Seeking Awareness or Seeking Pity?

June 29, 2012

When a girl posts a status on facebook along the lines of: “I’m so lonely, why does nobody love me?” we note this is a case of self-pity. This status usually emerges from a girl who only goes three days without a boyfriend. This brings me to my next point: look at the comments on said status; a stream of friends telling her that she’s beautiful, countless hearts made up of punctuation and of course the standard “Awh babe xxxx”. You realise that this girl is seeking awareness. Social networking sites are there to let people know who we are with, who we are friends with and that we are in fact alive.

Let’s take a more serious case. A young teenage girl is left disabled after an accident. From ‘normal’ to ‘the centre of attention’ to (in her own words) ‘forgotten’ She tells others quite vocally that has no friends, no life and nothing to do. We listen and assure her of all the good things in her life however there is a fine, fine line. Her cry for help/awareness is taking over.  Is it right to make everyone painfully aware of her own unhappiness or is she pushing herself into a worse position than before?

I was told to always be happy; no one wants to be friends with a sad person. That’s what I did, I never voluntarily spoke about my spina bifida until a certain point in the friendship. Shouldn’t we encourage others not to linger on what’s happened? Being bitter is the start of a long slippery slope. It’s right to remember and remind others of our past, good or bad, but how can we expect others to see ourselves as ‘us’, when we are tugging a massive elephant into the room?

The girl I’ve mentioned is beautiful, bright and talented. I want to scream at people who think otherwise or see her as ‘disabled’! Is her public declaration of unhappiness a sign of desperation or is it honesty?

Dr. Who?

October 30, 2011

I’ve come to the conclusion that I am amazing. I know that
you already knew this but let me explain myself.

There I was sat in a
waiting room, anticipating and praying for my name to be called out. This
wasn’t only because I’d been waiting for what seemed like an age but also
because I was sat next to the men’s toilet. Point number one: Boys smell. I was
waiting my turn when I spotted these two adult women staring into the distance
as if they had seen the Holy Grail. One said to the other “Wow, he’s a doctor,
amazing isn’t it?” the other replied “Great, amazing” in a manner which made me
believe George Clooney had reprised his role on ER and gone to med school. It
wasn’t George Clooney. Nor was it a twelve year old doctor who had graduated
university at the age of nine, won the noble prize at ten and gone on to work
for the NHS. The doctor they were gazing at was a twenty something newly
qualified doctor who was on his way down the hall with stethoscope wrapped around
his neck. He wore glasses and a name badge but this wasn’t the massive hoo har.
He was in a wheelchair. Leaping lizards, I bet he does his shopping on his own
too!

It seems that there is a percentage of the public, who upon
seeing a disabled person mixed into the harsh reality of life, think that they
are brilliant.  The world is accepting people
with disabilities into life more than ever at the moment however sometimes you
get the impression that  some people still
seem to think that the rightful place for a disabled person is at home or out
with a carer.

Before I get emails complaining that I’m tarring every able
person with the same brush, I’m not. My friends, family and the majority of
people I don’t even know don’t see me or anyone else in with a disability as
more then, uhm, people. Don’t be forced to expect less of people with disabilities.

As a footnote to this I would like to make a special shout
out to a lady at the clinic. This lady had volunteered to take an older woman
with Spina bifida to said clinic. I presume that they knew each other, possibly
neighbours. The lady in question was literally announcing to the hospital what
a good person she was. Yes, she probably was, it’s lovely that she came with
her friend however keep it down, love! Said woman then went on to run through
the waiting room shouting “Thank goodness I’ve got legs” as approximately
twelve people in wheelchairs looked on. The truth is we were all chuffed to
bits she had legs which so clearly worked; it meant she got away faster.

Dignity

October 30, 2011

Dignity; that feeling that holds us back, stops us flashing in
public and prevents us from making friends with that one person who smells of
urine. This invisible element in our lives changes from day to day.  In the past women have spent hours changing
themselves into more extravagant dresses to please others; men would strive to
work in a credible job which feeds his family. In religious groups, many women
wear burkas whilst others force themselves into marriages to better their
family name. Dignity is a constant in this ever changing world; self-respect is
always there but does it change as we grow?

