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Hi, my name is wheelieDebs!

I have cerebral palsy, I am 51 years old, and I try to lead a positive life despite the battles we all face.  I have a 20 year old daughter who is my life and soul and I lead an active life as much as possible.  Unfortunately, although its not widely recognised, I have experienced deterioration with my disability, medically recognised because of scope (thank you) and I cope the best way I can with support from direct payments which helps me lead a positive way of life.  I do what I can through volunteer work to help and pass on advice to help those in need.
My passion is disability rights and equality as it comes from the heart and I have lived an inclusive life for 34 years but at times it has been a struggle not just physically but emotionally, even from your own family members.  So here I am, I hope we can learn from each other.

Replies

  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,729 Disability Gamechanger
    Hi @wheelieDebs welcome to the community!

    So lovely to have you here, do jump in and join in on conversations! A good place to start is the recent discussions where you will find all the latest posts and the categories sections where you can see posts separated into topics.
    Scope
    Senior online community officer
  • mossycowmossycow Member Posts: 495 Pioneering
    Hi @wheelieDebs, What a fantastic name!!!!

    I enjoyed hearing about your life as your about 10 years ahead of me!  I have a 9 year old and struggle less now in terms of my disabilities letting her down... I now know that all I need to do is listen to her and love her which I can do even on my hardest days. 

    What volunteer work do you do?  I am just beginning to kind of build up a 'work life' (as different to being Mummy, keeping house going ) and considering it a privilege to do different things that perhaps I would have done in my 'able body state' of 5 years ago. I am a secondary music teacher so now enjoying being at my daughter's school an afternoon a week (when well) getting used to manoeuvring in a classroom in a power chair. VERY FUN!!!

    You sound so positive and it always rubs off on the reader

    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

  • wheelieDebswheelieDebs Member Posts: 3 Listener
    Hi. In terms of volunteer work it is a mixture of reception work at the local carers centre. Were you get all kinds of people in with different problems but mostly they are under stress due to being a carer, and I work at another local charity advocating for better lives for disabled people.  To be honest the two can conflict with each other as carers sometimes want to suppress the lives of their loved ones (thinking they are doing the best for them) and the other charity is all about giving the disabled person the freedom to choose what they want to do.  I, of course, want to see disabled people fulfil their potential, but they have to fight for it and carers want to protect the disabled person from any risk or hurt. So in the near future I have got a big decision to make and it is leaving me in turmoil. 

    Professionally I am a trained Disability Equality Trainer, but I've not done this for a few years now, but I'm hoping I can get back into it this year, providing we get funding.

    For those people who have been around me a long time know that I am a wealth of information on disability issues and also I have a strong sense of Justice.  Sometimes people perceive me the wrong way for many reasons, either through what they see in front of them ie a woman in a wheelchair, can't be aware of much, or the other way, as I speak so well they think I'm more physically capable than I really am!!!  I can't win he he!!!

    My daughter, well we've had our ups and downs, but now we are definitely on the up side.  She lives with her Dad 25 miles away, but to be honest if we lived in each others pockets we would kill each other.  Believe it or not, the distance keeps us closer.  I ring her every day though and support her emotionally, which means a lot to her.

    Acquiring a disability is completely different to being born with a disability.  From being a child peoples expectations of your life becomes less, and unless you have positive parents your life could be positive or negative, depending on the attitude of the family.
    Becoming disabled you have already established your worth, and so it is a matter of finding out what you can cope with.  Yes, its always a fight to get people to see you as an equal, adaptions and attitudes are difference everywhere, But my biggest problem was convincing one half of my family that I belong in society with the same opportunities as everyone else, and fighting your families deep rooted beliefs is really hard, and since my Dad died, I felt I have lost my family support, and I'm still struggling today.  However, the people who surround me, my friends, keep me going.

    Keep striving for what you believe in, and surround yourself with positive people and those who believe you can achieve.
  • AlexAlex Scope Posts: 1,324 Pioneering
    edited January 2017

    Welcome to the community. It was so interesting reading your post.

    It's great to have you on the community - you have a great attitude, and I'm sure your wealth of experience will be really useful to others here.

