>I originally wrote this in September 2003. I just found it and re-read it and wanted to share it here. It has some relevance to the entry I am writing for the next disability blog carnival which will be posted within the next hour or so, most likely. I consider this to be the first time I wrote a “disability essay” and wrote truly and honestly about my disabilities and what the had meant and did mean to me rather than writing something negative out in the “heat of the moment.”
I come with wheels
Crippled, disabled, spastic, stiffy, handicapped, weirdo, diplegic, cerebral palsy sufferer, abnormal, disabled, freak.
A whole host of different ways to describe who I am, what I am. But none of them are important, not one of them matters to me. To other people those labels are the only ones that matter. My immediate family and my friends and I all realise exactly which label is the most important and of course, it’s the one word that’s never on the list, the label that’s always overlooked.
What is that label? Simple. It’s Emma. Because that’s my name. That’s who I am.
I am 21. I am student at university studying for a degree in Business Studies. I am from the UK and I have a younger brother and a younger sister. I love partying, shopping, swimming and the Internet. I get by with a little help from my friends, there’s a lot more of me then meets the eye.
It has taken me many, many years to realise that yes, some of those hurtful labels do apply, yes I am disabled, yes I do have spastic cerebral palsy diplegia, but it doesn’t matter. Others may see me as an object of pity but I don’t need their pity and no matter what they think, I know that for a fact.
Yes it did take years of hurt every time I realised just how different I was. Crying and screaming at the injustice of it all. When all I wanted was to do something so simple that meant nothing to the able-bodied people who surrounded me, but which meant the world to me. I would try my best, give it my all, but I wouldn’t succeed.
I would feel like the world was mocking me:
“What gave you the right to think you could do that you poor little girl? You’re a freak, Emma, an abnormal person in a chair with wheels. You have cerebral palsy. It’s all you are, all that will ever matter about you.”
That’s what the stares whispered to me, what failure represented.
Now though, 21 years since my birth 6 weeks prematurely, and 19 years since my parents received that devastating diagnosis I’ve mostly learnt to rise above all of that, to focus on the positive and never the negative. To do what I want, to ignore the fear of failure.
Well, most of the time anyway…
I am disabled. I am not a “normal” person. I have a “problem”, I am “different”, however you want to put it, it all means the same to me, even if it doesn’t to you. Days go by when I hardly give the fact that I have CP a single thought.
I have Cerebral Palsy. So what? The stuff other stuff I wrote about myself is so much more important then that. The CP is just part of my life, the rest of it is my life.
That’s not to say there haven’t been times when life has been hard, but that’s true for anyone, CP or no CP.
Do me a favour? Don’t ever refer to me as “suffering” from Cerebral Palsy. To suffer is defined as to appear at a disadvantage, to feel pain or distress. At times I am in a lot of pain and I can get very upset about stuff. But it’s never the CP that I’m upset about its all the fighting that goes with it. I probably appear to be at a disadvantage too, but there are advantages too and quite good ones at that.
Nor do I have an illness. An illness is something that is wrong with you. What I have is a lifelong disability and an it’s not something that is “wrong” – for me it is what is right. I have never known life without CP and wouldn’t know what to do with myself if I woke up one day and was able-bodied.
Just because I am different to you that does not mean you have the right to start questioning me (or worse whoever I am with) about every little aspect of my life and my disability. I don’t mind talking about it but it’s not really any of your business.
When I went home for the Easter holiday in my first year at university I went on a trip to London with my Dad and brother. We were sat on the train home, my brother was sat next to me and my Dad opposite next to an older lady who was travelling alone. She had obviously seen us get on together and after we had been sat there for a while started asking my Dad about me. “Is she your daughter?” “What’s wrong with her?” “How old is she?” He answered all those questions with one or two word answers, probably not wanting to tell her but resigned to the fact that people want to know all the gory details. Then she asked another question:
“Can she hear and speak?”
Dad just snapped “She’s at university” and turned away. My mobile rang and I answered it laughing inwardly at the woman’s expression as I spent the rest of the journey chatting away to a friend.
