Done the surveys on your site and I'm a bit puzzled - your site MEANS well but, when it gets down to it, it's still a site for neurotypicals, not us neurodiverse. I suck at navigating websites so I'm just putting the bits that stand out in my memory - there was one page that asked 'What relation are you to the learning disabled person?' (or words to that effect, this is from memory) and there wasn't anywhere to say 'I AM the learning disabled person, so you were assuming anyone with a learning disability couldn't fill in that page of their own volition. And in your surveys, every question's got a list of virtually exactly the same answers. I didn't 'get' that. Why do you want the same answers to different questions? Your words are wonderful, all about wanting people to not bully us, to see us as we really are - but your site seems scarily neurotypically biased, as though you expect the dominating neurotypicals in our lives to be reading it, not us. And there's LOADS more, all aimed at neurotypicals, not at us.
It's a Mowgli site, written by wolves who don't....QUITE.... want to let us Mowglis into the pack. The Rakshas are THERE - but the wolves want to be in control too much to let them have the power to teach us how to join the pack. I get the feeling those lovely words were written by a couple of politician wolves, said to placate, not to integrate. Which is a real, real shame. Anyway.
I'm learning disabled, I have an official I.Q. of 68. With me it's one-sided, in English and Maths I'm 170-180, but then you get puzzles and maps and what-shape-comes-next and they all kill me down to 68! I've got Cerebral Palsy, Hydrocephalus, Dyspraxia and Asperger's, they come out in my face and make me look ugly - and that's all anyone ever sees. I'm 55 and I've never been with a group of people, or had friends, or jobs much, or volunteering jobs much (that's ANOTHER thing. You neurotypicals are total control freaks - you want to be the ones in charge of us AND doing all the vol. work. I've applied for every vol. job I can find over the years and been turned down for over 90% of them, no real reasons given. Purely coincidentally, of course, none of the others in the roles I applied for were learning disabled. Odd, that....!!)
But all I get, every day virtually, ad nauseam, is comments on how ugly I am. I go to see my g/f in her group home. 'Lucinda - Shrek's here....' 'Nah, it's Frankenstein's spare parts....' 'Wanna real man, Lucinda? I'm free!' So she seldom has me round there - she has to live with them. (Yup - that's the other inmates, you'd think they'd know better.) Tried to join an Asperger's group in Brighton where I live. Went there 3 times, got kicked out by the neurotypical leader after the third visit with the mysterious comment 'I don't want you infesting our group.' I'd barely even said anything! Tried volunteering for Buddy's in Worthing. Kitchen, nope, knives, might go Jason Voorhees on them. Office, lady took one look, grabbed all the paperwork, ran back in the office, slammed the door! Book stall they ran to raise money? Went along there 'Nope, we're fine dear, you run along and play with your little friends.' I was 48 at the time! Charity shop? Nope - the other customers wouldn't like looking at me, their words.
And so it goes on. On the bus, few nights ago 'Eurgh. Look at that f'kin repulsive spastic in the corner'. And the lady's b'f gobbed in my face. Passing a guy with a pram. 'Don't look at my kid.... You've started him crying. Should punch your effin' lights out for that.' On a bus with schoolkids - they make 'em BIG these days. 'You come to look at our girls, you effin' perv?' Walking along the road - occasional gasps, wide-eyed looks, people dancing out of the way... Thought I had friends in a bar, I go in, landlord says 'Finish your drink and go.' So I look at the others. They won't look back at me. Then one of the women stands up. 'At least we won't have to look at you any more. Why don't you stick with your own kind?' The Pier? Banned - apparently my face scares the tourists (King Kong told me that and he's NOT a bouncer to argue with, believe!)
Wetherspoons? Man comes up with a bouncer. 'I've not come in here to look at Frankenstein all afternoon, either you bounce him or I will.' I rearranged the bouncer's nose, they got me in the gutter and kicked the absolute bejeezus outta me!
Multiply that by 55 years and that's been my experience of life so far. But even with you neurotypicals it can't ALWAYS be like that for us, can it? Or do you always treat us neurodiverse like that?
