This is an article that I wrote some time ago entitled - "My disability – my personal view".
What is it with disability? What is it about disability that people are so afraid of? Why do people treat me as I’m from another planet? What do you see when you look at me – do you see my disability first or a person?
My name is Duncan and I have a disability – a walking disability so, I walk with a stick, is that strange? Not really. But some people, I mean teenagers, and sometimes grown up people (err...adults?) find it rather amusing to look, stare and tease – sometimes laugh at people with disabilities. Some people just don’t want to know – (ooh, I don’t want to know that person, they’ve got something wrong with them). After all, it will NEVER happen to them, right? Disability will never intrude into their lives, will it?
As I said, my name is Duncan and I’m 48 years old. For the last 45 of those years, I have had to cope with loss of balance and a little bit of Ataxia (jerky movements – spasms down the left side of my body – messages from my brain to the left side of my body are getting blocked). The left side of my body is weaker than my right, that’s because of a tumour, which was in the right side of my brain. Now, I’ve just mentioned a tumour. What happened to me 40 years ago is that I was diagnosed with an Astrocytoma, a brain tumour, simple as that. It turned out to be malignant and my disability is the result of a brain injury following brain surgery to remove the tumour.
It’s been a tough 45 years. Having physiotherapy to learn to walk again, going from a wheelchair, to a couple of walking frames, to two tripod sticks, to two walking sticks and then just one walking stick. Personally, for me, it’s been really hard and my confidence has been knocked quite a lot. You see, it’s easy for an able bodied person to walk and run – to do things that don’t need thinking about. I need to think about my balance and where I put my feet, I need to stop every now and then to regain or correct my balance. I can’t run, but then why should I? So I just get on with it. My walking may look funny to you, but what you see is about 38 years of practice! I’ve learned to do things by trial and error - my own way, no-one else’s way. People try to make me walk better and I’m getting there, but it’s not going to right itself overnight or in a day or a week or a fortnight. At the moment I’m comfortable with where I am regarding my balance. Every time I see a different doctor or specialist they get me to do something different. One doctor will get me to walk this way, another doctor will get me to walk that way and it’s confusing not only for me, but for my body. I feel it puts me back a couple of steps so I never actually get to achieve my goal. I feel as if I’m going round and round in circles. At the end of the day, it’s me who has the disability, not them – it’s me who has to cope with it.
I don’t have a job, so no job security – I am on benefits. I am on benefits for a reason – that’s because I’m disabled. Some people see those on benefits as no good scroungers. Well, I’m just as good as the next guy. So what? The fact that I don’t have a “proper” income shouldn’t be a problem, should it?
I find it hard to make friends, or get a girlfriend, because I’m shy and I worry about what a girl is thinking if I were to ask her out, but sure, I would like a bit of love in my life. I would love the chance to have a girlfriend. I really worry about that, but I shouldn’t because the situation of me not having any balance is out of my control, there’s nothing I can do about it. I never asked to be disabled. But some people treat me as if it’s my fault that I am and that is hurtful.
You cannot see my disability until I get up and walk. I could be sitting in a bar in town having a drink when some nice looking ladies come in, they look my way and might think “ooh he looks nice”, then they see me walking with my walking stick and may think “Mmm – maybe not”. That’s probably because they are looking for the perfect partner. But, no one’s perfect, are they? So, to think that someone I take a liking to thinks like that is again, hurtful. Do you think like that?
Now don’t get me wrong, I do a lot of positive things in my life; amongst them I go to the gym three times a week and also do a workout at home everyday which helps stabilize my balance, I go out with a small group of friends once a month for a meal, I go to a bar once a month, I go shopping every week with a friend, I have a little bit of a chat with acquaintances every time I see them. I changed my whole lifestyle a while back to focus on the positive side of things. I’ve even got my own record label and although it's just a hobby, I treat it as my job, At present, having produced and released ten albums; I am currently working on the 11th. My music is distributed all over the world and I work hard to promote it on-line. I do this because I enjoy it, I do not do it for money but if I do make any money it is a very, very small amount. It’s a lot of fun and can take up a lot of time as I’m on the internet every day! I also go to a social media meeting once a month and talk about what I’m doing with my record label. But when I get home and close the door, it’s just me. All of a sudden, I’m lonely and the negative thoughts come back and I can get really upset and depressed because I feel lonely, left out in the cold – excluded, so every now and then I’m bound to slip up and say the wrong thing, please forgive me if I do as I don’t mean it.
It is said that disability is a bit of a dark area, a no-go subject, so it’s swept under the carpet and not talked about. It can be the loneliest place. I don’t know what the future holds. I’m unsure whether I’m going to get up tomorrow and walk. My balance may be a bit better or it could be worse. I’m unsure of my future. If family and friends are worried because they don’t know what’s going to happen to me in the future and that they have to look after me and assist me to get about, how do you think I feel?
What happened to me 45 years ago could quite easily happen to anyone. They could suffer a brain tumour, trip over and hit their head, trip up and fall down the stairs, get run over, go for a night out, get a bit worse for wear and end up in hospital.
I just want people to give me a chance, a fair go, to understand, is that too much to ask? Is it? You can talk to me, ask me about my disability, I’m only human, I won’t bite – honest.
My name is Duncan and I have a disability – I can’t change that, but you can change your viewpoint.
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