My Poker Face

August 27, 2009

Lady-Gaga11For the last month or so I have been having a rest from performing, I act you see. I do local am dram shows and shows with my college as well as the odd favour for a friend. I sing as well, mostly just musical theatre but you’ll find me in a band or a solo concert every now and then. The thing is; I hate performing as myself. I find it much easier to immerse myself into a character…it’s such a cliché but I really do believe it’s what gives me the confidence to get up on stage and loose myself.

Many people turn to me and ask how I can fully get into character whilst in a wheelchair but I just don’t think of it like that, it just disappears and a lot of people say that they don’t notice the wheelchair whilst I’m performing anyway…whether this is just them being nice is another story!

The reason I started acting in the first place was because I used to act differently in everyday life. I would be in the car with my parents and start talking in an American accent, or be sitting in my bedroom talking to myself, making up scenes on the spot to an invisible audience, for no particular reason. When I was in year eight at school I enrolled in drama classes. It was a massive release for me and really changed me as a person…I went from having no friends to making plenty, most of whom I still see to this day. I was quiet and reserved before I started acting and now, although I’m still naturally shy as a person, I feel I have gained an inner confidence… or is it an inner acceptance?

My Gaga (Grandad-long story) asked me today “What do the audience want from a show?” and I replied “They want to be engaged and immersed in a form of make believe” It made me realise that maybe this is what I do every day. I changed when I started acting, I made new friends and cut my hair but the question which keeps eating me up inside is: Is the ‘new’ me just another character in my pocket? Or did I actually become myself by pretending to be other people? I don’t know, I really don’t and I worry sometimes that one day, my mask will be knocked down and the real me will come out again. Will my friends still love me then? Bloody hell, this is deep eh?!

I’m still talking to myself by the way, although I’ve graduated from the mirror in my bedroom to talking to myself whilst driving late at night through abandoned towns….I swear to god one day someone will see me and report me and I won’t be allowed to drive anymore; it’s bad enough that I tend to sing Lady Gaga at the top of my voice whilst driving, god knows what people will think when they realise I talk to myself as well. Hopefully they will understand that it is my way of working things out and understanding how people think.

My Mum thinks I’m quiet at the moment, that I’m not telling her things, the truth is that I’m just trying to work things out in my head, I’ve suddenly realised that I’m in a wheelchair; that I can’t just go and sleep round my friends house’s, that I can’t go out and get drunk every night and it hurts; it really does. It feels like someone’s chipping into my well crafted character and telling me I’m interpreting it in the wrong way.

I’m constantly telling people to be themselves but I’m so frightened that I’m the one I should be telling that to…and I’m not listening.

Ali x

P.S. For those of you who are interested: Yes I love Lady Gaga, she’s the only chart music I listen to, the reason I love her is because everything she does is a stunning performance….and yes another reason is the fact that she is someone else when she’s on stage, watch her perform, it’s a beautiful example of some ones Poker Face (see what I did there?!).

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Sugar Puffs Climb

August 16, 2009

cerealboxFor the last week I have been making an effort to eat healthily. The thing is, I like chocolate, I like bread…I like a lot of unhealthy food, put that together with not being very mobile and I think you’ll understand when I say I’m not stick thin. So now I’m making a conscious effort to have cereal in the morning, a yoghurt for lunch and something like tofu and rice for dinner…I know, it sounds as good as it is. Ahem.

This morning when I woke up my family were still tucked up in bed except for my mother, who seemed to be spending her entire day in the shower. I went straight to the fridge, got my (rice) milk out and placed it on the counter, time for sugar puffs! I opened the medium/high cereal cupboard to find that the sugar puffs had been placed ON TOP of the pasta and rice on the high shelf. I sighed and pulled myself out of my wheelchair, using all 4 foot 11 of me to reach for the cereal box, no luck, I was still two feet away.  With great distain I raised one leg and placed it sideways onto the counter, next to the (rice) milk, grabbing onto the handles of said cereal cupboard, I pulled myself onto the work surface; bloody hell it hurt. “All this for sugar puffs” I thought. I pulled the box down and placed it next to the (rice) milk. HORRAH! Mission accomplished.

Oh wait, no, you see now we have the issue of someone who has little/no strength in their lower body stuck on a high work top. I turned my body slowly, holding onto the toaster as I did and with a great plonk I was now sat on my bottom with my legs dangling off the side. “Great, I’ll just jump off!”. I lowered myself slowly, could I feel the floor? Well no because a) I have no feeling in my lower body and b) I was still 2 feet above floor level. I sat on the worktop thinking about my options, I could:

a) Jump and risk broken bones.

b) Use my dressing gown rope to lower myself down or

c) Eat my cereal on the worktop and wait for help.

