Today Disability History Month will officially start in the UK. Events began last Monday here at UEA and during the week I've been reflecting on what it means to be disabled. There have been a number of opportunities this week for me to discuss disability with my disabled and non-disabled friends and it made me realise that, even within the disabled community I have been lucky enough to become part of, we often don't talk about what it means to be disabled or many of our experiences. This is because many of this is deeply personal, however the only way to break the stigma that surrounds disability is to talk about it. I don't want anyone to feel like they have to, but personally I feel comfortable enough to do so. So here is my post on my disabled life:
Disability. It's seen as taboo by many. Even for me while I was growing up. I grew up with the most amazing parents. They were very open, acknowledged what I would never be able to do and then focussed on what I could. I'm one of the lucky one's - I spent my childhood being encouraged to take an academic interest in things and being informed constantly that "independence is the aim of the game". But it was still tough.
When I was around 9 we had an assembly at school on the local hospice. I had been going to a different hospice for a couple of years not understanding much more than that it was this amazing fun place. During the assembly a teacher made a comment that hospices were a place people could go when they were dying. That was how I found out I was dying. That the SMA inside of me was slowly killing me.
I have SMA - or Spinal Muscular Atrophy Type II to be exact. The slightly more severe form of this is the number 1 genetic killer of children under 3. It's caused by a problem with the same gene that causes MND and is very similar. I was diagnosed when I was 18 months old, have never walked, had spinal surgery at the age of 9/10 and will continue to grow weaker until I can't breath or swallow and die. I remember my Mum getting up in church and saying how great it was that I had made it to be 12 because they weren't sure I would and that's when I realised how lucky I was.
I'm lucky I survived - that I had the strength to fight my condition. I'm lucky I had a family who encouraged me to enjoy life. I'm lucky I met Charlotte Lowry at the age of 8 and got to go to her birthday party - the first freaking time I'd been in the house of someone who wasn't family.
Disability sucks. It's as frightening and lonely as it's often seen to be. I've had to fight an ableist society my whole life and so have my parents. They had to fight for me to be able to go to a mainstream school, they had to put up with the ass-hats that had the cheek to say to them that I was disabled because they didn't pray hard enough and they had to fund raise for every wheelchair I ever had until a year ago because until then the NHS wouldn't provide what I needed.
Disability sucks because the whole world is against you. People would rather have an aesthetically pleasing building than one I can get in. I can't even go upstairs at my own university! Sometimes you just want to give up.
But then there's that moment of clarity. Most of the time (like 98%) disability sucks, but every now and then it's the most amazing thing in the world. There's a moment where you're sat in a room with a bunch of the most brilliant people ever and you know that you would never have met them if you hadn't had your disability. There's a moment where you realise just how strong you've become, all because of your disability. There's a moment where things don't suck, and it makes the horrendous struggles you've been through completely worth.
This week someone asked me if I could, would I go back and live my life without my disability. And the answer is, unsurprisingly, no. My disability is part of who I am, it's an essential part of what makes me me and I wouldn't change it for the world. I'm proud of who I am, disability included. Now all I want to do is make sure people like me experience their disabilities and that it won't suck. That they won't have to fight to be educated and enjoy life like I did. Because disability is beautiful, and people should know that.
All I want is for a disabled kid like me not to have to wait until they're 8 for someone to care enough to sort out a ramp and invite them over. Kids like me shouldn't feel like the only place they can be open and honest about their disability is somewhere like Francis House (the hospice I go to). Disability should be something we celebrate and that's why I support Disability History Month.
For the longest time I felt like I had to hide my disability. The only place I didn't feel like I was going to be judged for my disability was Francis House, everywhere else I felt embarrassed by it. I refused to go to any group that was specifically for disabled people until I came to university because I didn't want to be seen as disabled. But then I came to university and met people at Chronic and I felt proud! This was a group of people who were strong together and it made me stronger too. I finally managed to come to terms with everything my disability encompassed. I'm proud of who I am, just like every disabled person deserves to feel.
