Hi, my name’s Gav, I’m new to blogging for Enhance the UK and truth be told, my story is no different from a lot of other disabled people living in the UK. Well perhaps a little different but I think that’s just complicating things. I just happen to be bold enough to want to share my particular experiences with the interwebs, how delightfully scary.
On to the part where I introduce myself to you. This part does feel a little like an online dating profile to me (I was fortunate enough to meet my fiancée via a dating website, but this is getting decidedly off topic). That impression could just be in my head though. I like making people laugh, I love puppies and I’m a big nerd at heart. Sorry about that, I appear to have distracted myself with talk of dating sites, I do love puppies and I am a big nerd at heart. The nerd part owes a lot to my childhood and my complete lack of any sort of confidence or personal skills. Star Trek and computers were my friends, talking to girls intimidated me, much like nearly every other teenage boy from what I gather. “Gav – the teenage years” can be discussed more on a future day. Let’s just say it was a time of chronic acne, obesity and an ill fêted attempt to learn to play the drums for my music GCSE.
As soon as I was able to, I headed off to university in Bradford (Bratfurd to the locals with their delightful West Yorkshire accent). I have never really had a life plan, uni just seemed like the obvious step for me after school. I ended up studying media technology and production which really is a fancy way of saying having fun for three years. I did many a first during my time there, I kissed a girl (and I liked it), I found out what the little symbols on clothing labels mean, I tried drinking lager (wasn’t particularly to my taste). I was fortunate enough to make a lot of really cool memories from my time there, probably one or two not so good ones as well.
I ended up spending the following four years after I finished my degree in Bradford as well and it was during those years two of the biggest events in my life occurred, I was diagnosed with multiple sclerosis and I also got engaged to my girlfriend of five years. Unfortunately we got divorced after five years, I was experiencing depression during that time and I was not the easiest of people to live with because of it. That coupled with the fact we were still kids when we got together and had begun to develop different goals in life in addition to my being unemployed for three of the years we were married for.
Despite the fact I was diagnosed with multiple sclerosis over eight years ago when I was 23, my willingness to discuss it freely with other people and the Internet (check out my YouTube video where I discuss how it went down here https://youtu.be/PI5ij7_O05k), and my ability to joke about it, I still don’t know whether I have fully accepted it. This is not to say that I am unaware or accepting of the limitations my ms insists on imposing upon me or the adaptations I am required to make every day to continue functioning ‘normally’ but more an admission that emotionally perhaps I am still to accept my diagnosis.
I hope that you enjoyed my first blog for enable the uk, I hope to have many future posts for them where you will get the opportunity to know me a bit better 😊. If you have anything in particular you would like me to discuss please feel free to get in touch, until then, don’t fail to be awesome…
This is my first blog post in English, which is about my first trip to a foreign country without any member of my family. Wait! Actually, this was the longest duration I spent away from them – and I have experienced it only twice, yet! So, yes, two weeks ago, I was in Strasbourg, France for 8 days with my best friend, and it was amazing!
Let me start from the beginning.
I am from Turkey, and I have muscular dystrophy. In my case, this resulted in full-body muscle weakness. Therefore, I am a wheelchair user, and I need assistance for my daily routines. However, Turkey really sucks in disability support systems – which can be a topic of another loooong post, and that is why it was really hard for me to even imagine that I could have an independent life. Everyone is surprised when I say this, because I always seem very “grown up” while studying, working, meeting with my friends, engaging in romantic relationships, and overcoming barriers… but obviously, I was feeling like a “child”, and I was safe with my family (interesting to note here that although I was with my close friends having great fun, my first night away from my family ended up with a bad dream, which probably shows how I was threatened by this idea: My head was cut off from my body!), or that was what I believed for a very long time.
After all this time, I realize that my conceptualization of “safety” has changed a lot. At the beginning, I could feel safe only if I knew that someone would be there for me all the time no matter how they were busy, how they were feeling, or what they were thinking. I was expecting from people around me to be aware of my needs, and fulfill them even if I didn’t ask directly – and my world was full of similar unrealistic expectations. Then, I understood that this world of mine was doomed to make me feel unsafe because people had things to do, places to go, and their own lives to live (and yes, without ponies flying around rainbows ☺), which came along with the realization that I had my own life too, except that I wasn’t living it for the sake of being unrealistically safe. Also, I was missing out the possibility to discover myself, and the rest of the world!
I have to admit that change was not sudden. However, I believe that once the smallest idea appears in our minds, it grows little by little on a dark corner, and we don’t even know it until we are ready. Of course, this process gets faster sometimes, with the help of supportive others. At least, that is what happened to me with my decision to go to Strasbourg. I honestly don’t know where I’ve found the courage to apply for ENIL’s study session on sexuality, and to accept my best friend’s offer to go there together. During preparations, I was excited, happy, anxious, and stressful at the same time, and I was worried (and maybe secretly hoping – not a secret anymore, haha) that something would go wrong and we wouldn’t make there. However, on the night we had the flight, we checked ourselves in the airport, took some photos, and shared them on our social media accounts with this note: “Tonight is the night!”.
