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This is an article that I wrote some time ago entitled - "My disability – my personal view".

StickmanStickman Member Posts: 81 Pioneering
edited June 2019 in Coffee lounge
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.

 







Replies

  • April2018momApril2018mom Posts: 2,869 Member
    I love your article. Over the past two years I’ve often wondered why other folks are rude. I don’t mind it when kids ask questions how else are they going to learn?
    Just today when we were leaving the library a small child asked me “Why does he need a wheelchair”? I tell people “Spina Bifida can happen to anyone”. This is why we need to raise awareness of the importance of being kind to one another.
    And positive thinking is so important. I’m thinking of writing a book for children to read based purely on my experiences. Q and R sessions are my favorite way to educate people and spread awareness too. Disability perceptions must change but some of it must come from within. Disabled folks have to raise awareness no matter what happens. 
  • StickmanStickman Member Posts: 81 Pioneering
    edited June 2019
    Thanks.  I wrote a follow up to my article called "Social Isolation - What's That Then?", would you like to read that one as well?
  • AilsAils Member Posts: 2,268 Disability Gamechanger
    Thanks for sharing this @Stickman.  It is so honest and true!  I can relate a lot to this and have been stared at a lot throughout my life (I have Spina Bifida and walk with crutches, but sometimes use a wheelchair too).  Some people can be so ignorant and these are mainly adults!  Children are far more accepting and will be satisfied with an honest answer to a question.  I would like to read your Social Isolation article too.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • April2018momApril2018mom Posts: 2,869 Member
  • StickmanStickman Member Posts: 81 Pioneering

    Social Isolation - what’s that then?


    Social Isolation - what is that? I’ve been told that I suffer from social isolation, or maybe I suffer from lack of confidence because of my disability. Let me explain.

    For as long as I can remember, because of my disability, I’ve needed someone to help me get around - for example to go shopping or to go on holidays and I greatly appreciate that help, I wouldn’t know what I’d do without it.

    The problem is that I don’t get out and about much so I need people to understand about the impact that has. My name is Duncan and I’m disabled, I have Ataxia and loss of balance. 

    So back to the lack of confidence. Maybe I’ve hidden away in my little bubble a bit too long because people have done things for me, protected me, sometimes I think a bit too much. There’s going to come a time when I need to do those things for myself, that time is now but when I do get round to doing those things, I haven’t got a clue on how to do them, like deal with certain situations or what to say and when. It feels like I’ve gone to bed aged 21 and woken up aged 48! There’s a 27 year gap in my life, I can remember doing things in that 27 years - voluntary work, lots of voluntary work at the local neighbourhood office, an alarm company, an advice line and the local community centre, going to college, going to clubs and pubs, really getting to grips with my music and releasing 10 albums etc.. But it just seemed to drift by and I drifted with it.

    I sometimes hurt the people I like or love by saying the wrong thing at the wrong time. I don’t mean to do it but if I don’t, I feel I may lose that person and regret not saying what I want that person to know.   I said the wrong thing the other day to someone - a potential friend and now I am really worried that they will never speak to me again in the way that they used to. 

    It’s like there’s a bad memory from my past that I can’t get rid of and every now and then it rears its ugly head - I can’t stop it from re-emerging. If I could, I would say sorry to all the people I’ve hurt in the past.

    We all slip up sometimes - we may say the wrong thing at the most inappropriate moment. I’ve done that and wished I hadn’t. As I said earlier, the person I said that wrong thing to probably hates me now, or sees another side of me that they don’t like. Well, I’m really sorry I made them feel that way. Again, I didn’t mean to do it and I wish we could be friends and talk a lot. But because of my situation, not getting out and about much, I’m worried that I may slip up again and again and I don’t want to do that. So, I need friends, understanding friends, friends who won’t abandon me when I do slip up, friends who know what it’s like to be isolated.


    A sense of belonging


    I have a problem with my balance, I have a wheelchair, and I walk with a stick. I mentioned in my last piece, you cannot see my disability until I get up and walk. 

    There are, in my eyes, two groups of people - able bodied and disabled, and it seems that the two groups never mix. The sign you see on a blue disability badge is someone in a wheelchair. I’m not in a wheelchair, I can walk but not that far and I need to hold on to something just in case I stumble or fall. I feel as if I’m in the middle, sitting on the fence, there’s nothing wrong with that, but it’s like the able-bodied people don’t want to know because I have no sense of balance, with the disabled people saying, “Well, he can walk, so he belongs over there”. Myself, well I feel able bodied.

    It’s like I’m in a no-man’s land where nobody cares and nobody understands. I feel really lost - used, I’m starting to feel like an experiment rather than a human, that’s just unacceptable.

    I need people around me who have the time to listen and understand. What I don’t want are friends and acquaintances who don’t understand.