As a baby we know little, we dress in outrageous clothes from
our mothers’ wardrobe and parade about in it as if it were the spring
collection. As we enter into our adolescent years we become aware of our
bodies, we strive to blend in with the crowd and be fashionable within our peer
group. As an adult we face different options our self worth is affected by our
life choices. Respect for ourselves and maintaining our dignity is not just how
we look, it’s about how we think and feel. A glamour model will strip to feed
her children, would you?

As we grow older and enter into the years when we are at our
wisest we are faced with new obstacles. Our bodies grow tired and our eyes are
full of reflection and thought. Every person wishes to take age in their stride
but many put up a fight. Some will refuse the assistance of aids such as
wheelchairs or frames at the risk that they will lose their credibility as an
independent strong person. Others will not view care homes as an option and
insist on staying as active as possible. Some have no choice. The fact of the
matter is, even if you don’t have a choice, you still have a personality. One
man will shout and scream about his rights, whilst another will quietly let
life take its course; quietly screaming and kicking on the inside perhaps.

I’m not sure where I lie in this very humble opinion on how the
human life is split up. I know that I’m young, I’m a teenager and we’ve all been
there. The time when our body is changing and our opinions on the world are
forming. We’re learning about writers and artists and seeing the world being
destroyed by people who are praised as heroes. My peer group desperately try to
fit in with the crowd…even the ones who claim that they are “individual and
original” in style. The truth is, style is repeated, we wear flares and
leggings like our parents did many moons ago. What is individual and original
is us and the actions we take. What I’m fighting to say is that dignity comes
in many forms.

Unlike the majority of my peers I accept the use of aids such as
wheelchairs and medicine, I have to. That’s not to say I’m not independent.
Which I am but some days I wake up and deep down I feel this bubbling sensation
or a niggling ache in the back of my head and I just know that this is one of
those days where I pretend I don’t care, I block off my urge to maintain every
ounce of self respect I have. I let others take over. For years doctors and
nurses have been improving my body, a slice here, a bone fusion there. I tend
to accept and not fight; although some days I can’t help but be a ‘screamer’.
It makes me wonder where my dignity went. It’s still there but it’s a different
shape now. It’s more lenient I suppose; everyone’s dignity is a different
shape. I wonder where it’ll be in another ten years.

What would she be like?

September 3, 2011

What would she be like? The girl born on the twenty-third of the third month of the year that is the year I was born.

 Do her legs slot into drain pipe jeans with shape and dignity?

Do her feet melt into high heels?

 Is her back as smooth as a back should be?

Maybe her skin is marked with the time people tried to repair her; maybe not.

Would her life be all that different? I’m not sure how deep the damage goes. Maybe her favourite colour would be purple and she would enjoy the smell of rain.

She’d be a dancer, one that trains for hours on end, although I’m not sure that she would pursue it. You see, she always excelled in math and English, perhaps a degree in English literature in Edinburgh or maybe she would become a business women, in a black pencil skirt and jacket with killer high heels to match.

She would settle down early but keep her head above water in the business department. A wedding dress down to her ankles, showing off simple white heels, decorated with lace.  Her children would be healthy and she would run with them as they battled each other in a game of cowboys and Indians. She would be a cow girl. She would work abroad and eventually move there for several months however she’d return to be with her family.

Later on in life she would retire, spend years with friends going to fitness classes and wasting time at spas in dressing gowns. Her children would grow into musicians who speak at least two different languages. They’d be successful at work and take their parents to dinner to celebrate birthdays.

Eventually she would grow old with her husband and whilst putting out the rubbish they would wonder how it got so good.

She’d look back at her life; the parties, the shoes, the work and she’d be proud.

The truth is, she would probably hate her freckley skin and straighten her hair to cover the curls. She would regret not going onto become a professional dancer.

Her friend would give birth in Holland to a girl with a ‘defect’ and she would write a ‘thinking of you’ card enclosed with the ‘Congratulations’ card. She wouldn’t know what to say to her so simply write “To Ben and Caroline, Love Amy and the family”. The scar on the inside of her foot, where she trod on glass as a child would bother her, she would use bio oil to cover the pink patch and would wear shoes to cover the unholy blemish. She would have gone to hospital on many occasions, her birth, her child’s birth, her second child’s birth and her husband’s death. On top of these would be the odd visits to a relative or friend, she would skip the canteen for fear of hospital food and leave.

