An Update

Hi Everyone,

I’m very sorry it’s been so long since I’ve posted, life has been super busy recently (though I do realise that’s no excuse)!

A few things to update you on:

  1. Last month, we were invited to The Student Wordsmith Awards Night at Loughborough University. It was a great night with lots of wonderful guest speakers showcasing their poetry. The winner of our poem was also crowned. Congratulations, Lizzie! I shall upload her winning poem in due course.

2. I went to Naidex show at the end of April at the NEC in Birmingham. It’s about the 6th time I’ve been now and I love it! There are always great speakers sharing their stories (this year it was Martyn Sibley on the day I attended). He’s co-founded Disability Horizons, for disabled people to share their experiences of access when travelling. Go check it out! You may even see me writing a piece for their site in the near future!

I also had a go on a seated Segway, which was very cool. If I’m feeling brave later, I might tweet a picture. Oh, and I was lucky enough to meet GB Boccia star, Nigel Murray, and learn some tips about how to play.

Let me know if any of you have any of you have been to Naidex and what you think of it. We want to hear all about your experiences!

3. Finally, I know we’re supposed to be sharing positive stories, but we’re also about raising awareness. With that in mind, Tanni Grey-Thompson has decided to use #inaccessible when she’s out-and-about and finds a disabled toilet that she can’t get into/ has been used to store things/ is generally not fit to use. I thought we could join in with this, I’m sure  we’ve all had those experiences. Let me know in the comments or use the hashtag on Twitter. That would be great.

I also thought we could tweet about it if we’ve found disabled toilets that are particularly helpful. For instance, my local M&S now has two disabled toilets next to each other: one for left-hand transfer & one for right-hand transfer. The doors are labelled accordingly, how great is that?! I shall RT the picture later, go check out @Head_overwheels on Twitter (if you haven’t already).

Do let is know your positive access stories as well as not-so positive ones. It’s always good to share the positives too 🙂

Hope you’re all well. I should be more available on here over the summer as work calms down a bit.  We also have the Paralympics in Rio to look forward to, YAY! 😊

Louise

 

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Hannah-Rebecca’s Story

Hi everyone,

Apologies for being so absent recently. The joys of working AND studying means this blog had to take a backseat for a while. I hope to be around more regularly from now on.

Today Hannah-Rebecca shares her story and talks about her disability education project: Considering Disability.  She’s a businesswoman and I can certainly learn a thing or two from her. I hope you enjoy reading.

Good afternoon. They call me the Queen of Awesome. I’m joking, they don’t… often. My name is Hannah-Rebecca and I’m a disability consultant. I do lots of other things too but the consultancy is where my heart lies because it allows me to tackle disability discrimination on my own terms. In May 2014 I founded a disability studies journal, called the Considering Disability Journal. I started it after reflecting on my life experiences and coming to terms with my disability identity. I have hereditary multiple exotoses. It’s a rare medical condition, but not rare enough for me to dally about being a sensitive violet (as I would so love to do). It’s a genetic condition in which the bones at my joints and around my skeleton turn outwards and cause all manner of problems. Someone once explained it to me like NF2 for bones – only accurate in very basic laymans terms. It presents differently in people and it is luck of the draw how you end of affected. I’m part of a support group on Facebook, and some people in that group talk about having thirty plus surgeries before they get out of their teens whereas I have only ever had one. I consider it an acquired impairment as it didn’t affect me until I was about thirteen – it had visibly presented since but caused me no pain whatsoever. When I hit puberty, my skeleton thought it was go time and proceeded to cause my endless difficulties – specifically mobility impairment. You can read more about this on my blog, but as I was growing up I had my classmates accuse me of faking my disability, my teachers not believing me and doing nothing to stop my classmates.

I thought about all the microaggressions I experienced; before the term was coined, before I had the vocabulary to articulate what had happened to me. As the osteochrondomas (bony growths) on my knees grew bigger my mobility was restricted, I could use them less. Suddenly, getting from the ground floor to the upper third floor for my Religious Studies class was an impossibility. From the ground floor up two huge flights of stairs for design technology – not happening. What about to the art block? Not a chance. As my impairment began to affect my life more and more, my world shrunk. I stopped being able-bodied, but didn’t yet know I was disabled. I still needed the accommodations that disability makes you need. The lift in our school was vintage – everything short of a cage and an attendant. To operate it, you needed a coveted key. The process of getting one of those wasn’t too bad, but retaining it when the early steps to discrimination started. How on earth does a thirteen year old explain to these adults that, no, this wasn’t a temporary need. No, I can’t tell you when I’ll be returning the key as I don’t magically expect my legs to start working next week. Not happy with my answer? Well threatening to take it back means I can’t get to my classes, which means more trouble for me – I presume you’ll be punishing me for not attending?