C it was!

I quite happily sat there for ten minutes, slowly eating my cereal in the still silent kitchen…and I waited… and waited. The shower was still making that ‘rumming’ noise from the downstairs bathroom.  Seriously, how long did the woman want to take shampooing?! Finally, after a grand THIRTY FIVE minutes my mother emerged from the bathroom in her dressing gown (yes, thirty five minutes and she had yet to get dressed) “What you doing up there?” she asked as she breezed past her stranded daughter.

“I couldn’t reach the sugar puffs” I said slowly.

“I put them in the soup cupboard” she replied

“No you didn’t”

“Yes I did.” She argued as she pulled a new pack of sugar puffs from the soup cupboard, which had pride of place on floor level.

Bugger.

Ali x

P.S. Anyone else who has also been stranded whilst on the hunt for Sugar Puffs due to lack of strength in their lower body, please contact me. It’s better if we work together on this one!

Piano Lifts

August 16, 2009

wheelchairliftblogLast week I went piano shopping. I don’t actually play the piano but my Mother does and my brother and I can play a mean “Heart and Soul” (known as the tune from the Tom Hanks film: ‘Big’)…we intend to learn something which doesn’t drive our neighbours up the wall very soon!

Anyway, for those of you who are not aware of what pianos are, they tend to be:

a) Big

b) Heavy and

c) Very awkward

So you’d think that they’d be stored on the ground floor of most music shops…well not my local one! Seriously, who puts a bloody piano shop on the first floor? What’s even more confusing is that on the ground floor they keep; books, guitars, percussion instruments and picks. I’m pretty sure a few books are easier to carry up and down a flight of stairs then a bloomin’ great piano BUT it’s ok, because they have a crane-type-hoist-thing to carry them up and down the stairs…so you’d think they have a lift, right? Nope.

I think I should add in at this point that I foolishly chose not to wear my shoes and splints on this particular shopping trip, instead I wore my crocs, leaving my feet virtually useless. I pondered for a moment about asking to use the piano-crane-type-hoist-thing to ‘raise me up’ whilst I sung West Life at full volume…I didn’t. My brother, thank goodness, had tagged along and told me to just crawl up the steps, so, ever so elegantly I threw myself upon the steps and started to drag myself, very slowly, to the top. Once I’d got halfway I was out of breath, bruised and a little light headed to be honest, so I had a bit of a rest. It was at this point that my brother and I turned to find that we had a little audience. Two sisters, around the age of fourteen had quite literally plonked themselves right in front of the steps to stare at the apparently amusing sight of a cripple trying and failing to walk up a flight of stairs. If you’d given them some popcorn and nachos I’m pretty sure they would have switched off their mobile phones and told the people in the front row to quieten down!

“Can you two just go away and stop staring?” My brother asked/told them in his ever so ‘subtle’ way. They finally left the attraction, slightly red faced, I felt kind of bad, I thought maybe my brother had been a bit rude….until they came back a mere two minutes later for seconds.

It surprised me how annoyed my brother got, he’s a star really; he has carried my chair (Violet) up many stairs in his time. He’s very understanding but will be quite abrupt if people stare at me and make comments. The thing is; I’ve grown used to it; I just take it as the norm to have people stare at my limp. That’s half the reason I stopped walking altogether really, my limp drew so much attention (as well as being incredibly painful!) that it became very hard for me to cope with and to this day I still feel uncomfortable walking in front of people.

So this is my official plea to the government:

STOP WASTING MONEY ON PACKETS OF CRISPS AND KIT KATS AND GET MORE PLACES WHEELCHAIR ACCESSIBLE!

Otherwise, supply some popcorn for the ‘cripple’ audience.

Ali x

P.S. I got a ‘Yamaha U3’ in the end from a shop in a village nearby ON THE GROUND FLOOR! Shocker.

If you are affected/offended by the content of my blog, please contact me.

‘IMPERFECT’ Campaign + listed buildings…

August 8, 2009

bloga+fI’ve recently come across the new ‘IMPERFECT’ campaign which has been set up off the back of Riam Deans case against Abercrombie and Fitch. I don’t fully understand the case but as far as I am aware the store in London discriminated Riam by making her work in the stockroom because she didn’t fit in with their “look policy”. Riam wears a prosthetic arm due to being born with her left limb missing, this apparently goes against the look Abercrombie and Fitch want to create for their customers. Riam is in the process of suing Abercrombie and Fitch on grounds of discrimination in the workplace. More information on the case can be found at http://www.imperfect.uk.com, they will be able to explain it far better than myself!