    It's interesting what you write about people's expectations for your life. The attitude of parents clearly makes a huge difference to someone's chances in life. Often when I read articles and interviews of disabled people (like TV stars and paralympians) they talk about how instrumental their parents were. I think (hope) most parents/carers that come to this community are those kinds of parent - willing to fight hard to give their kids the best opportunities. it's sad to think there are many out there aren't like that.
  • wheelieDebswheelieDebs Member Posts: 3 Listener
    Yes in my local experience the more the parents believe their kids can achieve a great life, so the kids believe in themselves to.  I went to a local segregated school in the 70's and 80's and from the family backgrounds you could tell who were going to achieve in life (although limited in some areas), and those who would always sit at home/day centre and do nothing.

    For me personally, it was my Father that encouraged me to dream 'big' as they say, however even his ideas were sometimes un-realistic.  (He thought I should be an Air hostess - bless him).  However, he was right, I have flown most of the USA and other European countries.  It was his belief in me, ie just as good as everyone else, that gave me the strong determination at 16 years old to leave the 'disabled world' and go to a mainstream local college.  My life completely changed after that and I fitted in very well, even going into town with friends at the weekend and getting drunk, like all 17 year olds do!  And yes I did pass my college course, which also added to my academic achievements.  Although I was never clever enough to reach university, (but neither did my sister) I believe I achieved as much as I could to help me build a life for myself.

    In later life I did more qualifications and training to develop my natural teaching abilities as a Disability Equality Trainer and an advisor on disability issues and 'inclusion'.  This comes from my 'life experience' of living in an in-accessible environment and dealing with peoples discrimitory attitudes.

    I also have a natural ability to see both sides of the argument, ie disabled verses
    non disabled, and a psycological view on why people 'do what they do'. I should have studied psycology but the lack of academic understanding would have hindered me ie can't spell or understand long words!!!
    I have a lot of 'common sense' as they say, and my mother always says, "they don't give degrees in common sense"

    My confidence in being able to talk to anyone, has made my life expand so much that I know so many people from all walks of life, and I have learned from talking to them about their lives and experiences.  Not everyone likes my forthright attitude but you cant please everyone, can you?

    My family. To be honest since my Father died in 2004, most of my family are estranged, especially my sister, but I am trying to 'bridge the gap' with my Mum at the moment, for my daughters sake.  Its tough though, but I just have to keep trying and time as proved that all lies are proved wrong in time.

    However, there are people that believe in me and love me, and I am grateful for their support.

    I believe in equality for everyone, not just disabled people.  But equality comes with a price and sometimes you have to fight for it, and not all disabled people want to challenge society for fear of being rejected, lack of confidence or just plain characteristics, which do play a part.  That's why young people still go to segregated schools and colleges and end up in day centres all of their lives.  It is a shame that in the 21st century, 21 years after the Disability discrimination act, people are still segregated and more importantly chose to be, and the fight for equality is just a bigger fight now as its always been.   Four times, last year I was discriminated against so severely that I had to challenge it, never mind the daily/weekly incidents that I just 'let go over my head'. 

    However, my view is that even though we have equality laws there is always a 'loop hole' that means that in reality the laws are not worth the paper they are written on.  Take the recent Yorkshire bus incident and Supreme Court Judgement.  Now everyone knows that a bus driver cannot make you move out of a wheelchair space, so you are back to relying on peoples good nature, and 'up here in the north'  Mothers with prams truly believe they have a right to be there and you will never get them to move.  However get me on that bus, with my knowledge, and blunt attitude, I will have them begging the bus driver to let them off the bus!!!!!

    If you want to fight for equality you need to arm yourself with knowledge that can justify your argument, and a no holes barred attitude that shows people that you will not tolerate their discrimitory attitude.  If talking to them doesn't get results, and sometimes it doesn't, either go elsewhere or convince them disability can happen to anyone, and they to will be treated with dis-respect.  Harsh, but no harsher than they are treating you.

    Sometimes, non disabled people who never experience discrimination go through life with either blinkered attitude or a 'not my problem' view of life that when something does happen they struggle to come to terms with it or are the loudest to complain.

    So, I'm sorry to just ramble on, people say I should write a book, but I try to get started then my enthusiasm waines.

    Take care

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