I didn’t really fit what they expected of me. I remember them being especially irritated that I let my friends travel in the lift with me on the way to class. An important part of school life is the social time between classes – was I supposed to miss out on this because I needed to use the lift? Did you want me to be contrite and alone in my difference, and isolate myself? Travel to class alone wearing a red ‘d’ on my chest because I couldn’t walk upstairs? No thank you. You’ve just read this whole anecdote and by now, you’re wondering – why is this relevant? What has this got to do with you starting Considering Disability? It’s relevant because of this: the UN Convention on the Rights of Persons with Disabilities. The international treaty which indicates how state parties should behave when protecting the rights of disabled people – article 1 outlines my right to full and equal enjoyment of human rights and fundamental freedoms. Article 3 tells me that I have a right to full and effective participation in society. Article 7 tells me that at that time, I was entitled to enjoy my rights on an equal basis with other [non-disabled] children. Article 24 tells me that there is a goal for my full inclusion in education and my social development. These are just some of the rights outlined in the UNCRPD, the Convention on the Rights of the Child gives me more and the reason this is relevant is because our government signed up to this. Our government made a commitment to fulfil their obligations and protect my rights. But rights aren’t always enforced by corporate entities, some ‘every child matters’ logo wouldn’t protect me from discrimination. People are the key to preventing discrimination and protecting my rights then as a disabled child, and my rights now as an awesome disabled female. You may think the example I’ve given is quite minor, probably doesn’t have enough gravitas to illustrate the point – I was told to keep it light. There are many more serious incidents that I can recount to you about discrimination that I experienced before I even got out of compulsory education. But, I shouldn’t have to go through something serious for you to take my rights seriously. I shouldn’t have to give you a heartwrenching story for you to take action. It should be something you should just do anyway.

I’m not unreasonable. I know it’s hard to expect people do be anti-disability discrimination if they don’t know what it is. It’s hard to protect rights if you don’t know what they are. It’s hard to meet your obligations towards disabled people like myself if you don’t understand why they’re important and why it isn’t just a tickbox exercise. Fundamentally, it comes down to education. That’s why I built Considering Disability. It’s been hard work, and we’ve still got a long way to go but we exist to take the theory of disability and the disability studies knowledge outside the realm of academia and put it in the hands of the people you encounter daily, the people who – when it comes down to it – are responsible for whether or not you experience discrimination. The people who have the potential to enact or prevent; the type of people awareness campaigns are aimed at. Education around disability is so important and yet so absent. Did you teach me in biology about anything other than a biotypical skeleton? Did you teach me in citizenship about disability? No. One in four people in the UK are disabled but I can tell you about every type of drug they taught us about in the event I might accidentally sniff one and become hooked for life. Most people will acquire an impairment throughout their life and attribute it to old age. Disability rights matters then too – people need to understand disability because if they aren’t disabled, the chances are they’ll know someone or interact with someone who is. Considering Disability is about bringing those conversations to the forefront, and promoting disability education for all.

Hannah-Rebecca Joy Guscoth

Website: https://medium.com/@MissGuscoth

We look forward to hearing your thoughts. Like and share with friends. Thanks 🙂

 

Pros and Cons

Hi Everyone,

Only me again, I’m afraid. Hope you’re all doing well.

So, I was using a pretty unsuitable disabled toilet the other day and thought “I must blog about this, I want to know the annoyances other wheelchair users have”.

Basically, I’ve been in ‘accessible’ toilets that I can’t even shut the door of if I’m in my electric wheelchair and have a rucksack on the back (which I often do if I’m going away for the weekend). Then there are the toilets where I can’t reach the toilet paper…Who designs these?! Do they consult a wheelchair user to do a test run and make alterations as necessary (i.e. put the toilet paper holder somewhere easy to reach or make sure there’s enough room for an electric wheelchair)? I doubt it. Maybe I should contact someone who builds disabled toilets to try and find out. That’s one to add to the ‘to-do list’.