If not - why's everyone got it in for me? And what can I do about it? I've frankly totally had enough of it all. Gotta be more to life than the above, no? I watch people in groups, with friends, going to be with friends, in bars talking to eachother - I've never once done any of it. And I try to be nice to everyone. The very, very rare occasions I get a shot, I don't know how to handle it. Imagine you've always loved fighter planes. You've read all about them, all about how the controls work, all the navigation. Then someone says, out of the blue, 'There's one over there. Go fly it.' Just because you'd read all about it, you wouldn't be able to ACTUALLY fly it, would you? So you'd get out and all the expert pilots filling the field would be going 'We gave you your shot and you blew it. Go away!'
That's how I feel, totally, when I've had my incredibly few and rare chances to be with groups. All the others are experts, I'm not. But I want to learn. I just have no-one to teach me.
Do you know anyone who could teach me how to fit in with groups well enough to be given a shot at DOING/LEARNING things? A Raksha for the Mowgli writing this? I'm rapidly reaching a point where I just don't wanna be here no more but I'm prepared to give it one last shot if I can get a bit of help - I've got the guy downstairs trying to get me kicked out of the flats I'm in 'Why should I have to share a house with that f'in weirdo? I'm gonna get you out on the streets where you belong.' And a photographer took pictures of me for a book he's preparing on Brighton Oddities! Not too sure how I feel on that one!
There's gotta be more to life than being rejected for everything, beaten up, robbed and, through lack of experience and knowledge, blowing the rare chances I've had to join in, hasn't there? (And I don't mean being taken by a bunch of neurotypicals, sat in an old church with other neurodiverse and being given colouring-in books and photomontage books to do all day! They tried me with that one, I set up a website so people could do it online - and they wouldn't let me teach the others how to use the website! WHY!?!?!)
Please answer this honestly. I'm learning-disabled, yes. But I'm not bad at understanding if people explain things to me and not just ASSUME I can't understand things BECAUSE I'm learning disabled. If I don't understand something, I'll ask!
Yours respectfully
Chris.
Written by
ulrichburke
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Your acerbic wit, intelligence, insight into the patronizing by neurotypical do-gooders, brutal cruelty of the ignorant, scared and uneducated, increasing marginalizing by those in power is unerringly spot on. You waiver between despair and hope. Your numerous times of getting knocked down(literally and metaphorically) and getting back up again shows a man of courage, belief in something better ahead and bloody mindedness. I think you are a breath of fresh air. Your voice could be powerful if given an opportunity and the right forum/environment. Take your griping on the road. Be behind the mike as a tour de force. A man on a mission with candour and harsh reality hitting the complacent, smug, ignorant and cruel between the eyes. As a comedian a powerful message can reach myriad groups. Educate the masses. There's a mission/ role you and highly qualified for. Stories based on truth and given the twist of cynicism you have in spades is a superpower. Allow the laughter the reality at discrimination and injustice filters in as a secondary response. This is the ingredients that will bring forth the much much needed change.
Hi Chris. I am not great with words but just wanted to say I absolutely agree with what Michele has written.
If you are on Twitter you might want to follow Simon Aspis @SFAactive. She campaigns about neurotypical people, mainly parents, shouting over the voices of neurodiverse people. She shares your views about surveys and Mencap.
Wow I think your inspiring, I'm absolutely discusted at how you have been treated by what you've described. Well I really think with your knowledge & lived experiences, you would be a Fantastic Book, Ebook, voice etc for Nerodivergeants. Nerotypicals & uncaring People need to Change, I'm so sorry you've been treated so badly, but in Or of your Resilience & pushing forwards, your a Good, strong person, I truly feel you need to be Heard & people need to hear you & on Large Scale, you have So Much you could teach. Bless you & wish you Good People to surround you.
Hi Chris, I'm just messaging to say I echo what Michele & Speedy have said.
Eloquent, persuasive & fluent, you sir have an amazing talent to write.....have you ever considered writing??? An autobiography maybe?
The area I live seems to be much more inclusive & accepting than it sounds like your area is. I feel the humans where you live have caused you to undervalue oneself, but there will be someone that would give you that helping hand, the guidance you desire to navigate a world where you have a social circle, don't give up looking & you will find them.
