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24 July 2014 Last updated at 21:14 ET

Autism school's legacy lives on

Paul Shattock's son Jamie was diagnosed with autism in 1975

Free schools for children with autism are gradually being setup in the UK by community groups, with another one due to open in Easter 2015. But in the 1970s, parents in Sunderland clubbed together to create what they saw as a real need back in a time when autism wasn't such a well-known disability.

In the 70s Paul Shattock's autistic son Jamie was six. Although they say he was a lovely child his parents - like many parents with autistic children - found they needed extra support.

"He slept 4 hours a night," says Shattock. "In the end the only option we had was for him to go to a residential school."

But the specialist centre available to them was in Aberdeen, some 394km (245m) away from their home in Sunderland. "I had to take him, that was the worst day of my life, I cried my eyes out and he did too," Shattock says.

Unhappy with his son being so far away, Shattock, who is the chairman of Education and Services for People with Autism in Tyne and Weir, wanted to do something to change the situation and so teamed up with local parents who had children on the autism spectrum.

Paul with Jamie Paul was desperate for his son Jamie to be closer to the family

They all wanted their children to be closer to home and still receive the correct care and education, so looked into setting up their own residential school.

The group started by purchasing a a former Jewish day school in Sunderland that needed quite some restoration. Despite raising the £70,000 needed to buy the building funds were low and the work was eventually done by the parents, with help from young unemployed people on Government training schemes.

"It was a wreck, a real 'seat of the pants' operation," says Shattock but reports there was tremendous support from the community. "We spent four years fundraising. Every working men's club in Sunderland had social events, we approached leek clubs, pigeon fanciers' associations, rotary clubs and round tables for funds…we tried everything. It was a Sunderland venture, a local venture."

By 1980 Shattock's mission to provide a local residential school for autistic children was complete.

On opening there were just two pupils in attendance. It was the first specialist autism school in the country offering a full residential service 52 weeks per year. But very quickly that figure grew to 12 children aged five to 16 and local authorities began to fund places.

Sunderland autism school's legacy lives on

But the school was the start of something much bigger. The founders realised there was a need for something more as the children became older and reached leaving age. The perceived need led to the setting up of a new college catering for young people aged over 16.

This time the parents took out bank loans secured against their houses in order to buy an old vicarage. It too is still running today and provides education placements for young people aged 13-19 yrs with autism, learning disabilities, other disabilities and/or mental illness.

Shattock with the mayor opening the school Paul Shattock (left) endeavoured to open a school for autistic children after his son Jamie was diagnosed in 1975

In 1998 Mr Shattock received an OBE for over 30 years of services to the autism community.

More on how free schools for children with autism are becoming more prevalent can be read here.

Film made by BBC North East Today.

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Being blind in Israel and Gaza

As fighting continues in Gaza and Israel, two blind women, one Israeli and one Palestinian, describe how they experience war through hearing it, and how it affects their lives.

"The sounds that come are different", says Dalal Al-Taji, a blind Palestinian woman from the Gaza strip. She lived through three previous wars, one in Lebanon and two in Gaza, prior to the current troubles and has become used to the noises of war. "I know when the bombings are coming from the sea," she says, "And I know when bombings are coming from planes because it's closer, high above your head.

"Another thing we have are drones. We call them zannana in Arabic because they go zin, zin, zin. I can hear them all the time."

On the other side of the divide, warnings via Twitter and the sound of air raid sirens alert Naama Shang when trouble is near.

Shang lives with her husband in the central Israeli city of Raanana, just north of Tel Aviv and almost 99km (61m) from the Gaza strip. They are both blind and so rely on their hearing to know what's happening and what action they should take.

Dalal Al-Taji with one of her students Dalal Al-Taji (right) is usually a teacher but hasn't left the house for two weeks

"If we can hear [the air raid siren] - and there were instances where we couldn't hear it - we have 90 seconds to get to a bomb shelter", says Shang, who was recently asked by her local social services if she needs help to get to one. She doesn't, because newer buildings in Israel have integrated shelters and she has one in her flat.

Al-Taji says that while some Palestinians in Gaza get flyers and phone calls telling them to leave the area, for her, the sound of bombing is the only warning that trouble is getting close. She says that at 45km (28m) long with a population of 1.6 million, Gaza is so densely populated that there's no place for shelters. Keeping safe is difficult for her.

Start Quote

We both want peace. We want to live and be with our loved ones”

End Quote Naama Shang

"Either you have to stay in your house, or you have to try to go somewhere far from the border", she says. Al-Taji chooses to stay in her house, she says: "We have to keep windows open because if any bombing happens and it shakes, then the glass doesn't break."