Then, I thought: “the point of your blog is positivity and saying being a wheelchair user isn’t all bad. You can’t write a blog where you spend the whole piece complaining”. I’ve therefore decided to highlight some positive experiences I’ve had (that are likely to have only occurred because of my chair) as well as the bad.

One positive occurred to me as I was experiencing it. I was travelling to Bristol for work last week and I got to my connecting train in Birmingham and there was another wheelchair user waiting to get on the same train. I was helped onto the first class carriage for no extra charge (because two wheelchairs couldn’t fit in standard). I therefore enjoyed free coffee, cake, biscuits and crisps on my journey. The First Class host was also lovely and we chatted about the importance of reducing stigma around Mental Health Issues (and you know my passion about that…it was a good day).

Gigs

My close friends and family will tell you that my favourite thing to do in my spare time is to go to gigs. I’ve been to so, so many. One of the reasons is because usually, I effectively get 241 tickets because the person who goes with me is my carer (I prefer the term ‘assistant’). I couldn’t afford to go to as many gigs if I have to buy two tickets at full price. So that’s probably my favourite pro of having wheels. However, you can only get 241 tickets if you are sat in wheelchair spaces. Does that make sense? What about people with learning difficulties who may need just as much help when attending a gig as those of us with a physical disability but don’t need/want to sit in a wheelchair space? What about those of us with physical issues who can transfer so if the wheelchair area is sold out we could sit in a ‘normal’ seat but would have to pay full price for two tickets. I understand that it must have to stop somewhere and you would undoubtedly get people trying to ‘push it’, but you often have to take proof of your disability, (i.e. a Disability Living Allowance (PIP) letter) to the venue before they let you have the tickets for the show. This would cut down on the amount of people trying it on when trying to get 241 tickets, surely?

 

On the subject of gigs, the only way wheelchair users can purchase tickets is to phone up the ticket seller. This is a premium rate number and when the artist is really popular there is a long wait (90mins has been the longest I’ve waited. For Michael Jackson, no less. Managed to get tickets then he died before the shows. I’m still not over it).

  1. A) the hold music is REALLY annoying
  2. B) The automated message keeps saying “you can also book tickets by visiting our website” (erm, no I can’t, do you think I’d have spent this long on hold if I could?!)
  3. C) My phone bill has been extortionate on many occasions (because I’ve had to phone on my mobile on my way to work). And sometimes I have not even been able to speak to a person in all the time I’ve been on the line.

 

Travel

It’s super difficult to be spontaneous as a wheelchair user. I often travel on trains to see friends and/or go to work. However, trains are not at all automatically accessible for wheelchair users. To board a train, we need train station staff to be available with a manual ramp so that we can get on a train. Obviously, stations are very busy, so they ask or AT LEAST 24hours notice before you intend to travel. This involves phoning up to book assistance. What if I just wake up one morning and decide I fancy a train trip to London? Well, most staff are very helpful and will try to help. It’s usually OK boarding the train because I can ask a member of myself. However, alighting is a different story. If the station I want to depart from has not notified my destination station, I have to ask poor, unsuspecting fellow passengers to flag down a staff member for me. There have been times where I’ve been left on the train and had to go to the next stop, cross the platform and head back in the opposite direction to where I originally wanted to get to. Or staff do know that I’m alighting but take AGES (at least 10 mins) to get to me with a ramp. Most stations are very good but (name & shame alert) cough London Euston cough have never arrived on time. Oh, I tell a lie. They’re there ready and waiting with a ramp if I happen to have upgraded to First Class. Funny that.

 

Then there’s access to places… I’ve had some really fun experiences (as I’m sure you can imagine, and I hope you can detect my sarcasm there). Firstly, I will say that wheelchair access to public places is improving (probably because there’s now a law saying that buildings HAVE to be wheelchair accessible (unless it’s a listed building).

 

One of my main irritations is that yes, places might be accessible, but it takes me half an hour extra to get to my destination because I have to go round some long way because I can’t get up the steps. Or “yes, we have a disabled access room” (**Warning** I’m going to name & shame again here). Then I get into the hotel room fine, but go into the bathroom to find that the shower is over the bath. I (and many other wheelchair users I would guess) cannot use a shower over a bath. *Cough* Premier Inn *Cough*.

