Getting people PAST the disability to give me a CHANCE at anything! — Scope | Disability forum
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Getting people PAST the disability to give me a CHANCE at anything!

ulrichburke
ulrichburke Community member Posts: 30 Courageous
edited November 2018 in Autism and neurodiversity
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.

Comments

  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,671 Disability Gamechanger
    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
    Scope
    Senior online community officer
  • thespiceman
    thespiceman Community member Posts: 6,388 Disability Gamechanger
    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.
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Neil2017
    Neil2017 Community member Posts: 155 Courageous
    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 
  • ulrichburke
    ulrichburke Community member Posts: 30 Courageous
    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.
  • CockneyRebel
    CockneyRebel Community member Posts: 5,209 Disability Gamechanger
    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
  • Neil2017
    Neil2017 Community member Posts: 155 Courageous
    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.
  • ulrichburke
    ulrichburke Community member Posts: 30 Courageous
    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.
  • CockneyRebel
    CockneyRebel Community member Posts: 5,209 Disability Gamechanger
    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
  • thespiceman
    thespiceman Community member Posts: 6,388 Disability Gamechanger
    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.
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • VioletFenn
    VioletFenn Community member Posts: 124 Pioneering
    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
  • JennysDad
    JennysDad Community member Posts: 2,299 Disability Gamechanger
    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 **** 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

  • ulrichburke
    ulrichburke Community member Posts: 30 Courageous
    edited November 2018
    Dear Richard. 

    Sorry for the very long delay, hadn't been back here for ages, hadn't realised anyone had read what I'd put.

    Could do with a friend ATM, TBH (just proving my expertise in Internet speak!) Mom's dying.  Caroline - only sister - never let me be as close to them as a family as I wanted to be, always been in floods of tears over that, am now, I really didn't want to be the failure they all told me I would be but, like someone else here I've just read, I've applied for hundreds of things and been turned down for the lot.  And I know why. Disability is the last bastion of prejudice.  Don't give a woman a job and you're headlines. Don't give a spazz a job and nobody gives a monkey's!  I've got 16 GOOD quals., 5 disabilities, no job, you know the rest of my story.

    Saved up money to get Caroline and Mom a GOOD Christmas, got it all stolen off me by people I thought were local friends. Like the guy who got admitted to Berklee I love writing music, though I couldn't ever afford a course like his! The money I'd saved was to fund me a local teacher as well as Christmas - had to cancel him - but I've learned I will be getting PIP so when that comes through I'll see if he's still around. 

    I write New Age/Relaxation music, could I show you a piece sometime? Don't know how good it is but I've learned a LOT through just doing it and watching YouTube vids., so it's improving.  Could totally do with talking to an expert about the technical side of production, it's just if you try using forums, you really need virtually to know the answer before you ask the question.  "WAAHHH!!!! I'VE TRIED THIS MIX 248 TIMES AND IT STILL SOUNDS S**TE, WHY!?!?!" isn't answerable.  Dissecting it down and looking up the answer to each sub-problem IS - as long as you've guessed the sub-probs. correctly and are not looking up the right answers to the wrong questions. Which I often AM!

    Love to get an answer. I hope they swallow this - I'm [email address removed by moderator] if you want to answer and if it's OK I'd love to send you something.  If not, that's fair enough too.

    Hoping to hear from you

    Yours respectfully

    Chris.
  • thespiceman
    thespiceman Community member Posts: 6,388 Disability Gamechanger
    Hello @ulrichburke Pleased to meet you again. Sorry what has happened.

    I know and often do look for members of our community. Who have so many issues and problems. Often the stories resonate with me. I am always amazed at how and why some people like me and you end up being hurt by people whom we trust and care about.

    Be there and offer what I can. As a friend and be there if I can offer any advice.

    I can identify what you are going through because I had similar as I said before

    One thing you mentioned this is about you is the family you have.  This is difficult to deal with and I can see and feel a lot of upset.

    All I can add having been there and now live alone.

    My concern is you at the moment, your mental health and well being.

    Have you considered just a suggestion looking on line for some support.

    Understands all the qualifications, knowledge and experience. Found my vocation on line. Being here as  community champion.