Do you have family that would help in some form?
Take care Chris, I know it feels like a world of people pushing you out, but there are many more people that are good than bad. Sometimes people just need a bit of educating - I think you would make a good teacher raising awareness around the real day to day life of being learning disabled & the ignorance of many.
I agree with what has been said - you need to get the word out to show you as a person - this is probably a rubbish idea but what about doing some YouTube videos about what you have experienced? Shining a light on how people treat neurodiverse people. I'd say tiktok but I know nothing about it. Try and educate people. And I am sorry how you have been treated.
HiWrite a book! Blog (not 100% sure how you do that as im totally useless with computer), Twitter etc as you have so much to offer!
Your writing style, expression and words are very readable (if that's a word).
My daughter is 28 yrs old and I would love her to be in a world where she was accepted in her own right not as someone to be on the receiving end of ,well intentioned, charities. Not knocking charities but for her to be doing the volunteering.
I know most things would be beyond her capabilities but there are others,such as yourself, that are more than capable of being on the shop floor etc.
Please don't give up, you are an amazing, thoughtful person and I hope that you find that not everyone is a horrible person and there are some decent people,like yourself, out there.
Hello ulrichburke , thanks for your message and feedback on the Mencap website and survey. I work for Mencap and I'd be interested to know what survey it is you've mentioned, as I think what you've said would be really useful for the team who put it together to be aware of your points for future. Are you able to share the link to the survey with me so I can take a look at this please?
We're currently working on a major update to the website with the aim to make it as accessible as possible for people with a learning disability - recently we've made some improvements with a new Easy Read page type, and a feature that provides definitions to certain words to help people understand the information on the site. We've got lots more changes planned as well!
We do have a wide range of people who use our website alongside people with a learning disability, including health and social care professionals, academic researchers, parents, and carers. We aim to create accessible information to go with some of the more complicated information, but if there were things that you thought could do with improving I'd be interested to hear about it, as well as any feedback about the navigation that you mention.
I am sorry to read about some of your negative experiences - it happens all too often and is simply unacceptable for people to discriminate in the way you describe. I know that our campaigns team are always interested to hear from people who are willing to share their story to raise awareness of the prejudice that people with a learning disability still face every day. Would you be interested in finding out more about this? Please feel free to send me a direct message using the chat on Health Unlocked if you'd rather do this privately.
If you ever feel you need support, help or advice, our Learning Disability Helpline is there - you can reach our trained advisers on 0808 808 1111 or by email on helpline@mencap.org.uk if you prefer.
First of all you start off with a para. of your Speech to the Neurotypicals. Then you ask 'how does it make you feel' and that's followed by 'what does it make you want to do'. It's THOSE answers that are always the same, have a look.... (inserted the pic. and it came out above the text, sod's law, that!) I mean - if you want ed just one set of answers, why do them on separate pages? Why not just do the full blurb and say 'how does it make you feel' (answers list) then 'what does it make you want to do' (above answers list) - as they're all the same, why do you want so much reiteration?
I've sent you an E_mail on the other prob. - you've got rollovers all over the site, words which, when rolled over, come up with info. boxes. Most of the info. boxes get hidden under graphics, which tells me you've got your layering wrong. You've got to test the rollovers out and move the offending graphics BACK a layer, so the rollovers come out on top and are readable. And make sure the backgrounds in the rollover boxes ARE white and not just transparent on top of white textboxes, or the bits overlapping - for arguments sake - a green graphic aren't going to be as readable because they're black-on-dark-green. And as you're redoing the site - I've sent this in the E-mail too, but I'll put it here.
Am happy to go back through the site and track all these down again but there's LOTS of questions that are SOOO neurotypical. Like on one page 'What relation are you to the disabled person?' (that;'s from memory but it's definitely words to that effect.) NOWHERE does it let you say 'I AM the disabled person.' It ASSUMES that if you were disabled, you'd need someone to answer that page for you. My I.Q.'s 68 and I could understand that page - and all the others - fine.