I’m sorry, I guess this has turned into a bit of a moan (which is not what I wanted this blog to be about). However, I did want it to raise awareness so I hope a few of you have learned something about the everyday life of a wheelchair user. Those little things that a lot of you may take for granted are not so easy with those of us for wheels; or those of us who can only use one hand… Have you tried tying shoelaces one-handed? (I haven’t mastered that yet) Or cutting veg? Doing up buttons or zips? (Those are things I can manage now…)

**I challenge you to give some of those things a go only using one hand** (Do let me know how you get on)

Finally, I’ll just talk about the inappropriate, really personal and (some may say) rude questions people as those of us with disabilities. Most of them are about intimate relationships. Why do you need to know? Would you ask your able-bodied peers the same sort of questions? (No? Didn’t think so). I’ll let you think of the questions and decide on answers for yourselves.

I’ll post links to a couple of articles relating to disability and relationships, which I’ve read lately that you may find interesting. One man asked:

“Will you have to bring your wheelchair on our date?” What?!

My response would be:

“No, because there won’t be a date after that stupid question of yours”.

Seriously, some people amaze me (Usually in a good way, but in this case I’m amazed in a bad way).

Right, I’ll go because I’ve rambled enough. I’ll leave you with the overriding message of this blog, which is: having a disability sucks at times, but it’s not all bad. We just go about giving life our best, just the same as our able-bodied peers. We just may take a bit longer to do things than they do. (But you’ve heard the story of the Tortoise and the Hare, right?) 🙂

Take care, all

Louise xx

Links:

http://www.theguardian.com/lifeandstyle/2016/feb/21/disabled-dating-tinder-sex-wheelchair-romance#comment-69159646

http://www.bbc.co.uk/news/disability-35561347

http://mic.com/articles/85201/the-surprising-way-the-netherlands-is-helping-its-disabled-have-sex#.T6p12eS0X

(Please get in touch if you’ve read any others or have anything to say about this post… I hope it will provoke some health discussion)

 

 

 

 

 

 

 

The Joys of Volunteering

In our latest blog, Lizzie talks about her time in Voluntary work & how she didn’t let Cerebral Palsy get in her way. This is another happy story, showing that our bloggers do not let their disability stop them doing what they want to do 🙂

Hi again, folks

Today I thought I would attempt to tell the tale of how I got involved in volunteering for the National Trust and how my Cerebral Palsy was not a hindrance, in terms of doing what my role requires (except perhaps for the minor annoyance being unable to room guide in the upstairs rooms). However, as usual I’m getting ahead of myself.

I should begin with how I thought to get involved in the voluntary sector in the first place.  In 2010, at 20, I had procured for myself a little voluntary job in the summer at a local youth club helping to organise and taking part in an Art Project called ‘My Perfect Day’. The whole premise of this was to share ideas with older members of the community. There was then, a group of people under 25, and a group of people 55 and over. Each of us then had to come up with an idea for a piece of art which would be an expression of our individual ‘Perfect Day’.   This art could take any form, be it, poem, drawing, collage or knitting (quite a number of the group were keen knitters). Simple enough, right? The twist was that then you had to choose someone not in your age group, who would then have the job of producing something that expressed your idea. I remember I wrote a poem for someone, whose idea of a perfect day was dancing all night with a handsome young man in a suit. Its title was ‘A Dance to Remember.’

The whole thing was a rip-roaring success, the venue we had booked was spacious, and the people were the warmest most kind-hearted people one could ever wish to meet. The thing I remember being glad of at the time, was that I was able to use a manual wheelchair, and could thus could fit into the youth club (where we did all the organising) with no problem. It may have been difficult in an electric chair. I trust the reader will not to think I am referring to the method of execution here. 🙂

This experience then is what inculcated in me a love of volunteering. It will not surprise you then to know that shortly after my graduation in November 2012, wishing to make use of my history degree, I wrote a letter to the National Trust, asking if any of the properties in my area where interested in taking on new volunteers. I hoped to be of use as a room guide, specifically.