    You have a lot of talent, skills , expertise and knowledge but is finding how you fit in to the working life that you desire.

    Maybe sitting with a notepad and looking for avenues where that you will be accepted. I know SCOPE could help with this I am sure.  Going on line and finding organisations, societies that you could and know probably accept you.

    This is me got a two or three page CV know now that an old boys networks, all white and organisations of none disabled . Do not want to know.

    Trust me, have been there so many times.

    What I do know there are companies out here who have the need for your talents and skills.

    For an example .  The skill you have mixing music and doing all that there are all the time companies being set up.  These are people newly disabled or have been in the services injured or have conditions, illness.

    It is finding them, going on line finding and doing the time. Understand all about what you wish to simply do. Have a life but is finding now looking and being the important person you.

    Small steps.  Perhaps employing the services of a job or life coach can be useful.  I do not have all the answers but I do know you have come to the forum and we as a community can help.

    I hope I have helped.  Great to meet you again please if you wish to have a friend. I am always here anytime.

    Pleasure to meet you.


    Take care

    @thespiceman


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    Oh @ulrichburke, I'm so sorry to hear about you and your family have been enduring recently. It sounds like it's been a really tough time. Our thoughts are with you.

    I'm glad to see @thespiceman's been in touch and offered some good advice and kind words. Are you looking for work at the moment?
  • ulrichburke
    ulrichburke Community member Posts: 30 Courageous
    Dear Spiceman.

    Why don't Scope want people to give out E_mails, how controlling is THAT? Shows me you can't REALLY trust this lot, and yes I know a mod'll read this, because if they REALLY wanted people to make friends they wouldn't want to be control freaks, would they, and play Big Brother all the time. 

    I'd love to call you a friend, never had one, could do with one.  I've tried to be others' friend many times, they always end up shafting you, usually they're setting you up TO shaft you, so all I can do is hope you're really on my side.  Thanks for being understanding about my family.  Mom's always been the best, it's Caroline and Dad who were always the problem.  Caroline was always Dad's girl and neither of them could stand disability, mine or others', so having a disabled brother was something Caroline never really understood.  I think 'hated' is too strong. It's more as though I was a different species, one that didn't really belong in the same clan. 

    Sometimes I feel like I should have done far more for them. Then I remember constantly offering and constantly being turned down and not knowing what else I could've done. You can't force yourself on others, can you, you can only offer. 

    I don't REALLY have any skill in mixing music because my setup's totally MIDI.  I'm sorry if you know the following but, incase you don't - MIDI means - not the initials themselves, but what it's come to mean as a word - using plugins for all sounds/instruments. The MIDI codes control the sounds, playback, volume, intensity (velocity) the lot. Mixing using soundfiles - instruments played by people - is a totally different skill and one I'm honestly not good at, hence trying to get a few flamin' lessons for years. (NEARLY did recently, then I had the money stolen!) Prob. IS - not all virtual instruments obey all MIDI codes. They SHOULD do, but the freebie ones are a bit hit'n'miss. Soundfonts - a smartphone's ringtone is a soundfont, a loop of one sound - ARE all MIDI controllable so I use those - there's a bit more to them than a ringtone but basically they're the same. There's a bunch of REALLY good ones out there now and I've got 8gig of them!! But that's all I know, TBH.

    I've still gotten the skills at Programming I was taught. Thing IS - they're a bit whiskery these days because programming's moved on a lot. And I really wanted to get in on the ground floor of Computing, but the companies never wanted to know me despite the quals. But for sure I can do Visual Basic macros and stuff, that's similar enough to what I was taught.  I know basic Python, but I've tried asking forums about the - to me - more advanced stuff and you just get snide, joke answers, or the few that try to be helpful only deepen the mysteries with their answers even though they're not meaning to. Besides, if you're not working towards a goal, you're not really practicing because practice is a dart, must have a target. General Computing - I know my theory, never had the chance to put any of it into practice. But if you want a ton of free storage, free VPN, internet speeders, anything like that, I know and use them all (On XP, my music software won't work on anything else so I stick to that.)

