Technology is transforming the lives of disabled people. We are working with tech experts from AbilityNet to highlight some of the software and equipment that can make life easier, more productive and fun in our new technology section.
Jonathan Roberts has written a story book about his daughter, Kya, who was diagnosed with autism. After a great reaction to his book from Kya’s family and the professionals who work with her, Jon is hoping to publish it as a paperback.
Getting a diagnosis
We adopted Kya at 17 months old. We realised fairly soon that there were differences between Kya and other children of her age and we initially put this down to post adoption attachment issues. Kya’s Health Visitor raised her concerns and referred her for an assessment with regards to her development delays which resulted in a diagnosis of severe autism.
As Kya’s parents we’re blessed – she is a lovely, placid happy child and I wanted to capture her lovely little quirks before we forgot them so I started to record them. I started writing things down and showed my wife Sarah. She liked them and we thought it might make a little book.
When Kya started mainstream school, the children in her class asked the teacher questions about her, like:
“Why is Kya allowed to run around?”
Kya has lot of energy and finds it difficult to sit still. It’s hard for us to keep up with her sometimes, particularly when we are out shopping and we forget her rucksack with reins. Luckily, we live near some long, sandy beaches and open spaces where Kya can run around in a relatively safe environment but we still have to keep our eye on her all the time! She doesn’t understand danger so she’s always climbing stairs, railings and on top of kitchen work tops. It can be very tiring!
“Why won’t Kya talk?”
She has difficulty concentrating and finds it hard to communicate. She has delays with her speech and often babbles but she is learning a few words now. When we read the book to her, she points and says, “Kya!” and looks at me for approval. She loves looking at the book but she has a tendency to rip things up, it is like her sign of approval, as if she is multiplying things as opposed to destroying them.
Picturing a book
I wanted to create a nice, pretty looking and simple to read book explaining her differences and beautiful quirks. I wanted the book to be illustrated simply yet beautifully. We got in touch with Hannah Rounding, who was spot on with her pictures even though she had never met us!
We hope Through the Eyes of Me will help siblings, classmates and anyone who knows of someone on the autism spectrum.
Joan Ross, a contributor to Scope’s Speaking for Ourselves project, died in January. Born with cerebral palsy in 1939 (when disabled children didn’t have to have an education), she went on to become a language teacher, girl guide leader, advice officer for 17 years at Haringey Disabilities Consortium and a published author.
“My mother took it for granted that I was entitled to education like everyone else… She wanted me to be able to read so that I could read to myself and so on. She saved for me to go to a little private school very near where we lived, but they refused to have me so she tried the local infants school that was all on one level, and they were very reluctant. The headmistress did want to take me, she was willing to have me, but the education authority weren’t happy about me going and I didn’t have to go to school; it wasn’t compulsory.
So my mum decided to go to the education offices every day to ask them when they were going to find a place for me at this school she had in mind, and one day when she went she heard one of them say, ‘That Ross woman is here again’, and so she said, ‘Yes. And I’ll be here again tomorrow until you offer me a place for my daughter at school’.
So they did agree to place me in the school that she’d chosen, on condition that she came there and took me to the toilet twice a day, maybe more, fed me at lunch time; the teachers would teach me but nothing else, no personal care. But she was willing to do that and I was very happy there.”
Brownies and Guides
“We had a uniform which made me feel one of them. Our school didn’t have a uniform so I enjoyed having an identity. I enjoyed the badge-work in Guides because that was way of proving myself.
“We didn’t really take a lot of exams and that at school, so this was a way of stretching myself and proving myself. The Guides, once they realised that I was just the same as them, except I was in a wheelchair, accepted me and I really felt one of them.
“After I left school. I was still in the Rangers, the senior part of the Guides, and one of the things the Rangers did was help with Cubs and Brownies, so I was delighted when I was asked if I would like to help with a Brownie pack, and I did that for about a year, or maybe longer. And then my own church Brownie pack was without a leader and I longed to offer to take over the pack but I didn’t want to do that because I didn’t want to be turned down. So I was delighted when I was approached to actually do that, and I did it for 15 years.
And it really compensated for not working because it gave me an important job to do which took a lot of time but was very worthwhile.”
Looking for work
“I kept on looking out for jobs. I went to a few interviews and some of them were better then others, but nothing very promising.