Although they are on opposite sides, the conflict has affected the women's day to day lives in similar ways and both have felt unable to leave their homes.

In usual circumstances, Shang has good mobility and can get around her town. Due to the troubles, she moved a planned trip forward and left Israel for the UK late last week.

Naama outside with her husband and a dog Naama Shang (left) lives in Israel and has a bomb shelter in her flat

Before the trip, she says she stayed home unless absolutely necessary. "I didn't want to be caught out and not know where to go. It's very hard to just follow other people or to see signs."

Al-Taji hasn't been out of her house for two weeks now. She works as a teacher but never travels unaccompanied because she says Gaza's infrastructure is not that well developed. "you never know what might happen," she says, "If I need anything, I just try to get someone to help."

Find out more

In Touch titles

In Touch is broadcast on BBC Radio 4 at 20:40 BST on Tuesdays - or catch up on BBC iPlayer

Unlike Shang, Al-Taji has no plans to get out any time soon. "First of all, the border is closed, you can't really leave. Secondly, and most importantly, I can't just leave my house, my friends, my family, my people."

Shang and Al-Taji have a lot in common besides living in a conflict zone. They have both spent time in Scotland and are both music enthusiasts.

"One thing that keeps going through my mind is that Dalal and I are on the same side," says Shang. "We say the same things, we experience the same things. It brings the point even closer to home. We both want peace. We want to live and be with our loved ones."

In Touch can be heard every Tuesday at 20:40 on Radio 4 and later via podcast or the BBC iPlayer.

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First aid for the mind

Four people having training, sitting around a table with paper and pens

Charlotte Walker trains people to be the go-to person in the office if someone gets badly stressed or has a meltdown.

"Hi, how are you?" Most of us start the working day by asking how colleagues are doing, but we may not expect an honest answer. What would you do if a colleague replied: "I'm struggling with my mental health." Would you feel able to respond? Or worried you may say the wrong thing?

For years I was a first aider in a busy office, dealing with everything from nosebleeds to chest pain and stroke. My training gave me the confidence to get involved and the knowledge to decide whether I needed paramedics. People often said I handled these incidents well, but mostly I just provided calm, compassionate support until the professionals arrived.

These days I give first aid training in the workplace - but for the mind, not the body.

Start Quote

We just need to talk about mental health in the same way as we do physical health”

End Quote Poppy Jarman CEO, Mental Health First Aid

First aid for physical health has been around for a century, but only in recent decades has something similar emerged for mental wellbeing. Originating in Australia, Mental Health First Aid (MHFA) is a programme which came to England in 2007.

Most mental health situations in the workplace won't be an emergency. Making a difference to a colleague who's struggling is easier than you might think and small acts of compassion can make a huge difference.

So what do these first aiders do? Often they do very simple things.

Somebody finding the start of the working day a little difficult, might welcome a friendly face at the bus stop or a bit of company on the walk to the office. A person with anxiety may appreciate you volunteering a desk swap so that they can sit somewhere quieter. A chat in a café at lunchtime or over a cup of tea can offer someone who's depressed a chance to say how they are really feeling, something they may not often get the chance to do.

One of the most helpful things anyone ever did for me was assist me to rearrange my "to do list" so that I felt less overwhelmed. Even those who are mentally well can help themselves keep things that way by building their resilience to stress and anxiety.

Simple strategies like buddying up for walks in the park or encouraging each other to leave work at a reasonable time can help nip workplace stress in the bud.

An MHFA training classroom with people sitting at desks listening to a talk MHFA offers training in mental health symptoms, diagnoses and services

Mental health first aiders are trained to deal with common problems like anxiety or depression, through to more urgent situations like psychosis (when somebody is no longer in touch with reality) or suicidal thoughts.

I taught a group recently in which an HR officer had signed up because of an incident at work. She'd been asked to speak to an employee who immediately burst into tears in front of her. She had wanted to help him, but was afraid of getting it wrong and making things worse.

In training sessions, participants often say they're concerned they may not be the right person for the task. My fellow trainer John and I are both mental health service users and know how important it is that mental health is dealt with sensitively, but we believe participants already have what it takes to perform this role.

One in four people experience a mental health problem, yet we are often afraid of discussing the topic. As Poppy Jarman, CEO of MHFA England, says, "The fear surrounding mental ill health and the misunderstanding around recovery is one of the biggest barriers for creating mentally fit workplaces.