    Yup - I know XP's out of date but at least everything WORKS on it.  7 - 70% works.  8 - forget it! 10 - you have to rebuy everything 64bit, forget the emulation, the moment a file/prog. gets out of the emulation 'box', everything crashes.  But I know enterprise theory, using computers as servers, anything like that. Had moderate experience with it all, like I've used my old, warpspeed computer as a server till it got stolen from my old flat.  Was great while it lasted. 2nd hand Alienware, overclocked to the limit, 3 fans and a water-cooler, row of BIG hard drives. Great fun.  I'm getting my PIP - YAAAYYYY!!!! - so I might have another crack at one of those.  Even though I can talk the talk, you chuck a modern, Win 10 server at me and ask to link it up and it would be trial and error still because I've never had the chance to do it under tutelage. Reality never matches textbooks!

    If the control freak mods'll allow it, I'd love to show you a piece of music or something.  If they WON'T, because they want to keep everyone locked into this little world where they can keep their eyes on us, then I won't be able to.  But sheesh!!

    Yours in friendship

    Chris.
  • pee14
    pee14 Community member Posts: 172 Courageous
    edited November 2018
    @ulrichburke Godbless you Chris you are in my thoughts x
  • thespiceman
    thespiceman Community member Posts: 6,388 Disability Gamechanger
    Hello @ulrichburke Thanks for reply.   The reason we the community have the rules. I know you want some one to talk to.

    Please I can understand the pain, anguish and anger.

    We have levels up to above 25 you can private message me. This is something I would like to do. 

    Your at 14 so some way to go.  So if and when this level gets to past 25 get notified and then you can Private Message me . Is that OK.?

    Once your past that this Private Message service is excellent . We can talk all the time you want.  Night and day continuous.

    I know all about losing friends and having no body. Trust is the big issues, having been through loads of mate crime and the rest.

    I know my family the same I always I was alone with all of that. Now realise coming on to this forum am not alone.

    Reason I come on here is to help my self and most importantly help others.

    Love my community and the people in it.  Make a loads of new friends. At least I know I can rely on them.

    My concern is the skills and attributes the qualifications you have. I am on a learning very much education here have no knowledge.

    I do and would be prepared to take some time out to look at what is available on line for you. Want to do as I have said it is what you want to do.

    Know and do know it is finding the right support, information what you need to search for.

    My story is simple do know and have known now have got a lot to offer but if you keep going up a hill. Against a brick wall with your work story.

    Getting nowhere then you need to look at other avenues and alleyways.

    There are companies run and by disabled people.  Also those with various conditions and illness.

    It is finding that. How they and you come to an agreement. In finding a right way to proceed.

    You say want to do programming, how about teaching others like me who are disabled, mentally ill more on line .  Have some time.

    Just a suggestion.  Not in a classroom setting but on line.

    I have loads of Business Admin Qualifications but turned against that to look at something else.  Into my lifestyle, diet and looking at health.  After addiction. Yes I failed to find anything but used the knowledge learnt to adapt my skills to others.

    Like here if I can so how can I be a friend and is there anything I assist with ?.

    Everyday to me is a new day so I do what I can to my community members.

    All I ask please do not shout at me. Use Capitals or swear.

    The past is the past we keep hurting ourselves every day. I know if this is spinning around in my head all day, the pain, depression, misery and hurt. I am going to consider relapsing with the drugs and drink, mainly the booze so I have to think ahead. Be a survivor.

    I have walked a mile in your shoes and am always here to help, be supportive.

    Ready to listen anytime. One thing else one day wrote all what has happened to me. A phycologist suggested it.  Took me about couple of months. Then she said shred the lot.

    Never felt so good and then yes I hacked all everything about my past into a skip and started again.  Clothes, old photos, mementoes, School reports, old numbers of former friends who never call.  Even Kitchen Equipment, TV and furnishings from several houses I rented in. Diaries and lots more.

    Have an outhouse of tat and rubbish and now again to the tip.  Have a rethink about you. 

    Got new haircut, new clothes I felt comfortable in. Had and still do change my lifestyle and diet all the time.

    Now and feel great. Have a memories which I still resonate but here getting further way all going.