“There was nobody to advise me. I went to the job centre to see a disablement resettlement officer, but she really didn’t seem to have a clue how to help me. And so I just looked up jobs and I wrote to the Director of Social Services in Haringey and I did have an interview, which looked quite promising…
“They wanted to set up an advice and right centre for handicapped people in Islington in the day centre, which would deal with telephone enquiries on benefits and also lots of problems relating to disability.
“And I applied for that job and got it and it was an amazing experience.
“I wasn’t teaching but I was helping other disabled people and
carers and expanding my knowledge all the time. I went on training courses and the project was managed by the Citizens’ Advice
Bureau so we were able to go to their training courses as well.
“And the scheme lasted the year and… they hoped that they would get more funding for it to continue but when the year was up no funding materialised, at a time when the centre – it was called ARCH [Advice and Rights Centre for the Handicapped] by the way – and it was really making very good progress and helping a lot of people, and we just couldn’t abandon it because the project wasn’t being
funded. I had another worker – there were two workers on the scheme – the other person was disabled as well, he was called Melvin, and we decided to carry on working for ARCH voluntarily for another year.”
Joan’s commitment to her community then led to her being an advice officer for 17 years at Haringey Disabilities Consortium.
In 2016, the Scope helpline responded to nearly 20,000 requests for information and support by telephone, email and via Scope’s online community and social media networks. We also supplied answers to over one million requests for help and information via our website.
Your top 5 issues in 2016
Apart from wanting to know more about Scope, the top issues people contacted us about were:
Benefits and finance
Social care and services
Funding the extra costs of disability
Unsurprisingly, the number one topic you ask about is benefits. To respond to this, we’ve employed an extra benefits and finance specialist on the team.
To complement the work of our specialist advisors, our partnership with the charity Turn 2 Us offers an online benefits calculator and grants search tool. Since its launch in July 2015, thousands of you have used this free service to improve your finances, completing 8,100 benefits calculations and over 7,200 grants searches.
In 2016 so far, the calculations have identified over £319,000 per week in unclaimed benefits. This can make a massive difference to the lives of disabled people and their families, as this customer explains:
“Thanks to your brilliant advice, I have had some fantastic news. I applied for Attendance Allowance with the form on your website and I have been awarded £55.10 per week which will certainly be a big help to us. Thank you.”
We love it when we hear stories like this. Another customer contacted us following his failed application for Employment Support Allowance (ESA). Our benefits specialist provided supporting information so that he could conduct his entire appeal himself. He went through two tribunals and finally, after spending a winter without heating and using food banks, he eventually won. He received a backdated payment of more than £5,000 as well ongoing ESA payments to support him to live.
Just the job!
Another caller who was out of work applied for a job at a company signed up to the Government’s positive about disability scheme. He met the essential criteria but had received a standard rejection letter so he thought he’d been discriminated against. We spoke to him about how to challenge the decision. The company reviewed his application and admitted a mistake had been made and he did indeed meet all of the essential criteria. They offered him an interview and he got the job!
Our online community
As well as answering calls and emails, Scope helpline continues to play an active role in our ever-growing online community. We are investing more time in answering your questions online because we know that answers to one person’s query can help many others too. For example, one discussion has had over 12,000 unique page views, meaning that many more people are continuing to benefit from our expertise and advice.
New information products
As well as responding to a wide range of enquiries, we have also produced lots of new online information in response to popular demand:
In 2017, we will continue to trial new ways to deliver information content with pilot videos on PIP assessments, PIP appeals and employing your own PA.
We’ll also be launching a new information product that will help guide people new to disability, like this caller to our helpline:
“After working within the corporate industry for over 20 years, I have recently become disabled and found the past 9-10 months totally life-changing. I’ve called various places and not received the help or level of service I have just been provided. I don’t usually do this but I really want to make a point to applaud the level of service and professionalism your helpline has. I felt as though I have been treated with dignity and pride, and not made to feel uncomfortable talking about my disability. So thank you again.”
Goodbye to Veronica
2016 also saw the retirement of helpline manager Veronica Lynch who has worked on Scope’s national helpline since it launched in 1990. She retired in April after 26 years’ dedicated service and won a national award for staff with a long-term commitment to their cause and who had made a positive impact to people’s lives.
We miss her but, more importantly, so will the people who have asked for her support over the years.
One parent, whose twins have cerebral palsy, said:
“I can honestly say that I don’t think I could have coped had it not been for Veronica and the helpline. They have given me so much time and support through all my difficulties and battles.”
Have a happy Christmas and New Year!