A woman crying with another woman comforting her How would you react if a colleague cried in front of you?

"We just need to talk about mental health in the same way as we do physical health," she says, "but that can only be done if the culture of the workplace is set up in a way where mental health is promoted and there is empathy."

I really want to help develop that workplace culture of openness and empathy, because too many people with mental health conditions end up taking long-term sick leave or losing their jobs.

I would like to see every office have somebody trained in mental health first aid alongside physical first aiders, and according to MHFA England this is already starting to happen. And that means that more of the time when someone opens up in the workplace, a colleague will step forward and choose to keep that all-important conversation going.

MHFA England has around 600 instructors who have in turn trained over 77,000 people in first aid for mental health.

Charlotte Walker has bipolar disorder and blogs about her experiences here.

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No more Mr Nice Disabled Guy

Laurence performing live

Disabled comedian Laurence Clark admits that sometimes he's not been very nice to people who have tried to help him - but he doesn't care. Much.

We disabled comedians have always enjoyed focusing on the unusual things the public says to us, it has proved a rich vein of comedy, as there's seemingly no end to the range of bizarre reactions we can get.

In the past, strangers have mistaken my cerebral palsy for drunkenness and, when taking my kids out trick-or-treating, neighbours have handed sweets to me instead of to my kids. I have assumed they were being patronising but, as I use a power wheelchair, maybe they thought I was dressed up as Davros, Doctor Who's arch-nemesis.

A drawback to bringing up awkward disability moments in front of a mainstream comedy audience is that you may be asking them to laugh at things they may have done themselves. So disabled comics have to work hard to create an atmosphere where it's OK to laugh.

Humorous though it often is, concentrating on what members of the public say is only one side of the story. The other side is me, and how I respond to it. You see, if I'm completely honest, I handle those interactions very badly. Very badly indeed.

In my Edinburgh Fringe show I recount times where I've reacted by losing my temper and screaming blue murder to the amazement of onlookers, calling an esteemed colleague an obscenity, making a waiter cry and biting a policeman's ankle.

Laurence covered in cake Laurence's show, Moments of Instant Regret, is at the Edinburgh Fringe

Why do I lose my temper? Sometimes it's because I've had a bad day, other times I've had my space invaded, but most often it's caused by what I'm beginning to realise is a serious aversion to other people being polite, helpful... or nice.

Everything you've ever seen and read, tells you to be nice. When we were kids our parents told us to be nice. At that age we never listened but maybe the world would be a better place if we still negotiated using only the threat of wedgies and wet willies.

I've come to hate nice. To my way of thinking, nice is not nice. Nice is in fact bad because nice causes me problems.

Let me explain nice. Although I'm a wheelchair user, I can walk up steps if I take my time and use a handrail. It may look like a horrific accident waiting to happen, but I'm actually quite steady. What gets in my way, however, is someone being spontaneously nice by grabbing my arm to give me support which can cause me to lose my balance and fall.

If a total stranger accosted you and made you tumble down a flight of steps, you'd be justified in telling them where to shove it. But when they act nicely, with the best of intentions, supporting me because they're worried I might fall. You can't shout at them and feel good about it. Perversely, in some ways I find open hostility easier to deal with.

Being nice to others requires anticipating their needs and desires. What I need is to be left alone. What I desire is peace and quiet. Nine times out of 10 the public get this horribly wrong.

Another example. When I'm out shopping, I'm often asked if I would like an item fetching down from a higher shelf and, before I have the time to reply, they pass it to me. The person is always trying to be helpful but since when was an offer of help a rhetorical question? I don't know how to deal with this stuff now - it happens so often.

Laurence with his wife and two kids Laurence at home with his family, trying to be nice...

The other week I had a supermarket assistant follow me round the store for ages, offering help. I repeatedly said no thanks, tried shooing her away and even told her I'd throw a bag of wholemeal penne pasta at her, but she just kept smiling. After an hour I had a basket overflowing with groceries I never wanted which I then had to ask someone else to put back on the shelves for me. But this person also didn't understand my cerebral palsy speech pattern so smiled at me a lot, even though I could have been asking for his PIN number. All very polite and nice but terribly infuriating.

Find out more

Rob and Kate

Laurence Clark was on this month's Ouch podcast. You can download and listen to it here.

I'd like to think that it's perhaps understandable why I don't always respond to niceness with niceness but there are a number of past incidents which have left me with feelings of remorse. For my Fringe show, I've set myself the challenge of revisiting some of these moments of instant regret and trying to make amends.