For those who do not know, being a room guide entails standing (or sitting in my case) in a previously assigned room and being ready to answer any questions visitors may have, or to aid people in whatever way necessary. This for the most part means answering questions on the history of the house and family, although the subjects do variety from time to time and can be quite wide-ranging.

Imagine my delight then, when I received a reply informing me that Coughton Court (in Worcestershire) was looking for such volunteers on a weekend. I duly went along to an interview with a member of the volunteer recruitment team, and was subsequently offered a post as a room guide. Ever since then, everyone at Coughton be they staff or fellow volunteers, have done everything possible to accommodate both me and my disability.  I find volunteering as enjoyable and fulfilling now as I did when I began, three and a half years ago. It has also helped me further develop skills employers always look for. I would recommend this to anyone who has time and would like to get involved in something simply for the joy of it.

I hope you have enjoyed reading this piece,

Best wishes,

Lizzie.

 

Introducing Rebecca, her Family and JIA

In this post, Rebecca shares the story of her daughter, who has juvenile idiopathic arthritis (JIA). I learned a lot from this post, and I hope you will learn something too.

 

When my daughter first received a diagnosis of juvenile idiopathic arthritis (JIA) I wrote a piece on our own blog entitled ‘Even 2 year olds can get arthritis’ (http://thebeesleybuzz.blogspot.co.uk/2015/03/even-2-year-olds-can-get-arthritis.html)
You see, even though I suffered from arthritis as a child (mine started at age 10) I still found myself shocked and surprised that my daughter at such a young age of 2 could possibly have arthritis.
When people asked me why I used crutches and I told them I had arthritis, I hated the usual response I would get from them. Usually something along the lines of ‘my granny/grandad / elderly neighbour has that’.
It was (and still is) considered to be an old persons disease and yet arthritis can affect people of any age.
My daughter was lucky. The doctors recognised that it could be JIA and within 3 months she had been referred to the experts at Great Ormond Street and received a formal diagnosis. For many diagnosis takes a lot longer. In my own case it was over a year. During this time the body is attacking itself (rheumatoid arthritis is an autoimmune disorder) and the affected joint(s) are becoming permanently damaged.
Between January and March of last year, my daughter, Miss T, was in a huge amount of pain. She had multiple swollen joints. She was unable to walk and would crawl or shuffle around the house. She was prescribed high dose pain killers which enabled her to begin to walk again.
After her formal diagnosis from Great Ormond Street she Began on methotrexate treatment – a disease modifying anti-rheumatic drug (also used in chemotherapy) that can help prevent the arthritis from causing joint damage and reduce the inflammation and pain.
9 months on and most of the affected joints are looking normal. It is just the left foot which was the worst affected that still has some swelling and can be very painful.
As a result Miss T uses a wheelchair on an occasional basis (for example she cannot walk long distances)
The plan is that with ongoing physio and continuation of the methotrexate injections that she will be pain-free enough to manage without it. But for now we’ve had to experience the steep learning curve that comes with finding your child needing a wheelchair.
When faced with sympathetic stares or those who say how awful it is that she needs weekly injections of methotrexate with all the side effects that can go with it…I just want to tell them that we actually have so much to be thankful for….
That the pain is getting under control
That there are drugs that prevent the joint damage (something that wasn’t available to me as a youngster)
That there is very little that Miss T misses out on. Whilst we’ve had to make some changes to plans, on the whole we encourage her to join in with as much as she can.
That we’ve found a wheelchair that meets her needs and our needs (it took several adjustments to get it right so that it was the right fit for her as well as being comfortable enough for me to me able to push given my own arthritis but we got there in the end)
That her doctors were aware of JIA and made a speedy referral to the rheumatologist.
That she is under the care of world experts in JIA and they are hopeful of a bright future for her.
I would be happy to hear from anyone else who has a young child with arthritis. Whether you just starting out on the journey with a new JIA diagnosis or whether you are some way down the road with treatment. I can be found on twitter at @TheBeesleyBuzz on facebook at facebook.com/thebeesleybuzz and our family blog is http://thebeesleybuzz.blogspot.co.uk

Invisible

Here’s the next entry for our Poetry Competition in association with The Student Wordsmith:

