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Getting people PAST the disability to give me a CHANCE at anything!

ulrichburkeulrichburke Posts: 11Member Whisperer
Dear Violet..

I've got Cerebral Palsy, Hydrocephalus, Caetextia and Asperger's as well.  They come out in my face/ physique, let's face it, I could be one of Santa's Little Helpers no questions asked!  THAT'S what's always killed me in Life.  In others' eyes I'm Harpic (clean round the bend), Shrek, Monster man, Hellboy, I'll let you finish the list off.  I've been beaten up more times than I can count, burgled so often the cops have had to move me between 3 cities (well, 2 cities and 1 very large town) for my own safety. I've got permanent head scars, had all my teeth kicked out,  had my legs permanently scarred with boiling water, intentionally thrown by a woman who didn't approve of a disabled guy working in a day centre. I've never had friends, nor been  out with groups, nor known how to interact with groups, it's like they're speaking a foreign language. And I've been banned from many places for trying (including the local Pier - got banned from there because my face, apparently, scared the other customers.  That was years ago. Now I'm just banned because I'm on the banned list, nobody remembers why.  

I've never given up.  I'll say that much for me.  I've never failed any exam. I've ever been put in for even though, yes, I do find copying from black boards almost impossible - I read/take n otes from books instead. I don't drive because I've never felt safe past about 30mph - controlling an object at 70 on a motorway, not me!  I've applied, religiously, for any and every jo b I thought I could do, paid or voluntary, my entire life.  I still do. And I've been turned down for every single one of them.   Sorry, you got no references/not enough previous experience/Look at you. You REALLY think you could do this? You're just an effin/ failure/waste of space/parasite....'  The last was a sudden ejaculation from someone who wanted a guy who understood databases. I'd thought I was doing well in the interview till then! (Yes I DO understand basic databases, btw. Got a qual. in DBASE!)  But it's sentiments echoed by  many others. Yeah, I get a little suicidal over all of this at times. It's a huge weight pressing down on m e. Dad always told me I'd be a failure. I always thought if I took my chances and worked hard enough I'd prove him wrong.  But thus far he's been right. They never give you a shot. Or if they DO, you've got to get it right first time or they'll use your learning curve as permanent proof of your uselessness, that you should never have been given the chance at all.


THAT'S the bit that hurts. Not failing, but never having been allowed to try.  I mean OK I'm an ugly sod. Granted. But I'm an ugly sod with 16 good quals. including an HND equivalent. Surely that should count for SOMETHING? And even socially nobody lets you join in.  Want to go  to a gym? Sorry - got to have someone with you at all times, mate. Want to join a Meetup group? You get to the venue, no idea who anyone else is (I can't recognise people from pictures, my brain doesn't' 'do' pictures at all well) so you text the group leader... 'I'm not here to answer your texts. You obviously don't want to be with us, we're taking your name off the group.' So I tried another, and another, and another and finally it dawned that I just wasn't human enough to be wanted by other people socially. So I stopped, because I was getting banned from all the places anyway (I don't have to DO anything to get banned,  I just have to BE!) I've never had friends nor any kind of a social life, or ever really interacted with people at all. How many other guys can honestly say they've gone through an entire life never knowing how to have a conversation with anyone?


I want a chance to try, or what's the point of being here? I want to know how to interact/have friends, or what's the point in claiming to be human (OK, I know I'm technically not human but you know what I mean.) I want to know how NOT to feel scared all the time - there's a guy in my flats who kicks my door in because he says I walk too loudly, there's others who want me out on the streets, who say I shouldn't be allowed near normal people/kids. (I've never done anything to a kid, but when I was one I DID go through a phase of being 'got at' by adult males.  Was 12-15 then. Oddly enough it felt comforting in a way because they were the closest thing I had to friends. Forget school. You don't go to school when you're me, EVERYONE'S the bully cos you're the only spazmo. But there's one thing I've learned from all of this.


In humans, dividing developmental stages up by age is meaningless. They treat you exactly the same way whatever age you, and they, are. At school, you get kicked out of the friends groups. After school there's work which are larger 'friends' groups if you think about it - you get kicked out of those, too, same reasoning, you don't fit.  And of course you're still getting kicked out of adult groups (and kicked over by the adults, just as you were by the school bullies.) Everyone's got a reason NOT to let you do things, just as those in school had reasons NOT to let you join in with them.  People are people, age is meaningless. They still don't want to give you a shot, they'll invent their own reasons why.