She’s a good person, a nice person. She cares for others and many care for her. She gives to charities and is a shoulder to cry on. She’s different to me. We’re not really the same person at all.

I wonder if we had the chance to cross one another in the street, who would stare at who? The jealous or the curious; which is better?

Avatar: Wheelchair Bound Worthington

June 14, 2010

I watched Avatar the other night. What a fantastic film!

I’d heard a lot about the film, especially regarding the casting of Sam Worthington as Jake Sully, who uses a wheelchair due to a spine injury he acquired whilst serving for the military. Worthington however is not a wheelchair user.

The character of Sully is strong, opinionated and clumsy at times. The film highlights the fact that Sully is not a disabled character; he is a character who has a disability. I love the fact that James Cameron has created a lead, in this epic film, who challenges peoples views on people with disabilities. From the moment we see Jake, grieving the loss of his brother and going on a trip which many would say is out of reach for him, the audience loves him. His quiet nature and good looks win over the other character in the film as well.

Camerons reasons for not casting a disabled actor in this part was that he did not feel that disabled actors were up to standard. Another reason, this one being a bit more understandable, is that when Jake is in his Avatar body, he is able to walk. Cameron used CGI to create Pandora (the planet on which the film is set) and the Avatars. He would not have been able to film these CGI sections with an actor playing Sully who is unable to walk. This, I feel, justifies his casting.

I understand peoples feelings towards the casting of yet another able bodied actor as a disabled character however I think Worthington did a fantastic job and Cameron made the correct decision. Neither of them overplayed the disability and Worthington seemed natural and at ease in his chair. This is not to say that they glamorised his disability, in fact Worthingtons legs did not look like the legs of an able bodied man, they were thin and pale, the way my legs look; although mine aren’t as hairy as Worthingtons .

I am, however, against people saying that action figurines created, of Worthingtons character, with his wheelchair included should not be called an action hero as the wheelchair makes the character look weak. This is a load of crap. Jake Sully is a good role model, wheelchair included. If that offends people so much then I suggest that they buy an alternate action figure.

Hopefully the incorporation of disabled characters in lead roles will lead to casting of disabled actors in the future. I hope that this character and amazing film changes at least a few peoples views on disability.

Ali x

P.S. I love Sam Worthington, he’s Australian, enough said.

It’s Safe To Dance, Right?

May 31, 2010

Last week’s episode of Glee featured a dream sequence in which Artie (aka ‘Glee kid in the wheelchair’) gets out of his wheelchair and does a dance routine which most everyday pedestrians could only dream of doing. The director of the episode (who also directed ‘Dr Horribles Sing along blog’ which is fantastic – youtube it!) said that he thought Kevin McHale, who plays Artie, is one of the best dancers in the Glee cast and if that dance routine is anything to go by, he’s right!

A lot of people have disagreed with this dance sequence and I must admit that when I first started watching it I immediately thought “WTF?” However at the end of the number Artie is dropped back into his chair and the camera zooms out to show him alone again in the shopping centre, no trace of the dozens of dancers who surrounded him just seconds before. Quite touching, I thought!

I know that maybe a disabled actor should have been cast in the role and I know that some people who use wheelchairs might be offended but honestly, I see why they did it.

It showed exactly how I feel in the space of five minutes. When I dream, I dream that I walk, I make references to my invisible wheelchair, but it’s not there. Just like Artie, if I could go back and repeat my life out of my chair, I would be dancing on the ceiling. Sometimes it gets me down; sometimes I look for cures, like Artie, but most of the time I just carry on dancing.

The episode finished with a touching rendition of ‘Dream a Little Dream of me’ which was sung by Artie. It summed up the episode perfectly and displayed what the writers were really trying to get across; Artie has dreams, some dreams are there to grab and others are too far out of reach, but that doesn’t make them any less of a dream.

Kevin McHale is a brilliant actor, a fantastic singer and arguably the best dancer in Glee…even in his chair! In a recent episode of Glee, “Bad Reputation”, in which Artie and a few other Glee kids performed ‘Can’t Touch This’ in the school library, my Mum commented on how he used his whole body to move, even in his chair. Amen! As a performer who uses a wheelchair I can only ask the Glee writers to get McHale dancing more in his wheelchair in the show and stick two fingers up at the kids in my dance class two years ago who said “Why are you here? You can’t dance, you’re in a wheelchair!”