Invisible
By Anwara Tarafdar

At some point in the future I most definitely
will have to get a new vehicle.
That is the nature of my illness. It may rob
me of my ability to walk. Not completely,
But devastating, nevertheless. Enough
To steal my independence if I let it.
My shiny new vehicle will have to be
The latest state of the art model.
After all, it will be the first and
possibly, the last thing people see.
They may not even see me.
The wheels would have to resemble
the alloys of an Audi A6.
The foot rests would have to be strong,
Sturdy like Doc Marten boots.
The seat would have to be soft
yet durable burgundy leather
And heated. Oh it must
Be heated! My bottom can’t
tolerate the cold weather.
I will not cover my lap with
a blanket like an invalid,
But wear thermal long johns
Beneath my leather pants
and thermal socks on my feet
inside my knee high boots.
People must not see
my new mode of transport
and only see a wheelchair!
I want it to be a vehicle they
Envy. When their weary legs complain
and when their feet are in pain
from heels too high. To be honest,
I really don’t care what they see or feel
As long as it isn’t pity or sympathy.
All I would truly want is respect,
Understanding and most of all
I want people to still see me. To look
at me, not shy away
or feel so much pity
that they cannot meet my eyes.
I do not want to be the invisible woman
in the highly visible modern
piece of technology otherwise
known as a wheelchair.

Lizzie’s Notes on Pride

I must begin this piece with a question. What would your response be when asked, much in the same vein as Heather Small posed this question in her famous and undeniably catchy tune, what in your life you are proud of? Or indeed as Heather put it: “What have you done today, to make you feel proud?”

At first this seems a simple question, until one stops to think about it. Personally, I cannot bring to mind many occasions on which I can honestly say I have felt proud of myself. That being said I do recall many a time I have been pleased about something. To me, at least, there is a difference. My hope is that in writing this I will be able to show examples of both instances when I have merely been pleased, and some of those times which might indeed have warranted the word proud to describe the particular pleasure I experienced. Thereby, I may perhaps be able to illustrate the difference between the two. Here goes nothing.

It seems sensible to start by delving in my early life to find examples. I remember being pleased, when at the age of eight I agreed to have surgery which was designed to ensure that I would be able to have better mobility as I grew older. At that young age of course, I had not the vaguest notion what the decision would mean for me. At that stage, then, I knew only that my parents were very proud that I had ‘been brave’ and agreed, and thus I was pleased in turn. I don’t think, though, that I could have said I was proud.

The earliest occasion I can remember feeling proud was on a much more trivial occasion. I was at a party when I was perhaps nine or ten, which had been arranged by an organisation called Red Caps. We, that is, my sister and, I were involved primarily because my mother was on the Red Caps committee. At this party then, I was involved in a game of musical chairs. The, for want of a better word, ringmaster would stop the music and shout something like, ‘Find someone wearing a watch’, and we children would then scramble to find someone fitting that description and drag them to a chair set up in the middle of the room before they were all taken. I remember at one point with four of us left in the game and two available chairs, the music stopped and we were asked to find a man with a beard. The other three people, dutifully went on a frantic search, but I was proud to outfox them by realising that a man standing only feet from me – the ringmaster himself- sported both a beard and a rather marvellous moustache. He consequently found himself dragged to a chair, me grinning proud to have outsmarted the others.

Some years later, I gave a speech regarding disability and the breaking of barriers to members of the European Parliament, at a conference I attended in my capacity as a Student councillor. I remember feeling proud that I had managed to get through it without ending up in a gibbering mess. I also recall being immensely pleased with the £50 I was given for my presentation, which at fifteen, made me richer than Midas.

At a similar event a year later I remember feeling very proud of my sister, Lucy, when she helped me to give a talk on disability to the Red Cross.

I was pleased when I got my GCSE results, but mainly I was relieved that I did not have to retake my maths exam, having achieved the satisfactory grade C. The same can be said when I obtained my A-levels. I suppose it may have been upgraded to pride when I was awarded my degree. I hope in the near future to be proud when I manage to pass my driving test.

What, I hear you ask, makes you most proud now? Well, if I can find a way to express this without it sounding soppy and nauseating, I am most proud these days, (always excepting the strange but great pride I feel whenever I manage to answer more than ten questions on University Challenge) is the pride I experience when I know that I have helped a friend, given advice, or had some part in making them smile.

This has been Lizzie, with Notes on Pride. Happy New Year everyone, may you all find something or someone you can be proud of in 2016.