As I said before, CP is simply a part of my life; I refuse to let it become my life. There are some advantages of it though.
I enjoy using my wheelchair. It’s good fun and I never have to look for a chair or stand for long periods of time. If I’m feeling a bit active there’s always the opportunity to use my walker for a little bit. Then if I’m feeling very adventurous the thrill of taking a few steps unaided is one that has to be repeated time and time again to reach its full enjoyment potential.
Next there’s the times when you’re with some sort of disability “specialist” who has been told time and time again that words like “cripple” and “handicapped” are not politically correct and should not be used and you’re going “blah blah blah, yeah I’m a cripple.” I did that yesterday when my physiotherapist was here and he didn’t know whether to laugh or be shocked at my attitude. It’s very amusing and I recommend it.
The ability to say “yeah, look at me, this is who I am” was one that has taken me many years to develop and I’m not sure I’ve got it 100% of the time even now. It’s an ability I am proud of though, one I am glad of even though sometimes it is still too much for me to manage. It’s like Gloria Gaynor sang:
“Life’s not worth a damn till you can say:
I am what I am”
For many, many years should someone point out the fact I had CP I would be embarrassed, would want to run away and hide.
The problem with that though was that I cannot run. Nor should you ever run away from something – stand up to it (or sit up as straight as you can), face it down and learn from the experience.
Maybe I’m a hypocrite though, because once again its one of those things which is so easy to talk about and not too easy to actually do in real life. Yes, I do it. Yes it does take medication (anti-depressants) at the moment to allow me to do it, but that doesn’t really have anything to do with my disability. I used to be able to do it without the anti-depressants and I will be off them and living a medication free life again one day soon. As for now? I just accept it, take one pill twice a day and get on with my life the rest of the time.
I am disabled and it is true that a lot of disabled people do experience depression of such a severity that they would benefit from medical intervention (whether or not they actually admit they need it and therefore receive it or not) it is also more common for women to receive treatment for depression then it is for men to do so. Plus I am also a university student and again that is a risk group for depression. So really it isn’t really surprising that I am depressed, even if my parents and some friends seemed to be surprised by that development.
Many people within the medical profession just assume that simply because cerebral palsy is a lifelong medical condition, those who have it do not have to go through a period of acceptance of the fact that they are “different” and grieve for the abilities they feel they should have as someone with a degenerative condition such as Muscular Dystrophy, or who was disabled by an accident would. That isn’t true, however, as any person with CP could tell you.
I think I must have been twelve or thirteen when I realised that this was it. This was forever. Before that I was convinced that one day I would simply rise up out of my wheelchair and walk away from it. My punishment would be over and I would never again look at the pile of steel and the wheels that formed my cage.
One of my favourite magazines at that age was called “Just Seventeen.” One week there was an article in it about this celebrity called Katie something or other, that I had never heard of and still don’t know what it was she was famous for. It was talking about how she had scoliosis or some other severe medical problem when she was a teenager and could have ended up in a wheelchair. She went on to say in the article that by doing a lot of physiotherapy she had been able to relearn how to walk and stop using whatever walking aid she had previously had to use.
The aim of these “It Happened To Me” type articles always was to help readers to realise that they are not alone, their idols had similar problems when they were younger and got through them. They are a way of telling people not to give up hope – but for me the article about this Katie girl caused me weeks of anguish and I almost gave up hope for the future.
My brother is about three and a half years younger then me but because of my disability there have been a lot of things he did before I did and things that he can do which I may never experience. He has had a job, I have had to focus solely on my studies and so have not. He can drive; I had lessons but had to give it up. He has a girlfriend; my experience with the opposite sex is limited to a few kisses and some harmless flirting.
The day all the stuff with the Just Seventeen article came to a head, my brother was allowed to go to our local shops by himself for the first time ever and I was crying and screaming because I was not allowed to go with him. I really made a huge fuss because I thought that my mum was being grossly unfair but now I know she was doing it for own good. Then my mum saw me reading the article (which I had cut out and read and re-read) and realised that I thought I was going to get better.