    On this forum say bits and pieces. 

    Guess what like my new life. I did the right thing.

    Got to say to you. Wish the best look forward to seeing and hoping you will reply. Also sometimes it is listening to you and what is best for you.

    Please keep in touch.

    Take care

    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    edited November 2018
    Hi @ulrichburke, thanks for sharing this. The community team remove private contact details such as mobile numbers and email addresses to ensure the privacy of members. This is a public forum and so we do this to keep members as safe and supportive as possible. You can see our community house rules here.

    As @thespiceman says, you can communicate with others via private message: this community guide explains more about that process. If you have any further comments or questions about this, do feel free to get in touch at community@scope.org.uk.
  • ulrichburke
    ulrichburke Community member Posts: 30 Courageous
    Dear Spiceman and all.

    F'starters, I don't shout at anyone - it's counter-productive.  Calling someone names or yelling doesn't do anything to help whatever the problem or situation is, it just makes both sides end up feeling bad. 

    Secondly- sorry I didn't find these lovely answers earlier, I'd no idea they were here.  Thankyou all for them. 

    Thirdly - I'm 54.  In all those years, I've never had friends over anywhere I've lived partially because of the Asperger's - I've no idea how to tell who's really a friend and who's just out to rob your stuff and I've had hundreds of pounds, if not more, of stuff and money stolen over the years.  Probably far higher than that.  I've tried for jobs, voluntary and otherwise, non-stop - not so much recently, true, cos I'm flat outta ideas right now, but just about non-stop - all that time and nobody ever lets you have any because you're disabled.  Disability is the last bastion of prejudice.  'Because you're black' = wrong, 'Because you're disabled' = acceptable (to neurotypicals.)  In America, hundreds of disabled people get shot by the police every year.  You never hear about any of it. 

    The main reason I don't have friends is cos I'm too ugly.  People tell me this.  I love writing music, wanted to learn how to write it better so tried getting myself a teacher.  Had a few come over once, tell me I don't have enough equipment (I DO, but it's all software, not hardware.  Software's cheaper and easier to replace when your stuff gets stolen.) and vanish again.  Then I had one guy a couple of weeks ago tell me he really liked what I wrote and would love to give me lessons.  Never felt happier.  He came over once, wouldn't come over again.  Reason? He was scared of catching 'whatever you've got' and giving it to his girlfriend. 

    I've got Cerebral Palsy, Hydrocephalus and Asperger's.  Last I heard, none of them were communicable diseases. 

    Thing IS - losing this teacher who actually liked my stuff has really hit me hard.  I've got a learning disability - think it goes along with the Asperger's - that means I need walking through stuff to understand it.  Everything's basically repetition.  You get shown what to do to get the result you need and know when you do it, that's the result you'll get.  I can't learn from online videos. I've really tried. My results are never within a mile of theirs and I never work out why.  But walk me through something and I'll understand and learn, because I can ask you questions. You can't ask a video questions!

    Went out today, feeling really low after losing the teacher, and tried to join in with/help others. I love helping others, if I can.  All I got was scared looks, little hate-filled faces and people backing away. Same as always. Works wonders on a bus - the whole bus can be standing room only and you've got a double-seat to yourself because nobody will sit next to you.

    Came home and sat thinking about 54 years of never going out with people, having friends, going to Colleges and watching the others in after-class groups I never got to be in, sitting today and watching people in groups I'll never get to be in, kids looking at me 'What's that man doing, Mummy?'  'Don't look at people like that, they're Bad!' and being hustled away, all the other benches full, me on one by myself.... I get it just as bad from other disabled people.  Went round a corner not so long ago and there was a guy in a wheelchair against a wall.  'F'k me, mate, where's your spaceship?' 

    I really, really don't see the point of being here any longer.  What IS the point? I'm not doing any good.  Every time I try to volunteer, I get told 'you've not got any referees' (true, I've never known anyone, how can I have any referees?) or 'customers won't like looking at you' (had that one a BUNCH of times.)

    Since my sister's got a boyfriend, she won't have me over to her place any more.  She's always had problems with me being disabled, her b/f's the same. 

