The first thing you see on entering Heidi Crowter’s home is “Heidi’s Flat Rules” posted up on the wall.
– Please do not blaspheme or swear because I love God.
– Be kind to Heidi and have fun.
– Respect people’s differences.
– Respect my property.
Heidi, who is 23, is big on respect because she knows how it feels to be treated with a lack of it. When she was 16, she was trolled on social media for having Down’s syndrome. Photographs of her were copied from a parent support website, then posted on other Facebook pages where people with disabilities were mocked. The photograph of her was published with the caption “I can count to potato” (a quote from a film called The Ringer, in which a conman pretends to be mentally disabled in order to compete in the Special Olympics). Another Facebook page was illustrated with a picture of Heidi and captioned: “Lose your virginity to a retard.”
Heidi reacted in the only way she knew how – head on. She went on TV with her mother and sister, shamed the perpetrators and publicised the trolling of people with special needs.
Seven years on, Heidi lives independently, is an experienced campaigner and has just been awarded a place on the first Dimensions Autism and Learning Disabilities Leaders’ List. Heidi loves to talk. She puts on the kettle and starts chatting about her favourite subjects – her football club (Liverpool); her boyfriend (James Bryn Carter, a handsome 25-year-old who also has Down’s syndrome); her top grade in foundation French; the meals she loves to cook (chilli con carne, scouse hotpot, spag bol, you name it) and, of course, campaigning.
These days she is involved with Don’t Screen Us Out, a campaign to highlight the fact that the introduction of non-invasive screening for Down’s syndrome is projected to result in an increase in the number of pregnancies that are terminated. “The people at Don’t Screen Us Out say the reason mums and dads get rid of babies with Down’s syndrome is that they are given out-of-date facts,” she says. “They are being told lies and they need to be educated.” What kind of lies? “They are told we will never live on our own, which is rubbish because I live on my own. They also say they will always be a burden on your family. I think that’s rubbish, too, because my family loves me.”
Heidi has lived on her own for two years. Her flat, close to Coventry city centre, is crammed with everything she loves – DVDs, board games, photos of her family, presents from James, Liverpool memorabilia. On most walls are photographs of Heidi with speech bubbles reminding her of what she needs to do: “Heidi, have you done the washing up?” “Have you flushed the toilet?”
Heidi has a slogan. “My life is just as important and just as joyful as everybody else’s.” It’s alarming that she feels the need to tell us that. But perhaps it’s not surprising in a country where the latest figures show that more than 90% of pregnancies that screen positive for Down’s syndrome are terminated.
I ask how she felt when she was trolled on social media. “It was hurtful. But when I hear things like that I immediately go to the Bible, psalm 139, verse 14. ‘I praise you because I am fearfully and wonderfully made.’ It reminds me what God thinks about me.”
Heidi sees herself primarily as a campaigner bringing about change – the UK National Screening Committee has now established an ethics sub-group; the Church of England is pushing for more inclusion for people with Down’s syndrome; and the BMA is lobbying government for a debate on Down’s syndrome screening. “I feel I’m speaking out for those who don’t have a voice,” she says.
Do people still treat her disrespectfully? “Well, people do stare at me in town, and I just look away. I walk on by. But if I’m with my mum, she just stares right back at them.” Does Heidi think they just stare at her because she has Down’s? “I think so.” She pauses. “But I do like to sing and dance when I’m in town.” She bursts out laughing.
Dimensions is a national not-for-profit organisation that supports people with autism and learning disabilities. Its 60-strong Leaders’ List is inspirational in the range and ambition of the people it features. Take Andy Smith from Bury, for instance, who has campaigned on numerous fronts. He dropped out of university after trying and failing to mask his autism, realising that accepting it was the only way to be happy. “I started masking at high school. I had no friends at the time, but my mum was friends with the mum of a boy who went to my school, so I stayed with his group. However, rather than interacting with them, I watched them, analysed them, learned how they communicated with each other and this is how my mask developed,” he says. He deconstructs his own mask brilliantly. “At university, I drank a lot to get rid of anxiety and so that people thought I was fun, whereas usually I was very quiet and kept to myself. I also hid all of my interests as they weren’t ‘cool’. Masking also included knowing when to nod, laugh and do other movements, even when I hadn’t taken in what anyone had said, and acting like a joker to keep the level of interaction with the other students quite basic so that I didn’t start to struggle with keeping the mask.” He has now dedicated himself to making life better for other people, blogging about autism, creating a mask to support the #TakeTheMaskOff campaign, and tackling loneliness by creating signs for people to use in cafes to show they are happy for others to talk to them.