Ali x

Casting: Ready For The Outcasts?

April 4, 2010

I was asked to answer a few questions about inclusivity in mainstream musical theatre for a friend of a friends dissertation. The questions I was asked made me sit up and think  so I decided to write a blog about the topic in hand!

I understand that musical theatre is starting to become more inclusive (at least the critics say it is!) however there is a definite lack of it at the moment! I can’t think of a single mainstream show I have been to see where an actor on stage has a physical disability. I know that dyslexia can come under this category and that this is more accepted in theatre but I think it’s wrong that the musical theatre industry feel that they can claim that they are inclusive when in fact they are putting hidden disabilities on stage, not visible ones. I know that some characters are simply wrong for actors with certain disabilities, for instance I don’t think I will ever be cast as Baby in ‘Dirty Dancing’! Maybe if some West End theatres were more wheelchair friendly backstage then the casting would follow. It is very sad that the big wigs behind the industry feel that audiences are too fickle to accept a wheelchair bound performer.

Theatre companies such as GRAEAE are fantastic as they incorporate people with AND without disabilities into their productions and do not make a big showcase out of disabled performers. It is wrong for a theatre company to make a big fuss about having a performer with a disability in a cast; what mainstream musical theatre needs is an actor with a disability to take on a role which is not actually written to have a disability, to me that is real inclusivity.

If you haven’t been living under a rock for the last few months you will have heard of Glee and their character Artie, who is a wheelchair user, but that’s not the issue, the issue is that the actor, Kevin McHale, who plays Artie, is not a wheelchair user. I think that what Glee are trying to do with the character of Artie is very positive. The whole show is so tongue in cheek when handling minorities that they can get away with making a big deal out of Artie being in a wheelchair BUT and that’s a big but, the fact that the director has blatantly turned around and said that  actors in wheelchairs are not good enough at the moment is just plain ridiculous. I’m pretty sure that they could get an actor to play that part who is actually a wheelchair user. Kevin McHale is really good in the role and I like the fact that he plays him as Artie, not ‘Artie, the boy in the chair’ and it’s not his fault that he was cast in that role but it annoys me that they had to get a double in for some of the close ups on his wheelchair moves…I’m guessing the wheelchair double wasn’t disabled either! Also: why is it that every time there is a storyline involving him it has to be linked back to him being in a wheelchair, even his love interest story line was based around his wheels! Another point: has anyone noticed that many of the songs which he performs in, all concentrate on his wheelchair “Dancing with myself”, “Proud Mary” and “Sit Down You’re Rocking the Boat” are all prime examples. It seems that when the director or choreographer don’t know what to do with him, they stick him on guitar! I reckon if they had an actor in a wheelchair playing that role they could play about with the physicality of the character more. The one episode which did really click; and I think other actors in wheelchairs will agree with me on this, was the one in which the group had to fundraise to take Artie on a ‘special’ bus. The writers managed to hit the nail on the head and tackle problems with empathy and humour. Many people ask me if I watch Glee because of Artie, the truth is no, I watch it because I think it’s a positive show, yes it would be nice is the actor playing Artie was actually in a wheelchair but fingers crossed the character will open up the minds of young people and maybe next time when there is a part like Artie up for grabs an amazing guy will come along in his wheelchair and the casting directors will actually take notice.

I feel strongly that any characters with disabilities (and there is such a shortage of them!) should be played by people with disabilities. The bottom line is, the general public and theatre big wigs would not let me get up and play an able bodied role, so why should able bodied people be able to play characters with disabilities? Sometimes there will not be any actors with disabilities right for the part, like in ‘Inside I’m Dancing’ I think James McAvoy was perfect for the role of Rory O’Shea however we are now in 2010, we’re meant to be changing. The Paralympics are being supported right now so why shouldn’t the arts get the same attention? ‘Don’t Play Me, Pay Me’ is doing a brilliant job at broadcasting this message across Britain at the moment and other programmes like ‘Britains Missing Top Model’ have been similar ambassadors but the concentration needs to be on getting more people with disabilities involved in the arts, professional arts.