What I really feel you need here, and on similar sites, are Rakshas. Remember the Jungle Book? Raksha taught Mowgli how to be a wolf. How to think wolf and be wolf. If it hadn't been for her, Mowgli wouldn't have known how to converse with the wolves, run with them, be one of them. In fact, he'd've just been like one of us neurodiverse - I'm in that position every day! Could there be a 'Raksha page' on the new -look Mencap site, where we're given lessons in how to think/act neurotypical, at least enough so we can be ACCEPTED by your lot, not just TOLERATED by you? And those little videos that say 'Hi. I'm Fred. I have a learning disability....' (Or whatever name!) Who's told 'em that? A neurotypical teacher, after spending a few lessons burbling in front of a blackboard and discovering Fred's not 'getting it'?
Of course Fred isn't getting it. He's not been taught how to think 'neurotypical' yet. No Rakshas. So the teacher's got to go to him. And as he's neuroDIVERSE, the answers that fitted John, last week, aren't going to fit Fred. We're DIVERSE. Each one different. Each one unique.
So the only way to achieve commonality of understanding is by teaching us all Wolf. Er - Typicality. Via Rakshas. And the only way, I feel, for the Rakshas to do this is to think Venn Diagram. Us neurodiverse live in our own little worlds, without much overlap with others. It's safer that way - at least I feel safer that way, in mine. No idea how others feel, they're diverse. If a Raksha could spot the overlaps, and make them have appeal for us, with her guidance we'd have the courage to go into them. And learn How to Be a Neurotypical, enough at least to learn FROM you neurotypicals, not just blundering and gasping briefly in an alien world before running back to the safety of our own.
So instead of 'learning disabled', think 'teaching disabled'. The teaching methods each of us need are probably unique - but if we got shown how to 'think neurotypical', it would at least help us see what's going on.
That's what this neurodiverse guy feels anyway. I'm just speaking for myself, what I've seen in a lifetime of failed interactions between me and neurotypicals.
Please feel free to show it all to whomsoever you desire! Broadcast it from high towers!!
Wanted to give you another way of thinking of us, so you can t each us - here's the basic plobrem. The brain's shaped like a maze for a reason, I think, because there's many paths leading to the central goal of understanding. Neurotypical teachers are taught One Way to Lead, based on books generalising about all of us neurodiverse. Thing IS - the teacher'll have all of us behind him at the maze's start. Some of us will go down dead-end paths. We'll be able to hear him - but not get past the hedge at the path's end. And if we go back down the path, we'll not know which of all the other turnings to take to catch back up to him. Some of us will go down paths that, to us, are utterly logical, even if they're wrong. We'll end up in the wrong part of the maze. And a few of us will stick behind the teacher and still be with him when he hits the maze's centre. Those few will be given techie names amounting to 'Hey - he CAN LEARN stuff now.' Us others will be told 'You've got Severe Learning Difficulties' or the like. Thing IS....
We HAVE LEARNED. Maybe all the wrong things, but we HAVE LEARNED stuff. I bet if you give Fred a t ask, he'll get just as far with it every time before chucking it in frustration. Because what he's learned only takes him so far. Then he hits the gap in his dominoes. Surely there could be tests worked out to find where the gaps in the domino pictures are, so dominoes with the right bits of picture could be put in - andknock over more lines of the picture, giving Fred more of the picture to look at. When all the missing dominoes have been found and put in place, Fred will be able to knock over the first domino (the start of the task) and watch all the dominoes falling to complete the picture (the end of the task.) Because we're all neuroDIVERSE, we'll all have different dominoes missing. Have a bit of patience with us, let us show you where the gaps are and you'd be surprised what we can do for ourselves. Thing IS - and this is sad -
There's a LOT of neurotypicals out there who don't WANT us doing things for ourselves, because their paid-for job is to do things for us. So if we start being able to do more, they'll lose out. I've been in day centres where I've shown people how to - for instance - organise their wheelchair bags and use all the contents without waiting for a carer to do things for them and been taken to one side. 'Hey. Wotcha trying to do? Do me out of a job?' I gave her a sweet smile. 'If possible, YUP!' If we CAN do stuff, why not LET us? I feel, not always but often, there's this assumption Fred needs a carer when really, all he needs are the gaps in his domino pictures filled. If after that he still needs someone to help - like going round one of these lurvely supermarkets where all the staff are 7 feet tall and can easily reach the shelves this 5ft 10 shortass can't get close to - fair enough. But I've seen so many examples of one-size-fits-all teaching failing and the guy being called learning disabled because it's failed, NOT because they've tried to fill the gaps in his domino pictures....