I always encourage people to ask about my disability, so if you have any questions please ask me. I won't be offended and will be very honest in my answers.
Sunday 22 November 2015
Tuesday 10 November 2015
To Boldly Go Where Everyone Else Has Gone Before
Last week we celebrated the 20 year anniversary of the birth of the Disability Discrimination Act and I've been reflecting on my own recent struggles with access. In the 20 years since the DDA was passed much has changed but not as much as you would expect. Disabled people across the country still struggle with the inaccessibility of society - from the lack of acceptance and understanding of mental illness to the new builds surrounded by steps - and I'm just going to talk about one of my more recent experiences.
As you're probably aware from my profile, I study at the University of East Anglia. Lately I have been having trouble accessing important services such as the Union's office and the bookable rooms for societies. If I was a postgraduate student or an alumni member I would also be unable to access the postgrad centre and bar. This is a huge problem that is very complicated and sometimes even I sit here and think "there's a lift so why can't I just go upstairs" so I'm going to try and summarise this as simply as possible.
As a wheelchair user I have to use a lift to go upstairs in buildings. The building that houses the above services has a lift but it is not a fire safe lift and therefore can't be used in the event of a fire, so if there is a fire there is no way to get me out of the building if I'm upstairs. It is usually assumed that wheelchair users can be transferred to an evacuation chair but for some people who don't have the strength and can't transfer themselves and are fragile, like me, this isn't really an option. Because they can't get me out in a fire, the university legally can't allow me to go upstairs in any building as there are no fire safe lifts.
My situation is due to be resolved within the next few months with the fitting of a stair climber that can carry both myself and my wheelchair down the stairs in an emergency. However, this stair climber may not work for all types of wheelchair, so another student may be in my position in a few years time. When speaking to someone who is working with the university to make the campus more accessible they told me that if they fit a fire safe lift they won't be able to fit the lift they're currently working on because they just don't have the funding. Millions of pounds has been poured into renovating the campus yet so little of that has been put towards making UEA more accessible that we can't afford more than one lift!
UEA have complied with the law with the accessibility of the campus but it is still not enough. Legally they don't have to fit anything else to allow students like me to access important facilities but wouldn't most people expect a university to be more forward thinking and enlightened? At least enough not to require encouragement legally?
As someone who is heavily involved with the student union and who is going through a particularly rough time at the moment (see my earlier post), the added stress of having to deal with this situation has made my time at UEA unnecessarily difficult. I am in my second year of my degree and only have around a year and a half left here. For 4 months of me being unable to access such vital services is a huge chunk of my academic career. The likelihood of convincing the university to pay for both lifts before I leave is slim but one can dream.
All I am asking is that students like me are allowed to boldly go where everyone else has gone before. It's 2015 - 20 years since the Disability Discrimination Act was passed and yet the fight is still not won. Why are these things still happening? It's 2015, and I still can't go upstairs in my own university.
As you're probably aware from my profile, I study at the University of East Anglia. Lately I have been having trouble accessing important services such as the Union's office and the bookable rooms for societies. If I was a postgraduate student or an alumni member I would also be unable to access the postgrad centre and bar. This is a huge problem that is very complicated and sometimes even I sit here and think "there's a lift so why can't I just go upstairs" so I'm going to try and summarise this as simply as possible.
As a wheelchair user I have to use a lift to go upstairs in buildings. The building that houses the above services has a lift but it is not a fire safe lift and therefore can't be used in the event of a fire, so if there is a fire there is no way to get me out of the building if I'm upstairs. It is usually assumed that wheelchair users can be transferred to an evacuation chair but for some people who don't have the strength and can't transfer themselves and are fragile, like me, this isn't really an option. Because they can't get me out in a fire, the university legally can't allow me to go upstairs in any building as there are no fire safe lifts.