To be more precise, that night is the night where I’ve begun to grow up a little more. I’ve learned that things usually go better than I imagine with my anxious side, and I am stronger than I think in the face of obstacles. Mainly, this thought was the fuel for the rest of the week. Moreover, I’ve realized that I have many things to say, and many stories to tell (Thank you, if you are still reading ♥). I’ve also met wonderful people giving me support, courage, and inspiration to continue with my “independent” journey. I know that I have a long way to go, but I am not alone at all – which makes me feel safe, realistically safe! Now, I see clearer that I have to take risks, get challenged, and work hard to be a “grown up” and I don’t expect, or at least try not to expect, that things don’t go wrong because they do, and in a way you never imagine – but I also have the confidence and really strong relationships to get over them, knowing that these unexpected negative experiences are also parts of the whole.
It was really hard to conclude the week in Strasbourg, and similarly, it is hard to conclude this post. I just want to say that I’ve written it because I wanted to go through the most important journey of my life, to always remember how I felt before and after, and maybe to reach for others who have similar experiences. I also wanted to thank once more first to my best friend for giving me confidence that we could manage all, and for staying together in whatever we lived throughout this adventure; and second to the wonderful people I’ve met in Strasbourg for touching my life deeply. I will miss every second of this week – and I will close this file before I get too emotional.
We at Enhance the UK are delighted to announce our fundraising challenge Climb over the O2. Including 12 fabulous people who are all raising money to help promote our important and valuable work supporting young disabled people across the UK.
On 25th June 2016 we have a great group taking part in the climb challenge. It is eclectic mix of people many with an impairment, including Mary Russell who appeared on Channel 4 in The Undateables. Mary has dwarfism and for her this is a real physical challenge, but she wants to prove that having dwarfism or any disability should not stop you from fulfilling your personal goals. Her fundraising page is here:
Also Carley Owen is taking the challenge onto the next level of commitment. She’s putting all her supporters names in a hat, and the lucky one she picks will have their name tattooed alongside the Enhance logo on her derriere. Yes, she really is that committed and crazy!
Isabella is 13 and she’s taking part with her friend Gaya. Isabella has juvenile arthritis and uveitis and she wants to raise awareness of hidden disabilities and prove to herself that although she’s struggled with physical challenges she can overcome any hurdle with the help and support of her friends and family.
There are many more personal stories from everyone taking part, so if you’d like to know more then please get in touch by contacting Jennie at email@example.com or Gary at firstname.lastname@example.org or call 07930 289 162
Please promote our challenge and help us improve the lives of young disabled people across the UK.
Five Tips for Wheelie Great Travel
1. Never underestimate the power of planning…. Not all hotels on the Internet really are as wheelchair friendly as they say they are. Do your research and pick up the phone if necessary.
2.Knowing the local lingo always helps … even if it’s the odd ‘please’ and ‘thank you’, or being able to direct a taxi driver ‘left’ or ‘right’, this will make you friends, save you time and money!
3.Checking out transport is a priority …. There are many places that have accessible attraction and accommodations but appalling transport systems. Budget for private drivers or cabs if necessary!
4.Help is more available that you may think … When alone, trying to navigate strange roads, signs and attractions in my wheelchair, I’ve often been inundated with people offering to help me and show me around. Less accessible places can definitely create lasting friendships.
5.Make sure you’re aware of any perks that may come your way… Whether you’re going to a cinema or theme park, alone or with company, it’s very rare that concessions are not available wherever you are in the world. Make sure you use them!!
Exotic Freak, Incapable of participation in every day life and Un- sexual these terms define me, well at least according to my A – level media teacher.
I on the other hand would describe myself as an active wheelchair user turned activist who is the founder and co director of The Disability Campaign. Alongside this I am studying music, theatre and entertainment management at the number one arts university in the UK and manage and consult for international artists and millionaires.
But how is the rest of the world meant to see the strong, independent women I am if the mainstream media and even our education systems do not reflect the ability largest minority group in the world the incapable, un – sexual exotic freaks or to be politically correct and quite frankly a decent human being the 11 million people in the UK alone with a mental illness and or a physical or learning disability/difference.
And if we were to bring in the social model of disability which states ‘People with impairments are disabled by the fact that they are excluded from … mainstream of society as a result of physical, organisational and attitudinal barriers’ then we are basically talking about the entire human race. The entire human race that are being brainwashed into thinking perfection exists when the truth is we all have different interests, preferences and abilities that make us who we are.
Think about it, when was the last time you felt represented in a piece of media ? Since I am probably the least sporty person on the planet Paralympians are off limits and so my next reference point in The Undatables on channel 4 and I most definitely am not undatable.
This brings me to the title of this piece ‘roll models’ and yes this play on words might seem like it only applies to wheelchair users like myself but if we apply it the broader context I want to use my
weekly column within Liability magazine to provide a platform for the real role or ‘roll’ models of the world.
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.
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.