    I've got Asperger's, and zero experience of being with groups.  If someone tries to small-talk with me I can't do it, like you (maybe!) can't talk Sanskrit. If they try, I've no idea how to respond, they think I'm not wanting to talk and go.  I do want to talk/join in, more than they'll ever know. Asperger's feels like you're permanently in prison and nobody's got the key. 

    OK, I've sat and admitted to myself I'm useless and shouldn't be on this planet any more.  Thing IS - I've had useless forced upon me by other people.  Not all of them neuros, though most of them have been, other disabled people have played their part too (in 2 disability only colleges where everyone treated me exactly the same as neuros do, never got to join in anything once.  Ended up too scared to go into meals unless the single-person table was free.  One of the staff, bless him, saw this and gave me his Jean-Michel Jarre ticket.  Was the Concert on the Thames, never forgotten it.)

    But I promise you, I've tried as hard as I can to fit in and be part of things, it's just the more I try, the more I get rejected and I've reached the point where I can't take any more rejection. I know it'll sound silly to you but I'm trying not to let this music teacher be the last straw.  If he'd hated what I write and that's why he wouldn't teach me, fair enough (I suppose!) But he said I wrote really good stuff, he just didn't want to get 'whatever you've got'. 

    I'm the Elephant Man.  Everything that's happened to him in the movie has happened to me, probably more often. I always thought he chose the best way out.  Half a century of not being with groups, of being beaten up so often I had a documentary made about me, of not fitting in with other disabled people, no friendships or relationships, what the heck's to keep going for?

    I know I can't be the only one at this point - but it sure feels like it because I've got nobody to judge myself against.  Right now I'm just trying to find reasons to stay alive and there's not many of them.

    People never complain about my clothes or haircut - it's always and forever The Face.  'God you're a f'kin ugly mother....'  'Don't look at my kid, you f'kin paedo, I'll get your lights punched out'. 'What you lookin' at, you f'kin ****?' And so on, and when they don't say it you can see it in their faces.  Sometimes they try too hard to Be Sympathetic.  Was sitting at a bus stop the other day and, from nowhere, an Indian guy comes over to me, giving me a narrow-eyed, scared look, holds out his hand as though to shake hands so I, puzzled, held out mine too cos I didn't know what was going on.  He shook hands and there was a tenner in his hand.  He whispered 'Go on. Take it!' and went off before I could do anything!   Which might've been lovely of him but was again a reaction to How I Look.  The bus was full of schoolkids and they make schoolkids BIG these days.  Bunch surrounded me and accused me of getting that bus so I could look at their girls. 

    Please, where do I go from here?

    Yours respectfully

    Chris.
  • Tori_Scope
    Tori_Scope Scope Posts: 12,488 Disability Gamechanger
    Hi @ulrichburke :) It's good to hear from you, though I'm sorry to hear that things seem really tough for you at the moment.:smile:

    I've sent you an email from community@scope.org.uk, so please do keep an eye out for that. I wanted to reach out to you to see if we can support you.
     
    In the case of an emergency, including if you're having suicidal thoughts, please remember that you should call 999 or visit A&E right away.
     
    I'd also encourage you to speak to your GP about how your mental health has been lately, and the treatment you've been experiencing. Have you spoken to them recently?
     
    The following organisations are also there to support you: 
    • Samaritans: call 116 123, or email jo@samaritans.org
    • SHOUT: text SHOUT to 85258
    • CALM: call 0800 58 58 58, or use their live web chat, between 5pm to 12am
    You may also find the following resources helpful: 
    You mentioned in your comment that you've had a lot of money and items stolen from you, and that you're finding it hard to tell who's your friend, and who's not. This sounds really difficult to deal with. 
     
    Have you reported this theft to the police? You can do so by calling 999, 101, or using Report-It, which is an online reporting tool. 
     
    You may also find it helpful to contact:
    We also have a page on our website about disability discrimination, which you might find helpful to read.
     
    Do you mind me asking what your living situation is like? Do you live with anyone else, or do you live alone?
     
    If there's anything further we can do to support you, please just let us know :) 
    National Campaigns Officer, she/her

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