem to worsen. I used to love to play outside, go to school, ride my bike and just being young. I had to stop my education and my hobbies. Time passed by and I couldn’t even do the things I love and was slowly losing my independence. Now here we are. There are days I’m bedbound to the pain and the fatigue, unable to get up on my own. Due to the health care system in the Netherlands my girlfriend is forced to be my caretaker.

In a couple of months I’ll get my wheelchair and I’ll be able to do the things I love again.

Please share my story.

I know there are a lot more girls out there who are suffering similar side-effects as mine due to the vaccine and I hope that this article will shine a light on the situation.
Hopefully together we’ll be able to find answers and justice for us all.

What to do when you’ve been refused access into a place providing a service for having an assistance or Guide dog

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What to do when you’ve been refused access into a place providing a service (e.g. hotel, restaurant, bar or supermarket) for having an assistance or Guide dog

The Equality Act 2010 is quite clear with regards to a service provider providing
‘Reasonable adjustment’ for anyone with a disability to access their premises and have the same experience as any other consumer. In our experience at Enhance the UK we find that people with assistance dogs unfortunately do often get access refusals. The company are breaking the law and this guide is an outline for the steps you could take.

So what do you do if you feel you’ve been discriminated against by a service provider not making these reasonable adjustments and allowing you and your assistance dog the same access rights as any consumer?

  • In the first instance it’s important to get the name of the manager and any members of staff involved in this access refusal, so either call up and get the details afterwards or get someone else to go help getting the information for you.
  • Once you have these details you then have two choices on how to take this further, and it depends on the severity of the discrimination and also your own feelings on what recourse you want from the service provider.
  • Firstly you can try to contact the manager directly either by phone, email or a personal visit. You should prepare to explain how you felt discriminated and what you think the organisation should have done. In most cases the manager will take this seriously and give you a satisfactory conclusion.
  • If you feel that you want to take this further, or having contacted them first they have shown no interest in taking steps to improve their access and services for you then you need to write a letter directly to the company. A handy template can be found on the Equality Advisory Service website: Template letter
  • In this letter you should make it very clear how you were discriminated and refused access, and how you felt. You should also suggest steps they could take to ensure this doesn’t happen again e.g. staff training on assistance dogs, ensuring an assistance dogs sticker is prominently displayed etc.
  • It is important to print out and post the letter (you can send an email as well) as you can send this via the post office to ensure it is signed for and received.
  • You give the company 28 days to reply to your letter. If it is a large organisation and you know they have a social media presence, then you can also spread the word via their facebook or twitter profiles. It’s important not to be seen to slander the company, but you should feel comfortable contacting them through these channels. Social media is very powerful and you may find that you get a quicker response this way.
  • Hopefully you will receive a positive response from the organisation after this time and you feel that they have taken your complaint seriously and taken steps to address this personally, and ensure it doesn’t happen again.
  • If you feel that your case is serious enough and you have not had any positive response from the organisation, then you should think about seeking legal advice. You can get free advice on what steps to take from the Equality Advisory Service. You could also seek advice from your local Citizen Advice Bureau or the Equality and Human Rights Commission who could take direct steps on your behalf. Finally you could look to contact a private law firm who specialise in discrimination cases, there are many that work on a no fee no pay basis. The important thing to remember is that you’re not on your own, and there is plenty of free help and advice around to support you.
  • Hopefully having taken these steps you have now given yourself the confidence to ensure that if you are ever refused access in the future, or receive discrimination from a service provider you now have the steps to take to ensure your complaint is taken seriously.

Further information can be found here:
Equality Advisory Service
https://www.equalityadvisoryservice.com/app/help

Citizens Advice Bureau:
https://www.citizensadvice.org.uk/about-us/how-we-provide-advice/advice/

Equality and Human Rights Commission:
https://www.equalityhumanrights.com/en/our-legal-action/our-powers

An essential guide for businesses on assistance dogs:
https://www.strath.ac.uk/media/ps/sees/equality/EHRC_assistance_dogs_guide_June_2013.pdf

Ley Riders – Holly’s Novel

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Holly Williams
This page is dedicated to my latest novel ‘Ley Ryders’; an exciting new fantasy adventure. It tells the tale of Petronia, the mute daughter of a simple blacksmith who feels she is destined to become a Ley Ryder; a sacred band of women who devote their lives to aiding others through the healing power of crystals and follow the guiding  influence of the  mystical force known as the Ley.
Petronia’s brother Hayden however is suspicious of the Ryders motives and fearfully protective of his sister. Together, the siblings venture out with the Ryders to discover the truth of Petronia’s uncanny talents in sensing the Ley, but are these  abilities signs of glorious wonder or omens of evil?
On their journey, Hayden and Petronia will encounter many wouderous sights and perillous challenges. Follow them as they confront ancient magic, strange and deadly mechanical creatures, noble Dwarves, and lame but couragous princes as they seek out Petronia’s true voice!
News
15/5/16
Ley Ryders is currently being proof read by Matador Publishing so I hope to be able to start checking it through sometime over the summer. The very kind and talented artists at Dynamo Design have already started work on my front cover and I’m thrilled with how things are shaping up. Take a look for yourself.