Debbie Marshall, who is autistic and has two autistic children, founded CANadda, a neurodiversity adult support group in Lincolnshire. Stewart Chappell, who has a learning disability and is a wheelchair user, trains police, social workers and medical staff to work with learning disabled people. Anna Farley has created Autography, a project to help autistic adults like her to use photography to explore their identity. Jonathan Andrews has campaigned to ensure autism charities are governed by autistic people. And Chris Bonnello, who has Asperger’s, runs a website called Autistic Not Weird. His Facebook page of the same name has more than 80,000 followers.
It is hard to believe that Arghojit Giri is only 13. He has a black moustache, an adult face and is huge – accentuated by the fact that he walks on his tiptoes. His mother, Anuradha, introduces us. “Simon, this is Ron,” she says. I am confused. She explains that everyone calls Arghojit Ron.
Ron has non-verbal autism and hypotonia (decreased muscle tone). He wears an expression of almost permanent puzzlement – as if he is continually weighing up the world. Occasionally, the expression breaks into a lovely warm smile, particularly for Anuradha.
At seven, Ron learned to communicate through the rapid prompting method, pointing to letters to spell out words. Now he uses a mix of letterboard, keyboard and iPad. It is a slow, painstaking method that requires patience and spelling skills – which Ron has in bucketloads. Even so, he is still likely to get up mid-sentence to stretch his feet and go for a wander.
In the living room of his parents’ home in Worsksop, Nottinghamshire, there is a guitar and keyboard, which Ron is learning to play.
You look so much older than 13, I say. “I g.r.e.w u.p q.u.i.c.k.l.y,” he spells out for me. He looks away from the keyboard, into the distance, as he types. Ron goes to a school for autistic children. His hero is Stephen Hawking, and one day he hopes to be a mathematician. He knows there is a long way to go – he is starting a maths GCSE, which he hopes to complete in two or three years.
Ron is determined to change the way non-verbal people are perceived. “I think they feel that non-verbal people don’t have any intelligence,” he types. Anuradha sits by him and translates.
Ron gets up and walks out of the room. “OK, Ron, once you’re done, come back,” she says, gently. Within seconds he returns. “Ron, come and sit here,” she says.
Why do people think being non-verbal is a sign of lack of intelligence, I ask. “Because we don’t express our thoughts.” Ron does – and incredibly succinctly.
Would he would like to be able to speak?
“Yes,” he types.
“The other day his brother Rick asked him the same thing,” Anuradha says. “And he said: if I were you, I’d spend all my time singing and talking rather than playing an instrument.”
A couple of years ago he wrote a poem called About Being Me. I ask if I can see it.
“Yes,” he types, before returning with it.
I can look very lazy.
But I’m always thinking.
I get cross at silly things.
But I also get cross at important
things.
I believe I will accomplish a lot
in my life.
But I am aware of my limitations.
I am clever and have good ideas.
But my body does not show it.
I am full of humour and jokes.
But I can’t laugh when I want.
I have lots of things.
But I can’t show it all.
I am happy with my life.
Despite the challenges that I have.
It’s a beautiful poem, I say.
“Thank you,” he types.
What is your favourite joke?
“It’s a Bollywood joke.” He smiles. “It’s hard to explain.”
So, instead, we chat about Brexit. “I think we are better off in the EU,” he types. Why? “Travelling, for one.”
Ron shows me another of his poems.
Growing is hard.
New emotions in my head outside.
Growing is hard.
My body is changing.
Growing is hard.
I am trying to adapt.
I will be happy to be an adult.
Then I can rest.
Does he really think that he will be happier when he is an adult? “Yes,” he types. “No more hormonal changes.”
Azrab Mohammed is autistic, blind, straight-talking and very funny. We meet at his flat in Sheffield, where he is accompanied by his assistant manager, Paul, and his regional manager, Rob. “So, are we all comfy now?“ Azrab asks before we start. “I can’t see nothing, so if you let me know what you’re doing that would be great.”
Azrab, 32, was bullied by a family member when he lived at home, then received inadequate support from the agency that looked after him when he left home. (One day, he was left with no support and a dangerously full catheter.) He doesn’t hide his anger at those who have let him down – from the local MP who didn’t get back to him (“If he’s got too much on his plate he shouldn’t be an MP then, I’m telling ya!”) to the agency that abandoned him for a day (“They were fucking shit.”).
He has always been a fighter, he says – and now he is fighting harder than ever. “I fight every time, I do. I can speak up for myself. I’m a communicator, I am. Communication is the most important thing in my life. Communication is everything.” Why? “If you don’t know communication, things can be shit, that’s why.”