My situation is due to be resolved within the next few months with the fitting of a stair climber that can carry both myself and my wheelchair down the stairs in an emergency. However, this stair climber may not work for all types of wheelchair, so another student may be in my position in a few years time. When speaking to someone who is working with the university to make the campus more accessible they told me that if they fit a fire safe lift they won't be able to fit the lift they're currently working on because they just don't have the funding. Millions of pounds has been poured into renovating the campus yet so little of that has been put towards making UEA more accessible that we can't afford more than one lift!
UEA have complied with the law with the accessibility of the campus but it is still not enough. Legally they don't have to fit anything else to allow students like me to access important facilities but wouldn't most people expect a university to be more forward thinking and enlightened? At least enough not to require encouragement legally?
As someone who is heavily involved with the student union and who is going through a particularly rough time at the moment (see my earlier post), the added stress of having to deal with this situation has made my time at UEA unnecessarily difficult. I am in my second year of my degree and only have around a year and a half left here. For 4 months of me being unable to access such vital services is a huge chunk of my academic career. The likelihood of convincing the university to pay for both lifts before I leave is slim but one can dream.
All I am asking is that students like me are allowed to boldly go where everyone else has gone before. It's 2015 - 20 years since the Disability Discrimination Act was passed and yet the fight is still not won. Why are these things still happening? It's 2015, and I still can't go upstairs in my own university.
Sunday 1 November 2015
Strawberries
So this is my first post as a blogger for years and it's not what I had planned. I had planned to write about accessibility at my university - it would have been moving, funny and hopefully would have gotten me a load of followers. However, after having some heartbreaking news on Saturday 24th October I have decided that I want to dedicate my first post to a dear friend that I unfortunately must say goodbye to.
Many people have heard of the story of Kirsty Howard. Kirsty was an inspiration to many, raising £7.5million for Francis House Children's Hospice during her lifetime. She battled against all odds to live to be 20 when she was given just weeks to live at the age of 3. The nation is grieving the loss of one of the most inspirational people to ever live after she passed away in the early hours of Saturday 24th October.
But those who knew her personally treasured her for different reasons. I have been contemplating how to put why I loved Kirsty so much into words since hearing the news early on Saturday morning, and I still doubt that I will ever achieve the task of making you understand. But I'm going to attempt it.
There are quite a few stories I could tell you. I could tell you about the time we ordered a dodgy Chinese and ended up with food poisoning the night before her prom. I could tell you about the time we sat up late in her room with our friend talking about boys and silly things like that. I could even tell you about the time that we sat with our younger friend while she told us how scared she was about her future and how she thought she would never be able to have a normal adolescence. Kirsty sat there and listened while this young teenager cried for the life she would never have and then she told this girl that it was going to be okay, that she was amazing and beautiful and that she would find a boyfriend to love her and she should just enjoy herself no matter what because you can't see the future.
But I'm not going to. Instead I'm going to tell you why I call her Strawberries. It's going to sound dumb, most likely, but it feels important.
When I go to Francis Lodge (the adolescent and adult section of Francis House) I like to eat all the things I normally wouldn't. It's my chance to relax and stop putting on this "strong" persona that I often feel I have to wear everywhere else. One of my favourite things to eat while there is strawberries dipped in chocolate (the staff really pamper me). Not long into my friendship with Kirsty I was sat in the lounge at Francis Lodge stuffing my face with strawberries and chocolate when she parks her wheelchair next to me and half shouts "are those strawberries real?!". Being the sarcastic person I am I replied "no. They're plastic." and she replied "Alright! No need to be sarcastic, Plastic!" I of course retaliated with "shut up, Strawberries" and stuck out my tongue like a 5 year old. The nicknames stuck and years later her number is still in my phone under the name Strawberries.
Strawberries will always be important to me and I don't believe there's a chance of anyone forgetting her. She changed us all in little ways. For me she changed the way I saw the whole world. She convinced me that I didn't have to take my tea the wrong way, even though someone else was making it (which may sound very insignificant in the grand scheme of things but when you can't do anything for yourself it means a lot). She convinced me that it is possible to change the world, even if you're a seriously ill teenage girl. Before meeting Kirsty I was losing hope - I truly believed that my life would be too short to make anything of - but she showed me that anything is possibly.