I'm sitting in a flat where the heating doesn't work, there's water coming through holes in the ceiling, I'm scared of being burgled every time I go out or meeting the downstairs neighbour when I come in. I'm banned/feel unsafe in so many places (can prove that) I have to travel an hour on a bus to find an area I feel safe being in (Crawley, but if I lived there it would probably end up like every other place I've lived in.) I've never had friends or a girlfriend - came close a few times but they were disabled and got taken away from me though we wanted to be together.  When I go out I spend all my time looking at people in groups, talking on cellphones, going to be with groups, taking it all for granted and my envy's a knife in my gut. If I'm never going to have a shot, be honest, tell me and I'll leave this planet now, I've got a bottle of stuff I got off the Internet I know to be relatively painless, I'm not bad at science. But there's GOTTA be a way to have a shot, hasn't there? (I've got an online lady friend who's come to visit me ONCE, but her kids didn't approve of me seeing her and I'm too scared to go up where her kids are and she's too scared of their reaction to come down here so we're stuck online!  She says she's too disabled to travel this far. I know she's not, she goes to see other friends equally as far as am I, all the time.)

What do I try next?

You tell me.

Yours respectfully

Chris.

Replies

  • Sam_ScopeSam_Scope Posts: 5,690Administrator Scope community team
    Hi @ulrichburke
    Welcome to the community, thank you for sharing - it sounds like you have had a really tough time throughout your life.

    Discrimination is not acceptable and Im sorry you have had to face so much.

    We have a lovely and friendly community here so do join in and share.

    You might like to chat with our employment advisor about getting in to work
  • thespicemanthespiceman Posts: 2,303Member Brian Blessed
    Hello @ulrichburke How are you?  Welcome to the community.  I am reading your story what you have been through.  Thank you for sharing I want you to know you will find friends on here.  Glad to meet you.  I hope and understand your situation and I can understand how painful it must be write and talk about what you have been though.  I have met people on this forum who I think are amazing and fantastic.  I know I have had a hard life and can identify what you are going though.  You have my support and best wishes.  Nobody knows but you how you feel.  I joined this forum in summer and use this to express how I feel.  I just hope and pray that you take care my good friend you are not alone.  Hope to speak to you soon.
  • Neil2017Neil2017 Posts: 158Member Talkative
    Hi @ulrichburke
    Thanks for sharing your story and what you have been through in life. The positive of your story is that your still here to tell it and that you attempt to keep trying and I hope you will still. It is difficult at times to pick yourself up and continue specially if people keep putting you down or have a can’t do rather than a can do attitude.

     I can empathise with some of what you say including being pushed out of social groups even before I had attended an event.

    i am fairly new to this group but it seems very helpful and supportive. I hope you make positive inroads in 2018. I try to keep being positive and striving onwards, but it is very trying if not exhausting at times.

    onwards and upwards in 2018 
  • ulrichburkeulrichburke Posts: 11Member Whisperer
    Dear Everyone.

    Thankyou for your lovely, encouraging replies! Roll on 2018.  

    Neil, I'm sorry you've had the 'pushed out of groups' experiences too, I found them REALLY disheartening. And frustrating, it was after one of those I did the initial rant!  And thanks for your empathy, Spiceman.  It means a lot to me.

    I'm sure somewhere on this - I'm not the world's best on websites - thee was someone asking me to show them where you're charged for being a volunteer.  I can, it's on the site, it's here....

    https://www.scope.org.uk/support/services/our-approach

    It's the bit which I understand NOW but didn't  when I first saw it, that talks about 'buying services'.  I didn't understand  that going up and volunteering to  do things counted as buying services. So I went up, said I wanted to help, asked what I could do. They asked me what I'd like to do and gave me a list of things and I was like 'YES!! FINALLY, I'VE FOUND SOMEWHERE I CAN VOLUNTEER!!' And I chose a couple of things from the list, went along all happy to help out and got hit with a bill after the first couple of weeks.  I'd  been going along cos I wanted to help THEM, they let me join in, I thought I was helping them - then they charged me for the privilege afterwards, saying I was 'buying a service'.  How is offering to help 'buying a service'?  The bill didn't get paid and Care Co-ops - nothing to do with Scope but another Brighton charity - then proceeded to pull the exact same fast one on me. I didn't pay them either - I don't see why I should pay to help out - and I've Learned!  