Having recently hit 40, I'm a bit more chilled out and don't get quite so wound up. I've come to realise that my stand-up material shouldn't just be about giving positive PR for disabled people, so I've created a show in which I look at how unpleasant I can be.

Surely there's room for a bit more honesty now that portrayals of disabled people are broader. Equal representation should include those times when we get it wrong and, like me, behave like an idiot.

Laurence Clark's new show, Moments of Instant Regret, will be on at the Assembly George Square, Edinburgh, from 30 July to 24 August, part of the Festival Fringe.

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Ouch show 110: Being mean

Ouch team

On this month's show: Have you ever got mad with someone trying to help you? Comedian Laurence Clark has - his latest show is all about those moments of instant regret disabled people sometimes experience.

Also: Jess Thom - aka Tourettes Hero - talks about tics and theatre traumas, a blind man with a gun licence and a martial arts expert discuss self-defence for disabled people, and what problems arise when wheelchair users try to use the toilet on planes?

Rob Crossan and Kate Monaghan present.

Your monthly way in to disability news through chat, humour and the little things of life.

How to listen

Ouch podcast 110

Show notes

Find out more about this month's guests and discussions with our selection of links.

  • Comedian with cerebral palsy Laurence Clark's new Edinburgh Show, Moments of Instant Regret, delves into the darker side of disabled people. He has written about bad behaviour for Ouch before. Read how he came to make a US waiter cry.
  • Ouch travel correspondent Michael Holden mentioned new UK airport rules that say electronic devices have to be charged up before you fly. Find out more.
  • Carey McWilliams is a hunter, and he was the first totally blind man in the US to be granted a licence to carry a concealed gun for self-protection. Now McWilliams teaches other disabled people about owning weapons.
  • Jessica Thom has Tourette's syndrome. Her new live show is called Backstage in biscuit Land, named after her most regular verbal tic "biscuit". She blogs about life with Tourettes most days here.
  • Music this month is by Nick Farmer, who has cerebral palsy. Farmer wrote this song with the help of his brother-in-law Nathan, in an effort to find the woman of his dreams.
  • For other audio clips from Ouch, go to our Audioboo channel.

Producer: Emma Tracey

Follow @BBCOuch on Twitter and on Facebook, and listen to our monthly talk show

The assisted dying debate

Two people holding hands in hospital bed

The Assisted Dying Bill is due to receive a second reading in the House of Lords on Friday. As has been demonstrated this week, it's a divisive issue, and can be confusing.

While some say it's a simple argument about choice, others, including many with disabilities, say it has much wider implications.

Campaign groups such as Dignity in Dying who agree with Lord Falconer, who introduced the Bill to the Lords, are keen to point out that public support is very firmly on their side.

And others, including Sarah Wooton, chief executive of Dignity in Dying, says 79% of disabled people support a change in the law.

The figure she quotes is from a poll commissioned by her organisation in which YouGov surveyed 1,036 disabled people. It's potentially confusing because a survey from the disability charity Scope reports a quite different story: "70% of disabled people are concerned about pressure being placed on other disabled people to end their lives prematurely, if there were a change in the law." So which of the surveys do we buy into?

Actor Liz Carr is keen to highlight that people already have the choice and it's not against the law to take one's own lives. Carr has a disability herself and, along with many organisations of disabled people in the UK, does not support assisted dying.

Lord Falconer on the Politics Show Lord Falconer is keen to point out that public support is on his side when it comes to assisted dying

Those against are concerned that, if passed, the bill would have a negative impact on the most disabled and vulnerable in our society.

Dignity in Dying are clear to point out that they advocate assisted dying - where terminally ill yet mentally competent people take prescribed medication to end their life. It's not assisted suicide, voluntary euthanasia or euthanasia. They're not the same thing. They've also said to me that this issue is not about disabled people.

Start Quote

I am concerned that if assisted dying became law, then people would look at me and ask why I am alive and not asking to be killed ”

End Quote Pam Franklin

Disability campaigners such as Baroness Jane Campbell say it's a "dangerous time" to consider any change to the law. She says that the economic downturn and austerity has led to a serious hardening of attitudes towards vulnerable members of society, with pensioners and disabled people being routinely branded as "scroungers" or accused of being a "burden".

She argues that in the current climate, relaxing the law on assisted suicide would be like an open invitation to those with something to gain from pressuring them into ending their lives.