Thank you to everyone who has contacted us in 2016 and may we wish you all a Happy New Year.
For free, independent and impartial information and support on the issues that matter to disabled people and their families, contact Scope helpline on 0808 800 3333 or firstname.lastname@example.org
Please note Scope’s helpline is closed 24 December to 28 December, and between 31 December and 2 January.
Dr Lin Berwick MBE, counsellor, lecturer, journalist, broadcaster, homeopath, Methodist preacher is 66. She is one of a number of older disabled people who contributed to the Disability Voices website at the British Library Sound Archive as part of Scope’s Speaking for Ourselves project.
For Disability History Month, Lin remembers how a doctor labelled her as ‘spastic’ and encouraged her parents to have another child.
“This child is spastic. Take her home…”
When I went blind
Lin went to a school for physically disabled pupils. When she lost her sight, she was bullied.
“When I went blind, the kids at the school were really nasty and I went through some horrible jeering and bullying, and people laughing at me because I walked into things. You know, I went to walk through a door that had glass panels and, because I could see the light through I thought the door was open, and of course it wasn’t. I sort of smashed my face, and then I walked into a brick wall and things like that, and hit my face again and I had tripod sticks poked into, and walking sticks poked into my face and handfuls of mud rubbed into my face, and kids saying ‘Can you see that, then, Berwick?’ It was horrendous at a time when you’re really frightened, because you’ve now suddenly got a new disability which you don’t know how to handle.”
Finding a job was another barrier Lin had to face.
“When I got to the bank, it was one of these banks with these horrible revolving doors, which wasn’t easy, going through on a pair of tripods. Eventually, I found my way into the bank, and made my way to the accountant’s office, and when he opened the door he, said, ‘Oh, I know they told me you were disabled’, he said,’ ‘but I didn’t realise you were that disabled, but you might as well come in and sit down anyway’, and I thought, ‘God, this is a really good start to your first job interview!’ But I thought, ‘Well, I’m here. I’ve got one chance, so I might as well really go for it’, and he took my mother around the bank, showed her some of the obstacles, and we came back into the office and we started to talk about the work, and he proceeded to ask my mother every single question about my training.”
Becoming a Methodist preacher
Even in her spiritual life, Lin faced prejudice when she tried to follow her vocation and become a Methodist preacher.
“The Secretary of the meeting said, ‘I think we’re going to have a problem with you.’ I said, ‘Oh yes! Why’s that?’ ‘Well, due to your disability, I don’t know how you’ll cope with the public speaking,’ so I said, ‘Well, as someone who’s done over 300 radio broadcasts, I don’t think you’re going to have a problem.’ ‘Oh,’ and he said, ‘And I don’t know how you’ll cope with the academic study.’ I said, ‘Well, I have ‘O’ levels, and I have the equivalent of a degree in Psychology.’ He said, ‘Oh, you can learn then!’ and I thought, ‘God, if this is the kind of prejudice I’m going to get, this is just amazing stuff,’ and I said, ‘Yes, I can learn’ and he said, ‘And then we don’t know how you’ll cope with the access to the church buildings,’ and I said, ‘There, I’m prepared to admit you have a problem, but maybe together, we can work at it.’”
Unfortunately for me I got selected to be fitted with iron callipers. So all of a sudden you find yourself in leg irons, and you know from being able to run, they’ve put you in these leg irons, and you can hardly stand up, never mind run. And they put you in them, and they tighten all the leather straps on you when you’re in. You know, it’s basically, it’s just a form of torture; they’re just forcing your joints against what they want to do. And so, you find yourself, you might be wearing your callipers ‘x’ amount of hours a day. Now bearing in mind I could take these callipers off and run, and run, hop, skip and jump, that weren’t something that I enjoyed at all.
Climbing Ben Nevis
By seven o’clock I was out and away, and heading up Ben Nevis. Initially there was no one else about, and I had the route to myself, but as time progressed it wasn’t long before people started overtaking me. Throughout the day I made really steady and positive progress, and up through a place known as ‘the Red Burn’, and then the massive, steep zigzagging path that went to the sort of summit ridge, or plateau, and then finally across this, where there were still snow and an ice field to be crossed towards the summit, and I ended up, I arrived on the summit about four o’clock. There were a few people there, and one that stood out was an American chap who, when he saw me coming, started dancing up and down, shouting, ‘What the Hell? I’ve flogged my so-and-so guts out getting to the top of this mountain, and what do I find when I get here? A so-and-so cripple. You’ve ruined my day.’ At which he screwed his stars and stripes up, shoved it back in his rucksack, and stormed off muttering to himself; ‘And I don’t know how the hell I’m going to get back down again,’ and I leant over and shouted to him, ‘That makes two of us!’”