    Watch out for that one, dunno if Scope and Care Co-ops are the only ones doing it but that's a schneaky! 

    The above's going back awhiles, since then I've been looking for real voluntary work, the kind you DON'T have to pay for, and had absolutely zero luck. No references, you see, I've none whatsoever. The few people who did try me out at stuff used to say I did OK but they're all long gone into Time's mists. I've tried doing things for people off my own bat - converting forms, doing leaflets etc. - to prove I CAN, they keep the forms/leaflets, dump the Chris. Anyone want proof of the above, gimme a form/leaflet to do and I'll do it, free,  just to show I  can. Even if it's just a dummy one. Go on, someone, call my bluff! You'll get an online-fillable form out of it in one of 2 ways - either as a fillable .PDF that could just be E_mailed out and back or as a centralised form that sends info. to a spreadsheet/database online. Leaflets - can do all kinda designs. Not saying I'm the hottest designer out there but I'm good at working WITH people to get what they want, they're free to turn my stuff down, but at least I can show I'm not ENTIRELY useless! 

    As far as employment advisors go - I presume they're another service that's charged for - it depends on cost. With my record, if it's going to be months of searching for something that only gets me what I get on benefits but I'm paying ££££ for  the search, I might have to beg off - I'm seriously trying to save up for stuff and it's just after Christmas! 

    I know I can get 'permitted work', but it's the totally no references that's the problem, or seems to be. I'm 'up for' doing Vol. Work at Scope, as long as I'm not paying for the privilege, same with anything else.And I'm 'up for' talking to people as long as I'm not paying big bucks for the conversation. It's not I'm 'mean' or 'tight', I just  can't afford to pay out ££££ for stuff right now.

    Lastly -  and I bet this gets a mod. yelling at me! - anyone noticed the pictures on this site? The site says it's trying to make the playing field more even but every picture I've noticed so far is a Smiling Able - bodied Guy looking after Poor Disabled People.  No pictures of disabled people helping other disabled people, or - God forbid - disabled people looking after able-bodied people! Surely if this WAS a site promoting true equality there'd be prominent examples of all three? 

    If anyone wants to rub my nose in the examples I've missed, feel free.....

    Thanks for all the replies.

    Yours respectfully

    Chris.
  • CockneyRebelCockneyRebel Posts: 3,874Member, Community champion Brian Blessed
    Hi Chris

    I am reading your story with great sorrow that we as a society can treat you so badly.

    I am in no way calling your bluff but possibly one usefull form you could produce is a PIP2 form, for practice purpose only, that can be filled in on line. Many people struggle with this form and a saveable practice form that can be altered until right then copied to the submittable form could be of great use

    CR
    Be all you can be, make  every day count. Namaste
  • Neil2017Neil2017 Posts: 158Member Talkative
    Hello Chris ( @ulrichburke )

    Great to hear how you are making some progress. Best of luck with your volunteering.

    With regards to your concerns about being charged for a lot of services from Scope am not sure your getting the full picture. I believe some services from charities are totally free depending on assessment of your overall household income. Example you could in theory be disabled and have a partner working either part-time or full-time.

    Another form of “income” as I understand it is called Direct Payments. I believe if your local authority or council assesses you and believes you are entitled to some services for your disability, your supposed to have the right to chose who supplies this service. Example you could have your council provide something or you could chose a charity like Scope or a private organisation.

    So would enquire more with Scope what services you would like to use and how it is supplied.

    i have never heard that you have to pay a fee with any charity in order to work either voluntary or paid with them.