At first when I heard that the reason for the director of Avatar not casting a wheelchair user in the lead role was that due to the character having to walk in the CGI sections it was essential that the actor could walk. In another interview he admitted that disabled actors weren’t up to the standard for Hollywood films. It makes you wander that if CGI can turn actors into blue aliens then I’m pretty sure that they could pull a few tricks to enable the use of a disabled actor. It seems to be that blockbusters are not ready to put a wheelchair user into a serious role just yet, obviously they feel there has to be some humour behind it, goodness knows why! It would be brilliant to see a wheelchair user in that kind of role, it’s an opportunity missed and I can only hope that soon there will be another opportunity for an actor in a wheelchair…although I’m pretty convinced that producers will still find reasons not to cast them.

One of the only mainstream musicals I can think of which has a disabled character written into the storyline is ‘A Little Night Music’ yet even in the recent west end revival the part was played by an able bodied actor. It is also interesting that this character is an older character; I don’t think writers understand how to write a young character with a disability because it gives them boundaries. Another part is Nessa from ‘Wicked’ however this has never been played by an actor actually in a wheelchair. It is debatable whether Nessa is actually disabled as she ‘walks’ a little in Act two however I’m sure there must be some actresses with disabilities able to play the role. One part which is definitely for a young disabled actor is a character in Jason Robert Browns ‘13’, however I am under the impression that the actor who played this part in the original Broadway production was able bodied, it is shocking at how few characters there are in mainstream musical theatre with disabilities.

I would love it if there were more plays and musicals written with disabled performers in mind. It would be even more impressive if in revivals of plays and musicals, characters previously seen to be played by able bodied actors  are instead played by disabled performers. It would certainly make it less daunting to go into the industry as a performer with a disability. At the moment I see little possibility of me ‘making it’ in the West End or Broadway because the audiences are not used to seeing disabilities flaunted on stage. Ali Stroker will hopefully change audience’s views in America and I hope that England will follow their lead. Playwrights should be encouraged to write disabled characters into plays and make it accessible for disabled performers to take on these roles however I have little hope of this happening over night. Hopefully once there are more roles written for disabled performers; directors, agents and training establishments will be more appealing for young disabled actors.

Ali x

For more informtation:

www.graeae.org 

www.don’tplaymepayme.com

Girl + Boy + Wheelchair = Hmm.

January 26, 2010

I just read a Yahoo question; a boy was telling yahoo that a while ago he met a beautiful girl and became friends with her, however now he has started ‘liking her a lot more then friends’. The thing is, she’s in a wheelchair and he’s not sure if he could cope with it- her disability that is. Most of the answers tell him that if he’s even thinking about that then he is not the man for her, others tell him to gain some confidence and tell her how he feels, that way he could ask the questions he needs to.

I don’t know what I think.

If I was the ‘girl’ in this situation and I found out my ‘friend’ had posted this on yahoo, I would probably be rather upset. Here’s this guy that I might have feelings for and he’s worried about my wheelchair. However on the other hand I think: “Sure, that’s a fair enough question; I might be that way if I was in his shoes”. I just can’t get my head round it. For years I’ve wondered if boys think that way about me, it’d explain a lot, trust me. In fact only one person, yes a boy, has ever asked me out right: “Can you have children?” I didn’t know what to say at the time! I asked my Mum because obviously she has all the answers but it just made me worry about my future and I’m only 17!!

If other people are thinking that way about my future now, what am I going to be like when I actually have to deal with it?

I went to a new clinic the other day, it specialises in people with Spina bifida (wheey!) and whilst I was there I actually felt like I could be cared for in the right way, they can give me the independence I need but also give me the answers for the questions I have, or other people have that I don’t even think of!

I’m going to answer him as if a boy friend of mine had asked me the same question:

People with disabilities can win gold medals, get on the catwalk and climb mountains. Now why would we not be able to be in a relationship? P.W.D.’s get married all the time, sometimes to other P.W.D.’s but often to people without them. If you want to love me, you love all of me, that’s wheels included.

Ali

X

P.W.D.’s = People With ‘Dis’abilities (We should have t-shirts, I know!)

Eskimo Ali

January 9, 2010

I love snow as much as the next person; snow men, snow fights and snow angels are you know…cool. However this week has been a snow overload!