In the mid-1970s I’d bought a good-quality Super Eight Cine Camera and had made films of some of the walks that I’d done and rock climbs; the two walks which I’d filmed being the Three Peaks of Yorkshire and the Dales Way – a 100-mile walk from Ilkley to Bowness on Windermere, and also I had some quite good shots of me rock climbing at Ilkley and Brimham Rocks.
In the late seventies I had been showing these films at various places, you know, if I had to entertain anywhere I’d take along me Cine and compiled a film and showed these films. And the fact that I’d been doing these activities had come to the attention of Yorkshire Television who sent a producer/director out to see me, with a view to making a film, and I remember well as he watched this Cine film, an half-hour film that I’d put together, and when it had finished he says, ‘This is absolutely fantastic, this is absolutely brilliant,’ he said, ‘but unfortunately we could never show this or make a film about this, because the public wouldn’t be able to take it…’
Books by John Hawkridge
His first book Sticks and Stones was published in 1987. This was followed by Uphill All The Way in 1991.
The Headmistress at the school had refused to take me, and my Grandmother was formidable, absolutely formidable, where I was concerned: and through that visit I got to go to school, with the rest of the family; and my brother, can you imagine this – I thought nothing of it until I got older. I was five; my brother was about nine. He used to carry me on his back to school in the morning. Came for me during playtime, that means he carried me around because I couldn’t walk; carried me home at lunchtime, carried me back after school after lunch, and carried me back after school in the afternoon. That’s a bit much, you know, for a nine-year-old, to carry a five-year-old, and he did that every day and never complained.
I wanted to be a librarian
I wanted to be a librarian, and the careers officer Mr Jolly said, “No way, no way, could you ever do anything like that,” and what came back was a voice from the side, and that was the headmaster, who said, “Now then, how can you say that, because you don’t know our Alan: he can do whatever he wants.”
Working in a subnormality hospital
In the end, I got into trouble one day, big trouble, and I was absolutely furious because of my own experience. I couldn’t stop thinking that had the education authorities have had their way, when they said I was mentally defective, I could have ended up as a patient in that hospital; and that was a rather daunting thought: and they had a block, a ward, called ‘H Block’, and, you know, they had ABCD wards. H was a ward for low-grade patients; that meant their intelligence was very low, and they also had behaviour problems. Many of them had to be restrained for a time; every student had to do at least one month on H Block, and my first day there I just lost it. I went into orbit, oh, terrible. We had to feed the patients, and the staff on the ward got a main course and a dessert and mixed them both together, and fed it to the patients. I couldn’t do that. I kept thinking, ‘This could be me’, you know, ‘this could be me’. There’s no way I’d want my food like that: so I refused to do it…
In 1969, Alan became a teacher at Meldreth Manor School. He continues to have a keen interest in education, through visits to schools and through his writing and training.
For Disability History Month, Antonia looks back at how attitudes have changed to disability during her extraordinary life.
I was kept in a chicken incubator!
My mother was a Christian Scientist, and she didn’t like doctors. I think it was explained to her that we must at least have a nurse. My father got a chicken incubator from his brother, who was a farmer, rushed to the house, and I never went to hospital. I was kept in a chicken incubator in my father’s study, and they did have this nurse, that was a compromise, but my mother didn’t see me for weeks and weeks, because she was quite ill. I don’t think she wanted me anyway. I know she didn’t, because she was only very young, and, you know, didn’t know much. She wouldn’t have had me if she’d known anything. But I think that’s how I came to be how I am.
“All disabled women should be sterilized.”
My mother-in-law was absolutely furious because I had a disability, and she thought it was genetic. A fortnight before my baby was born, she suddenly said, ‘Well, you know, personally, I think all disabled women should be sterilised.’
Teaching in a night school under Apartheid
One of my students, for a short time, was Thabo Mbeki, the former President of South Africa. He was a very clever man, and he was a very beautiful man, too. He was about 19, I suppose, when I taught him. We followed syllabuses from London External Examinations. You could do exams which were called ‘London External Degrees’, in those days, and we based our teaching on those. I taught History, and they were all mad keen to do the French Revolution and the feudal system, that was their two favourite topics… I think I only taught him for a short time, but there were equally interesting students, but he was the cleverest.