    Possibly lots of people suffer from social isolation or maybe a bit of loneliness, you can have lots of friends and be lonely, you can be in a relationship and still feel lonely. I would love to have lots of friends; I would love to have an understanding girlfriend who can give me a reassuring hug now and then.

    I’ve made quite a few acquaintances at the gym I attend. I love all my friends and acquaintances. It would be great if some of those acquaintances, if not all, could be friends.

    I think I’ve slipped under the radar, been forgotten about, nobody cares and people think I’m OK with that, really? No, I’m not. I just want to be loved and treated with respect, is that too much to ask?  









  • AilsAils Member Posts: 2,268 Disability Gamechanger
    Thank you for sharing this with us @Stickman.  So honest and poignant.  I had tears in my eyes reading it.  :neutral:
    Winner of the Scope New Volunteer Award 2019.   :)
  • StickmanStickman Member Posts: 81 Pioneering
    edited July 2019
    Thanks.  These articles were written a while back.  I've tried to stand back and take a long look at my life and how I've been treated.  It may be different now - I hope it is.  I didn't write these to feel sorry for myself, I wrote them to open peoples eyes, to change their way of thinking.  They are not meant to cuase offence.
  • AilsAils Member Posts: 2,268 Disability Gamechanger
    Thank you for sharing your articles with us @Stickman.  They are very powerful and poignant.  I'm sure that nobody will find offence in them, but realise that you are trying to raise awareness.  I hope things are better for you these days.  Do you write much?  Do you have any other hobbies?  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,924

    Scope community team

    Thanks for these @Stickman. They're very raw and intriguing.
    Senior Community Partner
    Scope

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  • StickmanStickman Member Posts: 81 Pioneering
    edited July 2019
    @Ails I started to write stories after I wrote a story about a spider called Boris for my english course at college.  I also enjoy going to the gym 2 or 3 times a week.  Writing songs and music is another interest of mine, I have written and released 10 albums and am currently working on the 11th.
  • pollyanna1052pollyanna1052 Member Posts: 1,998 Disability Gamechanger
    Yeh a lot going on there lad! 2 personas..1 you have for the public and the other for when you`re home alone.

    People never think they will suffer an accident or something that would cause them a life long disability and all the **** that goes with it. Happened to me at 45 too! I`m 66 now and still hate the deal I was given...but can`t do a chuffin thing about it...except carry on..or not...but I choose to.

    We`ve all seen Undateables.....it`s touching, it`s funny, it`s scary! But love does come to some. If you really wanted to find a partner in love, then it could be worth a go. You dont have to go on telly for all the word to see.

    I hope you find what you`re looking for. Often it finds you!

    Best wishes chuck xx


  • AilsAils Member Posts: 2,268 Disability Gamechanger
    Glad to hear you keep so busy, @Stickman.  Wow, well done on the 10 albums and good luck for the 11th!  :smiley:
    Winner of the Scope New Volunteer Award 2019.   :)
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @Stickman, thank you for sharing these honest and insightful pieces!
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    Scope

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  • StickmanStickman Member Posts: 81 Pioneering
    edited July 2019
    I'm really glad that everyone likes the pieces.  I'm a bit overwhelmed that finally I've been able to write something so meaningful, to write something that just hits people, makes them open their eyes.  I want these writings to stand the test of time.
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,924

    Scope community team

    They're very relatable @Stickman. I think that's one of their main strengths. Keep up the great work!
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • StickmanStickman Member Posts: 81 Pioneering
    I've started writing another piece about my experiences at the gym.
  • dolfrogdolfrog Member Posts: 440 Pioneering
    edited October 2019
    Hi @Stickman
    I love your articles.
    I have a completely invisible disability, my brain has problems processing what my ears hear, from birth a genetic issues really, some can acquire these issues as a result of a brain injury, stroke or progressively as part of the many types of dementia. I was always considered to be stupid not always being able to understand what others may have said. 
    Like you some years ago i tried to describe how i feel, in blog using cartoons and graphics (the actual pictures in the graphics are free gifs i can not draw for toffee)
    My old blog is at Dolfrog's Research Links (the links are on another web page) (you may need to click on some of  the graphics to read the text)
    I am almost house bound due to others not understanding the complex nature of my disability, so that i can avoid being viewed as being stupid by others when I am not able to understand what others may say.
    Looking forward to reading about your gym experiences
  • April2018momApril2018mom Posts: 2,869 Member
    May we read it? 
  • 66Mustang66Mustang Member Posts: 4,634 Disability Gamechanger
    Excellent articles. I can relate to a lot of it even though I don’t have a physical disability. 
  • StickmanStickman Member Posts: 81 Pioneering
    I have ended up writing another article, this time the article is about Bullying and Cyber Bullying.  I have posted it on my LinkedIn page.

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