That must have broken her heart to have to sit down and explain that no, this was forever. I wasn’t going to ever leave the hated wheelchair behind. Surgery or physio or other treatments may improve my condition slightly, allow me to walk further, but I would never be normal – I would never walk without looking weird, I would never run or jump. I think, aside from when we had a death in the family, this was the most upset I have ever seen her. She held me while I sobbed and I spent most of the rest of the day crying. Life as I knew it changed forever.
Everyone with a disability, particularly a chronic condition, will have had that kind of light bulb moment when they realised what their whole life would be like and had to begin the process of acceptance. And it is a process. I truly believe that when you are a child you don’t realise the looks are pity, the questions are rude, the physio sessions aren’t things everyone does – your mind waits until you are old enough to cope with the knowledge before it gives you that realisation and you have to begin the slow and painful process of acceptance – something that you will perhaps never fully reach and which you may spend your whole life striving for. I’ve managed to accept everything pretty well know (I think) and most of the time I just think “so what?” when it comes to disability issues. But it did take time.
Surprisingly enough, it wasn’t those events that triggered my depression and caused me to need medication.
For a disabled person to be successful and to be the master of their own destiny they must be a fighter; that is a must. Support and services are provided for you but only if you are prepared to admit that you need them and then give your all in the fight to get what you both need and deserve. At times you will feel like giving in, plenty of times I’ve felt like its all to much for me and broken down in tears at the prospect of another battle but I keep going; I have to.
Recently though, the fight got too much and I became severely depressed. It wasn’t just my CP that was the problem. In fact it’s more that I got messed about by loads of people about loads of different things and in my entire life there felt like there was no single thing I had any control over.
I have a fantastic friend, a friend who is able-bodied, surprisingly enough and who was there for me unfailingly throughout this and who helped me to get through this just as she has helped me through anything and everything that life has thrown at me in the two or so years we have known each other. I do however have more than just that one friend and I think that my friends play a very important part in keeping me sane. Whether it’s the friends who are disabled too (be it by CP or some other disability) who just completely and utterly understand what it is like to not be able to do something that you really, really would give anything to be able to. Or the other friends who take me on a night out, buy me drinks all night and then decide they want to go to an inaccessible nightclub and so set out to sweet talk four bouncers into carrying me down a flight of stairs so I can go too because they know I would love it.
My friends probably don’t know just how much they mean to me. I’m as close, or possibly in some cases, closer to them as I am to my family. At times when things have been tough and I’ve been alone I’ve found myself wanting my friends support more than that of my family. Just like The Beatles I really do get by with a little help from my friends.
That doesn’t mean that I don’t really like my own company and that I’m not my own person. I love my friends and my family but I love a good bit of me time too. At the moment I’ve got the hall of residence where I live completely to myself. As much as I love it when its full of people and there’s always someone to talk to, I’m loving it just as much at the moment when it’s completely empty.
I would be the first to admit that there are things that I can’t do for myself because of my CP. However, don’t ever try to tell me that I won’t be able to do something. I am the one with the CP, not you and I know what I can and can’t do better than you do.
When I first left school and went to college to do my A’ Level’s my entire class went on a team building exercise for a day and the lecturer in charge made the mistake of telling me I wouldn’t be able to join in with any of the activities. That was the biggest mistake she ever made when she was teaching me and it wasn’t one she would repeat. There were five activities planned for the day. I took part in four of them and that woman never said I couldn’t do anything ever again.
I have a bit of a thing for collecting song lyrics and quotes that are meaningful to me or that I just enjoy which is why I have included a few in this essay. As I write this I am listening to Christina Aguilera – Fighter because I think it really sums up the attitude that I have towards my disability:
After all you put me through
You’d think I’d despise you
But in the end I want to thank you
Because you made me that much stronger
I know I’m not fully there yet with my journey towards acceptance and I don’t expect to ever actually get over those occasional little niggles about my “problem”. What I do know though, is that I’m a lot better now then I was that terrible day when I was 13 and knew this would be forever.
My name is Emma and I come with wheels. They aren’t going to stop me and neither are you because living with cerebral palsy is not a problem no matter what other people may tell me. It’s my life and I love it.