My naughty daughter, Frankie, used to get hold of cannabis; this was in the seventies, and bring it home and smoke it, so I said, ‘Oh hey, give us a go,’ and because I knew people who smoked cannabis in the fifties, in Hampstead, you know: well, they do everything in Hampstead, before they do it anywhere else, and so she gave me a joint, and I smoked it.
I did, I’m not a smoker, so I didn’t inhale properly, but I said, ‘God, Frankie, the pain’s dropping out of me fingertips,’ and so she said, ‘Oh Mum, isn’t that interesting? Have another one. I’ll roll you another one.’ … and after that, I read an article, in The Independent, written by somebody with MS, called Liz, who lived in Leeds, and she wrote about the marvelous effect of cannabis on her MS, so I thought, ‘God, I must find out more about this lady…’
The Tech4Good awards were created by the charity AbilityNet with the help of BT to highlight the empowering influence of digital technology – whether it’s at home, at work, in education.
There were lots of great ideas this year but here were some of my favourites that used technology to make the world a more accessible place for disabled people.
Accessibility Award winner Wayfindr is an audio-based, open source app that allows visually impaired people to navigate the world independently. It uses smartphone technology and offers directions for stations, hospitals and shopping centres. In the future the project aims to provide navigation wherever you are in the world!
OxSight have created ‘Smart Specs’, an augmented reality display system that allows people to regain a sense of independence. It helps make sense of the physical environment by simplifying the ambient light, translating it into shapes and shades so that people can discern physical objects and perceive depth.
The NHS has estimated that 3-6 million people manage reduced continence due to medical or health reasons. Public toilets are a necessity, but with funding being cut, they can be difficult to locate, and are often not accessible. The Great British Public Toilet Map provide a database that allows you to filter results to suit you, including finding accessible toilets and baby changing.
South London Raspberry Jam
Inspired by his love of coding, and his Tourette’s Syndrome diagnosis at the age of seven, Femi Owolade-Coombes set up a crowdfunding campaign for an Autism and Tourette’s Syndrome friendly ‘South London Raspberry Jam’. As a result, Femi has introduced over 100 young people and their families to coding – all for free, and all at the age of just 10 years old.
But the overall winner of Tech4Good is aged just nine years old! Arnav Sharma has an aunt with asthma and set out to find out more about the condition and how he could use tech to help. Using Raspberry Pi, gas and dust sensors, Arnav’s AsthmaPi kit can help parents of children suffering from asthma. Using email and text message alerts, patients receive prompts to take medication and reminders for review visits.
March is Cerebral Palsy Awareness Month. Scope helpline manager Veronica Lynch answers the most common questions she is asked about cerebral palsy, particularly the causes and effects of this condition.
Cerebral palsy is a neurological condition in which parts of the immature (up to age of 5 or 6 years) brain is injured or impaired. This injury generally affects muscles and balance and can result in a physical and/or sensory impairment. Cerebral palsy is the most common childhood disability affecting about one in 400 live births.
What are cerebral palsy symptoms?
The effects of cerebral palsy can range from extremely mild to profound with additional sensory or learning impairments. The condition is individual so no two people will be affected in the same way.
It’s impossible to give a list of symptoms as each person will be different. Doctors will generally look at any issues during pregnancy or at the time of birth, run neurological tests such as MRI scans (although a child could have cerebral palsy and this may not be depicted on an MRI) and observe the child as he or she develops. The average age for diagnosis is around 18 months to two years.
What is cerebral palsy caused by?
There could be a number of causes of cerebral palsy, such as an infection during pregnancy, oxygen starvation, failure for the brain to develop correctly. It is more common in twin or multiple births or in low birthweight and premature babies.
There is often no obvious cause. Recent research has shown there may be a genetic cause in about 14% of cases but more research is needed in this area.
Who does cerebral palsy affect?
Cerebral palsy can affect anyone although it is more common in boys than girls.
What is cerebral palsy life expectancy?
It’s possible for someone with severe cerebral palsy to have a shorter life expectancy either because the impairment to the brain is so severe that they do not survive to adulthood or because their posture and organs are affected causing respiratory or heart problems. However, in general, people with cerebral palsy will have the same life expectancy as anyone else. Read more about ageing and cerebral palsy.
Cerebral palsy is a complex condition. For further help, information and support – contact the Scope helpline on Freephone 0808 800 3333 or email email@example.com