UPDATE

Hello!

For those of you who follow me or have just come across this page you might be wondering why I've not posted in a while. WELL, I got a bit adventurous and had two blogs on the go. This didn't quite work out so I'm not updating/using this blog anymore. Instead I'll be updating:

http://analysingali.wordpress.com/

So if you're still interested, have a look at that site, I promise you that it's more exciting than this post which continues to be dull so I shall stop myself there.

Hope to speak to a few of you soon, I'll still log in on this site so I can see other blogs!

Ali
x

'IMPERFECT' Campaign + listed buildings...

I’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 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:
www.imperfect.uk.com

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

"Why are you in a wheelchair?"

Someone 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.

As 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.

As 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.