‘My name is Naomi’

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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.

Meet Naomi

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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.

Hidden Disability Clarity in The Big Smoke

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Sallie Humphreys

I’m sure you’ve gathered now from reading my previous blogs that the majority or my ‘positive’ disability-related experiences only occur after a stream of ‘negative’ occurrences. This may sound pessimistic but it’s the truth.

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However, following a weekend visit to London with my family, I received numerous positive responses to my disability, so this blog is a pretty happy one!

I always get a little bit anxious on the train when the ticket checks are going on, mainly because it requires me to present my Disabled Railcard. I do have a system though, and this involved passing the railcard over using my left hand so that the staff member checking the tickets can see that I obviously have a condition affecting my arms. Anyone who knows me well will realise that this is very out of character; I rely on my right arm (Big Arm) for virtually everything I do, and give my left arm limited responsibility, as he’s so weak and awkward! This normally seems to do the trick though, and I’ve never been questioned. However, on Friday we were in the middle of a horrific train journey – including the train having broken down for AGES before we managed to even get out of Staffordshire. As you can imagine, my back was killing and I was having ridiculous spasms down my left side, and I just felt pretty rubbish. I felt so horrendous that I didn’t even bother with my whole routine of using Little Arm to pass over my railcard, I didn’t think I should have to physically prove my disability whilst feeling so terrible. I was mega surprised when the guy doing the ticket checking just accepted it, no questions or weird looks – but, I guess I shouldn’t be that shocked, considering that everyone with a Disabled Railcard has had to send various pieces of paperwork off for consideration before a railcard is granted necessary.

The next day, my family decided they wanted to visit Kew Gardens. It was an amazingly sunny day so I was happy to be outside topping up my tan. I saw online that they do disabled tickets with the free carer ticket so, naturally I knew I should be entitled to this – I also had my disability benefits letter with me, so I was prepared for questions. However, after checking the letter I had in my bag, I realised it showed my entitlement to ESA (Employment and Support Allowance) rather than PIP (Personal Independence Payment). I got pretty stressed out, thinking that without solid, black and white proof my disability wouldn’t be acknowledged – especially because I do not require use of a wheelchair. However, I asked for the disabled ticket along with the free of charge carer ticket for my sister, and the assistant just processed it, no questions asked AT ALL. I was stunned, and got a little bit of a buzz for having my condition acknowledged just like that – my scars were hidden and I wasn’t even wearing my splints!

That same night we were going to the theatre to see a musical for my mum’s belated birthday present – I’d booked tickets months ago, and the box office generously provided half price, accessible tickets for my mum, dad, sister and myself (I swear it’s normally the accessible rate just for one guest?!) so that was already one massive positive. After our trip to Kew Gardens (combined with the rubbish train journey the day before) my back was pretty damn terrible. I’d had a lie down and taken a load of painkillers, but nothing was easing it – my upper back pain had spread into my chest, which made breathing and moving insanely painful, and my lower back felt like it had been kicked inwards, causing stomach pain too. I’d specifically taken a new black and white dress to wear, but my pain was so severe I couldn’t even wear it, so my mum helped me change into a loose-fitting dress. I felt so unwell that I could hardly eat, and sat at the restaurant picking miserably at a salad, when all I really wanted to do was go to bed or see my chiropractor urgently! Anyway, I took some more painkillers, did a few gentle back exercises and forced myself to go – I couldn’t have missed my mum’s birthday treat, and I’d specifically booked disabled tickets, so it would look a bit suspicious if the disabled person in question just hadn’t turned up!

The theatre experience was such a positive one in terms of disability awareness, that it really helped me to enjoy the evening. Luckily, my painkillers had started to kick in, and a glass of wine really helped to relax my dodgy joints and muscles. I was just scoffing some Maltesers (the salad was crap, after all) when a mega friendly employee from the theatre came over to find me, as he knew I’d booked accessible tickets. He informed me of the help they provide and that I was able to use the disabled toilets to save me from queuing for the other toilets. He was literally so friendly and again, no questions were asked – he just respected that I had booked accessible tickets, so obviously I have a disability, even if it isn’t that visibly obvious. What an ace service.

Obviously, I was still in pain and found the weekend really exhausting – but just to have members of the public be so accepting and understanding helps more than you can imagine. I appreciate it must be difficult for them though – how do they know that someone is genuinely disabled, or whether they’re the minority that pretend to have a disability so that they can scam the system? My sister and I came up with an idea that everyone in receipt of DLA or PIP should be registered on an online system and provided with a code which could be used when booking disabled or accessible tickets. This would ensure that no-one has to be expected to disclose details of their condition, because a code would be used to confirm their eligibility for disabled tickets. It’s also much more straightforward and ensures that the right people are receiving such tickets. Is there such a thing?!

 

I’m off to London again tomorrow for hospital treatment, let’s hope it’s all just as positive!

In Response To Mr. X or What You (Apparently) Can’t Say If You’re Disabled

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Holly Williams

mik-scarlet

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.

Blue Badge Blues

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Sallie Humphreys

Blue-badge-sign

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.

 

 

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