I'm not saying we can learn everything. But then, neither can you - if you could, you wouldn't need to get a mechanic to fix your car because you didn't know how to do it! It's just - you're living in a world of one-size-fits-all. You wanna learn about us? You find an expert who's written A Book About Us - and try to use what he learned from one group of neuroDIVERSE on another group. And if it doesn't work, it's our fault for not learning, not your fault for not teaching us in a way each of us can individually understand.
Test what we do know. Find our domino gaps. Fill in the dominoes. Then let us push them over to see the full picture we've just created, our way, for our selves. And please - make us feel safe doing this, not worried our neurotypicals - carers and similar - will be cross with us cos we're now doing for ourselves things they're used to doing for us. I've been there with that one - but now, I've got no carers. Dumped the lot. Just MEEE!!
Lurve - for real - to know what you think of the domino idea. And feel free to show it to anyone you like, show anything I say to anyone you like! (Or to anyone you don't like, to snicker while they're bored to slumber....!!)
Thanks Chris, I've shared your feedback - I'm pleased to say that the web team should have fixed the depth problem you spotted on the glossary pop ups!
I've never heard the domino analogy before, but it does make a lot of sense. I think the biggest challenge for anyone who supports people with a learning disability/people who are neurodiverse is being allowed the time to truly get to know someone and work out what those missing dominoes are. And of course, that has to be done on an individual basis, one size most certainly does not fit all!
Wanna know what's even sadder? It's actually FASTER teaching someone using the domino theory than the one-size-fits-all methods neurytypicals want to use. Why's that?
Pretend you've got a class with a particularly diverse bunch of us lot in it. (I'm gonna be exaggerating a LEETLE here, but not much, I've been here quiiite a few times!) You're standing at your electronic blackboard, full of moving images transmitted by your nice powerful laptop on your desk, the images guaranteed by their neurotypical makers to Hold Our Interest - For Sure. Some of us are interested - but not Bert, he ruler-flicks bits of paper at Tom, who puts up with that for a bit then chucks something back. You go to break that up - and that breaks the attention of some of the others, who start yelling at Bert and Tom in what's fast becoming a long-distance fight. By the time you've calmed THAT down, the images on the board have moved on and everyone's forgotten what you were talking about anyway, probably including you!
Now pretend you set each individual a task to complete. You know what interests each of them, so you can tailor the task to each interest-set - it's essentially the same cup-of-tea, just sugared and milked to taste. As they're working on it, you're touring the desks and, if anyone's getting stuck (domino gaps) you can spot what they're getting stuck on, and why, and see how to bridge the gap. As you're doing it in camera - the word means secret, not taking pictures! - with each, they won't feel scared of getting laughed at by the others as they would if they'd had to hold their hand up and state their problem out loud in front of everyone. So it's a win-win. They get a gap in their dominoes bridged, you start understanding where, for that student, the gaps ARE. If you make a note of the gap you've just found, you can add it to an overall synopsis of that student FROM all the other teachers' notes on that student that'll help all the teachers, if he/she starts falling behind in any subject they'll know what the student finds hard to understand and how to bridge similar gaps in the particular subjects they teach. You're both filling domino gaps - the student in what they're trying to learn, you in your knowledge of how to teach them.
If a student tends to be unruly in one particular class, it's often to cover up the fact they're not following what's going on and they don't want to lose face amongst the others by saying so, so they try to deflect the teacher away from their lack of understanding by - purely for example - chucking something instead. If they know the teacher will help them without the others realising what's going on, because the others are all concentrating on their individualised tasks, and the learning goal is something they're truly interested in, don't you think they'd be more likely to concentrate on it? (I know you can probably chuck 300 trainees at me that 'prove' that idea won't work, all I'm saying is if you can bridge the gap between the subject and something they personally want to achieve, you'll have more chance of holding their interest. Domino-filling again!)