Azrab is now fighting for better disabled toilets. He takes out a file he has created called the Mystery Shopper. Wherever he goes, the Mystery Shopper (AKA Azrab) fills out a form scoring toilets from 0 to 10 on wheelchair accessibility and cleanliness. He then sends his findings to the places he has scored. How does he tell them when they are not up to scratch? “I’ll tell them the right way, and if they don’t listen, they get a full mouth off Azrab.”
Did he devise the Mystery Shopper by himself? “No, with my staff.” His staff are the people who look after him around the clock. Azrab has around half-a-dozen staff, and these days he couldn’t be happier with them. “Rob and Paul are fantastic!” he says.
He is also helping with the Love Your Vote campaign, to make voting more accessible for people with autism and learning difficulties. The more he has campaigned, he says, the more he has conquered his anxiety issues. Azrab is a lifelong Sheffield United fan (the wall in his lounge is striped red and white in honour of the team), but has never attended a match. Now he is preparing to go to his first one in the new year.
“On Saturday we’re playing Leeds. We’re going to win 2-0.”
“Azrab is very good at predicting scores,” Rob says.
Do you bet on football, I ask. “No, betting in my life is haram. I don’t bet, I don’t smoke and I don’t drink.”
I ask if there is anything more we need to talk about. “No. I think we’ve covered a load of stuff there,” he says.
Keep on fighting, I say, as I leave.
He grins, and bellows his reply. “I’ll be fighting all me life, me.”
Sarah Clarke, campaigns manager for Dimensions, points me to a few facts and figures. While the chancellor, Philip Hammond, claims there is full employment in the UK (officially, the unemployment rate is 4%), fewer than 6% of people with learning disabilities known to English councils are in work; and only 16% of people with autism are in full-time work. Three-quarters of people with autism and learning disabilities have experienced hate crime. Last month, researchers from the UCL Institute of Health Equity found that people with learning disabilities will die 15-20 years earlier on average than the general population.
Clarke explains why Dimensions has created the Learning Disability and Autism Leaders’ List. “We noticed that people with learning disabilities and autism were under-represented in lists celebrating the achievement of people with disabilities. We wanted to open it up to anybody in the country with a learning disability or autism taking steps to make the world a better place.”
For the past year, 89-year-old Ursula Shepherd has been learning to read. At school, she says, she pretended she could read by turning the page when the girls she sat next to turned theirs. She worked in a brewery and an egg factory, jobs that didn’t require literacy. But she knows her inability to read has held her back. She admits she felt ashamed.
It was only when Ursula moved into the home of Lesley Waller in Exmouth, Devon, that she acknowledged her problem. Lesley is a carer with Shared Lives, a project that provides residential support for people with a range of disabilities and problems. “When I came here, I told you, Lesley, didn’t I?” she says, looking at her carer. “I did have a few tears. At schooI I used to say to myself: I wish I could read like the others.” She remembers asking one teacher what a word was, and the teacher contemptuously responding, “That’s not right!” She never asked again.
What made her learn to read in her late 80s? Lots of things, she says. Ursula has always liked eating in restaurants, but she could never read the menus. And choosing is one of the great pleasures of eating out.
“I’m getting better now at my menus. Lesley opens up the menu to see if I can read some of it, and she says I’ve improved a lot.” What’s her favourite food? “All sorts. I like baked potatoes and carrots and swede.”
Ursula adores romantic fiction. “I’d see these romance novels in the library, and I’d pick them up to see if I could read the words, but I couldn’t.”
And there were practical problems, too – such as finding herself on the wrong bus. “I’d think I was on the bus to Wiveliscombe, but I’d got the wrong one.” Finally, there’s crochet and knitting – despite her technical ability, Ursula couldn’t knit fancy patterns because she couldn’t follow the instructions.
Ursula beams when I ask if she enjoys her reading classes with Learn Devon. “Yes!” she says enthusiastically. “Well, there are lots of men there, too!”
She offers to read to me, and picks up a book called The Shop Is Saved. “I’m not very good yet. I’m still practising.” She reads slowly and clearly. “What do we need at the cash and carry? It was Friday and Ron was on his way to get the stock.” After a couple of sentences she slows down and begins to stumble.
“Normally, she reads more clearly than that,” Lesley says. “But we’re not very good at this time of the day. We woke Ursula up to speak to you. She was having her afternoon nap.”
But there doesn’t seem anything sleepy about Ursula now – she’s raring to go. “I’m very proud of my reading, and I’m very proud of having won an award.” What advice would she give to people who can’t read? “It’s never too late to learn. It’s changed my life beautifully.”