Tuesday, the first day college was cancelled due to the white blanket, my friend came round. She appeared at my door looking like a lost Eskimo; it was a sorry sight so I let her in. That afternoon we drove, yes drove, down to our local Costa. Oh dear lord. Firstly I got stuck just getting up my driveway, whoever decided to build a house on a steep driveway was insane and clearly has thighs of steel; so after I had called the AA and got towed away we set off on our long treacherous journey.  I had driven in snow and stuff before but it was like someone had just iced the roads, giggled then told every other driver to drive like pratts!  So there I am casually driving along, then I see that the bus in front of me has stopped, so I put on my breaks, I didn’t slow down, I pushed on my breaks harder, crap, the bus is really close now; ‘SLAM’ on my breaks but nope; I had to pull out my best James Bond moves and swerve around the bus. I came out feeling like a superhero. So basically, I’m like a snow driving legend now; I wish I could say the same thing for wheeling in snow…

Trying to get round my little town in my four wheels and six inches of snow was like putting a fish in a  bowl of jelly and telling it to swim to the other side; cruel, funny and down right wrong. The worst part was the snow fight. I was such an easy target that I may as well have had a flashing arrow above my head and a scoreboard on my lap. After that snow fight I made my way home, it was that or go into ANOTHER coffee shop and I think they were sick of us going in and getting snow everywhere, especially me because my wheels actually have the capacity to hold enough snow in their rims to build a small snow city. It’s at this point I would like to point out how useless leather gloves are in snow, my hands were very wet and very red, it was a good look!

The following day we headed over to our friends house, they all made an igloo…I stayed indoors with mince pies and heat; it was a very wise decision on my part.

So here are my top tips for wheeling in snow:

-Get good gloves

-Don’t be friends with people who will pelt you like you feel no pain.

-Wear good socks.

-Stay indoors.

Have fun amigos!

Ali x

Wheelchair raving and lumps in the road.

October 20, 2009

Inside I'm DancingThis year is officially the year of the eighteenths…so many of my friends are having wild parties, fancy dress, formal, Hawaiian, you name it, I’ve now got the costume.  So last weekend was no different, I went from one birthday meal (Nandos, which by the way do amazing veggie burgers, seriously, who knew?!) to a birthday party at the local rugby club. We all had a great time; I caught up with some friends I hadn’t spoken to in a while. Not many people were dancing when I got there so I grabbed one of my friends Mams and started the dance craze. That’s the great thing about being in a wheelchair, when you start dancing, people tend to feel that they should join in! It reminds me of a scene from one of my favourite films “Inside I’m Dancing” in which Rory and Michael go to a nightclub and Rory starts to dance. Now, before I get asked, yes, I’m a terrible dancer, I make Ricky Gervais look like Michael Jackson. There I said it, it is something I have to face up to, I’m an awful dancer HOWEVER I was the first person in a wheelchair to pass/take dance GCSE, oh yeah, check out my alloys.

After sweating off my Nandos meal in what can only be described as incoherent, completely sober and slightly deranged raving I went and sat in the bar with my orange juice (I was driving!) I was bent over across the table (sat in my chair) when one of my friends asked me quietly “What’s that?” whilst pointing at my lump on my back, which shows through my clothes like a great big bulge. I asked “What?” and he pointed again so I said “Oh, that’s my lump.”

“Why do you have a lump Ali?” he asked and for some reason I didn’t give him an answer, I distracted myself with another conversation, I was in a party spirit, I didn’t want to talk about how my nerves, bone and fat have mangled into a stupid ball at the bottom of my spine which makes clothes shopping unbearable. I felt bad after, I haven’t spoken to him about it since, it hasn’t come up but I can’t help wandering “why didn’t I just tell him?” and I think I know: It’s the part of my body I can’t cover up, it’s behind me so I pretend it isn’t there, I haven’t accepted it myself yet because I hide it therefore I don’t expect other people to understand it. Feel free to say what you think.

I went clothes shopping today and every time I tried a dress on I turned sideways and saw how my lump looked in it, fat and ugly I thought. I can’t wear pleats because they bunch up when I’m sat down, I can’t where puffy dresses for the same reason, I don’t like to show off my weak legs, I can’t wear drainpipe jeans because of my splints and now I’m obsessed with how my back looks…my back?! Bloomin’ heck, I need a personal shopper now!

Ali x

P.S. I’ve got a fancy dress party to attend next week, any ideas would be great, shopping for normal clothes is a big enough task, a fancy dress one…? ARGH!