As an aside, could you neurotypicals PLEASE have a bit of patience with us? So often we sit and let you do things for us not because we can't do them, but because we know you won't give us the TIME to do them - you'd rather we sat like dolls and let you do them for us because it's faster for you and fits your needs more. Thing is - it means we don't get to practice, so we don't get to learn, so we end up believing we couldn't do it anyway. And.... (last thing!)
In these Group Homes you stick us in to keep us out of the way, and filled with medication we don't need just because it makes us more docile for you, could you organise more for us to do and learn? Help us become true communities, looking out for and after eachother, not creatures of terminal boredom watching you lot just sitting in your offices because you know you'll get paid regardless? Maurice_Mencap, I take it you're in England - I really think most of these Group Homes would benefit from the W.E.A. sending taster-teachers round, finding out what we can achieve and organising courses for us. Otherwise we spend most of our years as Prescribed Junkies when, given a chance, we could help make our own community as viable as you neurotypicals make yours.
Hey Chris, I’m so sorry to hear about how you’ve been treated and all your frustrations. I think people could learn a lot from your lived experiences and you really have a way with words, so I think you starting a blog or social media page to share your experiences could be great. Not just to vent your frustrations, but also to make people laugh and hopefully help work towards change regarding this cruel discrimination. I'm truly wishing you the best and hope that you'll consider more posts on here in the future, we're all here rooting for you and I think you're strong, resilient and an amazing writer.
you are very articulate. I have a diagnosed IQ of 69. No ASD. I haven’t faced any discrimination for having a LD but according to my staff when asked they say I come across as normal. I’m currently in Sri Lanka on holiday, I have no social barriers and talk to anybody. My local CLDT and supported living home have been very supportive of me going on holiday.
Dear Bob-Billy. Mine's about 68-69 too - but with a caveat. In straight English and Maths I'm 170. It's maps, pictures, puzzles that kill me - by the time they've finished with me, THEN I'm 68-69! So it's totally one-sided. Yet you get neurotypicals saying 'He's only got an I.Q. of 68-69, he'll never understand this....'
I've got a FEELING - love to know what you think of this bit - neurotypicals use I.Q. tests to legitimize keeping us out of their world. THEY'VE devised the tests, don't forget, as a specific means of seeing how well we can do in a world not designed for us. Heck, as a ridiculous example, if a bunch of fish devised tests for us.... 'Can he swim naked and breathe underwater? Nope? Eat plankton unaided? Nope? Sheesh, these human creatures are pretty dumb - WE can all do that from birth!'
Neurotypicals say 'He's only got an I.Q. of 69 - he wouldn't do well in our world - let's put him in a nice Group Home where he'll get everything done for him and we won't have to be bothered by him every day!' Don't you believe it. The challenge is NOT doing things the neurotypical way. The challenge is to see what the neurotypicals do that YOU want to do - then find your OWN WAY of doing it.
Dunno if I can possibly be any help to you doing the above - but I'm sure here to give it a try even if t he ideas I come up with end up being proven ridiculous - at least we'll know that, chuck one ridiculous idea out the window and take the next one out the box. Sooner or later we gotta find one that works, no?
Love to hear about Sri Lanka. Never been abroad, save once to America as a very young kid. All I remember about that is Mom, who was a famous artist and had an incredibly straight eye, going to a tenpin bowling alley for the first time in her life and man, she couldn't miss. Ten. Nine. Ten. Eight.... The whole alley came to a grinding, open-mouthed halt, watching this first-time tourist woman getting a monotonous row of near-perfect scores! Everyone there with a tenpin team dived at her after that, to sign her up!
Mom lurved being the absolute centre of attention for the evening, but she didn't sign up, we were only there 2 weeks. Checkout Brenda Burke Fine Art if you wanna see her stuff. Wish I could draw but it's my picture problem, I just can't do it. Feel a real failure because I'm her son and can't draw like she can.
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Oral health care and dental services - what do you think? 
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