Losing Kirsty hit many of her friends hard. Many of us relied on her for emotional support, advice and inspiration. Whenever any of us were low or lost she would help us find our feet. Kirsty truly was the best of us all and I have no idea how we are going to live without her.
It also has reminded many of us how ill we could be. We often ignore the fact that we are ill and we could go at any point. It's hard to explain to people who don't understand and being so far from home has meant I haven't felt like I have anyone to lean on. Usually I would text Kirsty. She was an essential part of our circle of friends and nothing will ever be the same for us again.
I would like to take this opportunity to send my love and condolences to Kirsty's family, who she loved immensely and who loved her equally. We will not forget her.
Many people have heard of the story of Kirsty Howard. Kirsty was an inspiration to many, raising £7.5million for Francis House Children's Hospice during her lifetime. She battled against all odds to live to be 20 when she was given just weeks to live at the age of 3. The nation is grieving the loss of one of the most inspirational people to ever live after she passed away in the early hours of Saturday 24th October.
But those who knew her personally treasured her for different reasons. I have been contemplating how to put why I loved Kirsty so much into words since hearing the news early on Saturday morning, and I still doubt that I will ever achieve the task of making you understand. But I'm going to attempt it.
There are quite a few stories I could tell you. I could tell you about the time we ordered a dodgy Chinese and ended up with food poisoning the night before her prom. I could tell you about the time we sat up late in her room with our friend talking about boys and silly things like that. I could even tell you about the time that we sat with our younger friend while she told us how scared she was about her future and how she thought she would never be able to have a normal adolescence. Kirsty sat there and listened while this young teenager cried for the life she would never have and then she told this girl that it was going to be okay, that she was amazing and beautiful and that she would find a boyfriend to love her and she should just enjoy herself no matter what because you can't see the future.
But I'm not going to. Instead I'm going to tell you why I call her Strawberries. It's going to sound dumb, most likely, but it feels important.
When I go to Francis Lodge (the adolescent and adult section of Francis House) I like to eat all the things I normally wouldn't. It's my chance to relax and stop putting on this "strong" persona that I often feel I have to wear everywhere else. One of my favourite things to eat while there is strawberries dipped in chocolate (the staff really pamper me). Not long into my friendship with Kirsty I was sat in the lounge at Francis Lodge stuffing my face with strawberries and chocolate when she parks her wheelchair next to me and half shouts "are those strawberries real?!". Being the sarcastic person I am I replied "no. They're plastic." and she replied "Alright! No need to be sarcastic, Plastic!" I of course retaliated with "shut up, Strawberries" and stuck out my tongue like a 5 year old. The nicknames stuck and years later her number is still in my phone under the name Strawberries.
Strawberries will always be important to me and I don't believe there's a chance of anyone forgetting her. She changed us all in little ways. For me she changed the way I saw the whole world. She convinced me that I didn't have to take my tea the wrong way, even though someone else was making it (which may sound very insignificant in the grand scheme of things but when you can't do anything for yourself it means a lot). She convinced me that it is possible to change the world, even if you're a seriously ill teenage girl. Before meeting Kirsty I was losing hope - I truly believed that my life would be too short to make anything of - but she showed me that anything is possibly.
Losing Kirsty hit many of her friends hard. Many of us relied on her for emotional support, advice and inspiration. Whenever any of us were low or lost she would help us find our feet. Kirsty truly was the best of us all and I have no idea how we are going to live without her.
It also has reminded many of us how ill we could be. We often ignore the fact that we are ill and we could go at any point. It's hard to explain to people who don't understand and being so far from home has meant I haven't felt like I have anyone to lean on. Usually I would text Kirsty. She was an essential part of our circle of friends and nothing will ever be the same for us again.
I would like to take this opportunity to send my love and condolences to Kirsty's family, who she loved immensely and who loved her equally. We will not forget her.
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