What I find so refreshing about this campaign is that its aim is to not only banish discrimination against ‘dis’ability in the work place but in society as a whole. Another element which draws this campaign apart from similar ‘say-no-to-discrimination’ campaigns is that it is run by Riam Dean and Sophie Morgan (some of you might know Sophie through her artwork/photography or from her appearance on ‘Britain’s Missing Top Model’), both of who are young women living with ‘dis’abilities making an impact on the younger generation…and from the reaction they are getting from their IMPERFECT campaign they are certainly reaching the right people. How bloody brilliant!

Back to Abercrombie and Fitch. After reading Riams story I feel slightly ashamed to say that I have indeed purchased many items from the store…I’m ready to be called a hypocrite BUT (and this is a very big but) I brought them in the US, long before Riams encounter with the store. Back in New York I felt the store was well laid out, accessible, inviting, the staff were helpful and the products were good. So when I got back to England and trekked up to their London store you can imagine how frustrating it was to be turned away from the front door due to steps and taken round to a side entrance “You get the VIP treatment!” the lady sheepishly smiled. Funny that, felt more like I was being smuggled in under a blanket…Once in the store I took a wander about, battling with the occasional narrow door and every so often a small step, “Where are the ladies hoodies?” I asked the same woman who had let me in the ‘V.I.P.’ entrance (who by the way seemed to follow me round like a bad smell) “They are up stairs” she replied. “Oh, so where’s your lift?” her smile faded. “Well unfortunately due to the old, listed building and the layout of the store, we don’t have one…but I can bring some products down for you?” I contemplated the idea of making the poor woman run around the store for me, making her grab items I never really considered buying, but alas I felt rather mean (not to mention I didn’t want the fuss) and so I waited for the rest of my party at the bottom of the stairs as they searched through the clothes above me, every so often bringing a hoodie down to show me, needless to say I didn’t buy anything, neither did anyone else I was with, seemed a bit, wrong.

I am not saying that Abercrombie and Fitch is the only store that doesn’t have lifts or doesn’t cater for disabled customers, in fact half the local shops in my area are completely inconvenient, it seems as though the government are hung up on keeping buildings the way they were, listing them, banning lifts/ramps to keep things looking the way they have always done. Surely now though, it is time to change, time to let us wheelchair users have access the coats and bags on the second floor.

Ali x

For more information on Riams case or to support a brilliant campaign go to:
http://www.imperfect.uk.com

If you are affected/offended by the content of my blog, please contact me.

“Why are you in a wheelchair?”

August 8, 2009

QuestionMarkSomeone asked me yesterday “Why are you in a wheelchair?” I looked at them bemused for a moment; I’ve been asked this question many times before and almost every time I’ve changed my response:

“F*** me, I’m in a wheelchair?!”
“Well I lifted myself out of bed and just got in”
“I found it in a dust bin”
“I was born with it, Mums labour was hell”

This time however I gave them the honest answer “I was born with Spina bifida”. They didn’t ask too many questions after that, in fact, I’ve hardly spoken to them since. I got the impression they wanted a more elaborate story on a horrific accident…sorry to disappoint. It did make me wander though, about why people ask and should wheelchair users give them an honest answer?

I know some wheelchair users are often offended if they are not asked straight out; they feel that people are talking about them behind their backs and I can, I think, relate to this. It drives me crazy when I’m out with my Mother or worse, a friend and the lady in the lift turns to THEM and asks THEM what’s wrong with me. Well apparently I’m bloody invisible, that’s what’s wrong with me! The thing is; I don’t feel my wheelchair defines me as a person, nor do I feel it’s an important story to tell. I don’t think I have ever turned round to a friend and told them my story without them asking. In fact many of my friends have gone months without even mentioning my four wheels.

My boyfriend who I’ve known for several months now has never asked me what’s ‘wrong’ with me, maybe he doesn’t see the wrong, I don’t know. You see, I think that’s why some people ask, they see ‘it’ as a barrier to getting to know a person properly, then again (and this is the most common case I feel) maybe it is just a mans curiosity…and what’s wrong with curiosity?

Next time I’m asked, I will reply frankly, I’ll leave the bad stuff out, I’ll give my frills and cotton candy story on how and why I’m disabled. People don’t want to know the hard stuff; they want to hear a story book answer. Maybe that’s my problem with that question, I feel I have to lie to cover up certain aspects of myself, after all, phatic conversation doesn’t call for the details.

Ali x

If you are affected/offended by the content of my blog, please contact me.

The Change.