    All the best. And be good to hear how it goes.
  • ulrichburkeulrichburke Posts: 11Member Whisperer
    Dear Cockney Rebel. What I'm doing with the form is re-doing it as a fillable PDF, putting it up on a downloading site (you won't have to join anything/pay anything to download it, it'll be a totally free site, it's Mediafire) and people can download it and practice filling it in to their heart's content. Why am I doing it like that? Prob. with the online fillables is they're expecting the info. to actually GO somewhere after you've entered it, so they howl at you for E_mail addresses to send stuff to, or you have to setup a database for the data to go to, and as it's not live data - you're only practicing - seems a bit pointless. Anyone will be able to download a free fillable PDF copy and type in its boxes/use checkboxes/ whichever's appropriate at any given point (haven't read it all the way through yet!) I'm looking forwards to doing this! Should be done by early next week! Chris.
  • CockneyRebelCockneyRebel Posts: 3,874Member, Community champion Brian Blessed
    LOL Chris
    I am a technophobe so much of that is over my head. I hope you didn't mind the suggestion as I hope many people will find it a useful tool

    CR
    Be all you can be, make  every day count. Namaste
  • thespicemanthespiceman Posts: 2,303Member Brian Blessed
    Hello @ulrichburke ; How are you I see reading your piece on Volunteering.  This is something I am afraid is out there every one.  I have stopped volunteering used to do Christmas once a while.  Thought have another look.  Costs well wanted £30 admin fee they call it.  Covers costs toward helping those at Christmas who arrive at the centre for hot meal etc.  I thought hang on yes do not mind helping homeless and the rest but is not the costs being covered by the charities concerned.  I wondered about this.  I am not self centered or selfish and have made donations before.  One time along time ago did tin rattling on the streets.  Then one day sat next to a young couple on the bus.  Who eventually transpired got paid by the charity concerned to do this.  I said I am not getting paid but I found out was the only one doing it for nothing.  Then shocked when I asked the same day donation for the fuel by the driver.  Yes I will pay is that to cover there costs the charity are paying them to do this.  Took out a fiver remember I was on a low income and not much of benefits at the time.  Others were not paying I was told not enough.  I ended up shocked , stunned, bewildered, by it all.  Since then there are afraid charities out there .  If you want help they will assess you and expect you to pay for services.  Simple things wanted to do painting and drawing set fee but a guy came around asking for more.  Bully boy tactics sorry for language but I had to cough up more.  Spending too much to do activities stopped the lot.  Not because I wanted to the rising costs and the set fees.  I paid nearly £10 for painting and drawing for a charity.  Then wanted more.  I suggested that they put tins around the centre and people will fill them up.  If a polite notice attached saying the reason why.  This charity already had people out fundraising and now expected us mere mortals to pay more.  Cost me around £20 for fuel to get there and back.  I am lonely and trying to help my self.  So I even found out a lot of the people doing the course had been retired.  Had good pensions and could afford it.  The extra and being generous.  I even bought in tea, biscuits, coffee no one said thank you.  My mental health charity that I left now charging for visits and mileage plus carpark fees to the clients they visit.  Any thing now is not free my friend.  You have to look between the lines.  As some one says Direct Payments plus most councils are evaluating services now.  I would like to say I did and do enjoy volunteering but there are limits and found myself being aware of what is going on.  Hope you ok and I do understand.  Please take care nice to talk to you.
  • VioletFennVioletFenn Posts: 123Member Chatterbox
    Hi @ulrichburke

    Firstly, I am really sorry that I haven't replied to this sooner - I appear to have a real issue with not seeing notifications, I'll look into it. 

    Secondly, well. What a struggle you've had, to say the very least. I'm ashamed and horrified that anyone should be made to feel like you have in this day and age, I honestly am. 

    I've never heard of the 'pay to volunteer' thing before - @Sam_Scope  do you know anything about this? It just sounds awful and bizarre.

    Obviously I'm going to struggle to give any practical advice, because you appear to have already tried most of the things I could suggest. I do think that online communities such as this one can be a lifeline, and enable friendships (and even potential volunteering contacts etc) to build in a way that they never do offline.

    If nothing else, chatting to people online will give a broader view of what's out there - and hopefully prove that not everyone's quite a terrible as those you've met so far. 

    It's obviously been a while since you originally posted this - how are things at the moment? 

    Violet
    ASD advisor, Scope
  • JennysDadJennysDad Posts: 2,179Member Chatterbox
    Hi Chris, @ulrichburke ; I've only just found your post - think it began before I became a member here. I wish it was possible to disbelieve it - it ought to be unbelievable, but it's not. This is the crap world we've built.
    So talk to me, Chris, if you can. I am hoping very much that you and I can be friends.
    Richard

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