August 8, 2009

Waiting GameAs a child I was under Great Ormond Street Hospital, I was referred there when my local hospitals and other hospitals in London realised it would be easier if all my surgeons/doctors were under the same roof, the fact that most local surgeons could not handle my condition added to the need for change. When I first started to go there it was a god send, no longer was I a small child stuck in a dull waiting room with no toys, filled with adults who either patronised me or did not know how to handle a child, now I was introduced to brightly coloured walls, comfy chairs, playing areas in waiting rooms in which the atmosphere reflected the children they treated.

For years I made many visits to the hospital, I had several operations there, handled by marvellous surgeons who somehow gave you confidence and trust when you felt you lacked it most. My parents, who have know told me that they sometimes doubted their choices/consent involving my treatment, were given all the information they needed, guided by thoughtful professionals who were always at the other end of the phone.

When I entered my teen years I started to feel more distant in the waiting rooms, surrounded now by babies and toddlers happily playing with their toys, oblivious, apparently, to the reason they were in the building in the first place. The annoying childrens TV shows seemed to be at a constant maximum volume, the jingles filling every corner of the room. I would look for magazines to read, only to find that the top choice of light reading was “We’re going on a bear hunt”, which I obviously loved…ten years ago. It was time to change hospitals, again.

For a year or so it seems you are forgotten about by the childrens hospitals yet misunderstood by the adult ones. I remember, particularly well, when I was discharged from my orthopaedic surgeon, he’d operated on me about a year or two beforehand and I had been having pains in my ankle, where the said operation had been. My foot was swollen and red so they took an x ray, put me in a cast and took my blood, only to then discharge me. My new doctor had no idea what to do with me and sent me back to GOSH, where they saw me again, took the cast off, took another x ray and arranged to see me in 6 months time…was there no way out?!

Although I still go to GOSH for certain appointments, I have now settled into my new hospitals, the waiting rooms are still as dull as I remember them being as a child, some have a few toys in, others, copies of magazines; six months out of date. Sometimes, when sitting on my own in the dim lit rooms, where phones seem to ring constantly, the water is always dry and the other patients, forty years my senior, look at me as if my wheelchair is not a good enough reason to be there, I miss the bright rooms of the childrens hospitals. What I’d give to be driven crazy by a baby crying for his milk; now only the ticking clock and the embarrassed silence as the nurse asks for the next in line.

Ali x

If you are a teen with a life long/life threatening illness wanting to be in contact with other people your own age who are in a similar position to you there is a great new charity:
www.teensunitefightingcancer.org,
It’s aims are brilliant and the work they have already done has made a difference to many teens going through ‘The Change’; I hope to hear more of them over the next few years.

If you are affected/offended by the content of my blog, please contact me.

The Worth Of Our Bodies

August 8, 2009
The Worth Of Our BodiesAs a teenager I witnessed many cases of self harming in my peer group. The reasons for which varied from person to person, at the back of the classroom sat the girl with her long sleeved jumper in the middle of summer embarrassed by her apparent need to be in control. Out on the school field stood the girl with the short sleeves, bandage loose from taking it off so many times, showing her ‘war wounds’ to anyone who would pay attention. I am not about to deny what I once did and yes it was a control issue but I dealt with it properly and fortunately did not become addicted to a problem I now feel very strongly about.I understand why people do it and how distressing it can be but after recent events in which I have seen a young friend of mine robbed of all control, in an accident which fate should never have let happen, I have a new found love for the bodies we are given. We only get one of body, unless of course you count surgery which of course is a god send to people who have had similar accidents like my friend, surely this is a reason to look after the ones we have, isn’t the control we seek in keeping our bodies away from harm?

So when I got home today and learnt that an acquaintance of mine had been self harming I was alarmed, worried about this person, slightly frustrated that he would harm is own body when a girl lie in a hospital fighting to regain the control he has abused. I spoke with him, told him I was there for him, I feel I was sympathetic however it was then he asked if I would like to see the scars the following day, I was told that he would show everyone in our class…alarm bells. Was this acquaintance abusing his body for control or attention?

I have had many operations to make my body ‘normal’, to improve my lack of ability. When I was young I didn’t understand; it has only been in recent years in which I have become offended by the constant stream of doctors telling me what is wrong with me and what needs to be improved. This has made me more determined to keep my body the way it is, the ironic thing being that it was the problems which followed my many hospital visits which made me self harm in the first place.

This makes me wander, should children/young adults be told what there is to lose if they self harm/starve themselves into anorexia or should they be told what there is to gain in taking pride and control of their own bodies?

Ali x

For more information on self harming:

http://www.mind.org.uk/Information/Booklets/Understanding/Understanding+self-harm.htm

For help:

http://www.thesite.org/healthandwellbeing/mentalhealth/selfharm

If you are offended/affected by the content of my blog please contact me or follow the above links.