Last weekend wasn't too positive for those like Baroness Campbell who are against the bill, with Desmond Tutu and former Archbishop of Canterbury Lord Carey showing support for assisted dying for those with a terminal illness.

Of all the evidence, Lord Carey said the Tony Nicklinson case had "exerted the deepest influence on him".

This was, once again, a little confusing. Nicklinson's case was desperately sad but he would not have qualified for an assisted death because he was not terminally ill.

Declaration for Assisted Dying Act 2014

Those who are in favour of the bill have made quite an impact, but what about those who are against, like Pamn who has motor neurone disease (MND)?

Pam can only communicate by using technology which she controls by moving her eyes. Although some may look at her and think, "if that were me, I'd want the choice to end my life," Pam most certainly doesn't want to die, or for the bill to be passed.

She told me: "People may assume that all disabled people don't have a good quality of life and would want to die. I am concerned that if assisted dying became law, then people would look at me and ask why I am alive and not asking to be killed."

Pam's case also throws up the dangers of diagnoses. She was diagnosed with MND, a severely life-shortening condition for most people, but 20 years later she's still watching films and box-sets (she's currently obsessed with True Detective), reading books and asking me for smoothie recipes.

No one can predict what's going to happen on Friday, all we know is that a record number of peers have registered to speak and that this issue is complex, and whether you're for or against, it's a subject that invokes passion on both sides.

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When blind people lose a loved one

Coffin bearers carrying a coffin

The loss of a loved one is tough, but blindness presents particular challenges when coping with a death in the family. Dave Williams, who works for a software company in Worcester, is blind and shares his recent experiences of bereavement on this week's In Touch.

I was on holiday in the Mediterranean when I got the call - my mum had been taken critically ill and I had to return home as soon as possible.

In the UK, blind people intending to travel by train or plane are often encouraged to book assistance well in advance. But what if your journey is unexpected, as mine was?

Luckily the staff at Lisbon airport were helpful when I turned up clutching my passport and white cane. A few hours later, I arrived at intensive care.

When you can't see things like skin complexion, the flicker of eyelids, or facial expressions, your imagination attempts to fill in the blanks. To get a sense of Mum's condition, I became fixated on the mysterious sounds of life-support equipment and the medical jargon I heard.

Start Quote

Sighted people are able to look at old photos and letters to help the grieving process”

End Quote Dave Williams

After hours at Mum's bedside, the prospect of standing up was nerve-wracking. I feared becoming entangled in the profusion of tubes and wires leading to and from the hospital bed.

I was aware that family and friends were waiting for news. Getting outside the hospital building in search of a decent mobile phone signal is easier said than done, especially when faced with the mobility challenges of secure entrances, cavernous foyers and a maze of corridors.

Thankfully I was not alone. My sister, who is also blind, was a great comfort. Together we adapted to our surroundings, located the canteen, and other facilities. A problem shared and all that.

The doctors and nurses on the front line were very supportive and willing to answer our questions up until our mum's eventual passing, and beyond.

The hospital gave us a bundle of leaflets detailing how to register a death and where to find emotional support.

Dave on holiday in the med Dave was on holiday in the Med when he received the news his mother was ill

With the bottom just fallen out of our world, it didn't occur to either of us to ask about Braille or large print alternative versions of Care After Death or The Bereavement Guide. Surely this information has been made accessible somewhere?

The funeral directors helped with form filling and advised on flowers and how Mum should be presented in the chapel of rest but, inevitably, we were forced to take some of the visual decisions on trust. We felt more confident choosing music though, and writing a eulogy which I read in Braille.

I felt a slight sense of relief that Mum had chosen a cremation rather than a burial. I didn't fancy teetering on the edge of a freshly dug grave as the coffin was lowered in to the ground.

Putting our mum's affairs in order would have been complicated had she not made a plan. Making arrangements would have been harder without our energetic relatives who drove us everywhere, and supported us in so many other ways.

Find out more

In Touch titles

In Touch is broadcast on BBC Radio 4 at 20:40 BST on Tuesdays - or catch up on BBC iPlayer

Sighted people are able to look at old photos and letters to help the grieving process. My photography skills leave a bit to be desired, and Mum could see so didn't write to me in Braille.

I have ended up with: some old crockery, a couple of sound recordings and lots of memories. It doesn't feel enough. Can my sighted friends and colleagues tell from my face when I am thinking of Mum, I wonder?

I doubt I will ever fully understand the relationship between blindness and bereavement. But I have come to appreciate that a little planning and preparation goes a long way, even more so when the people left behind can't see.

Make a will. Write a funeral plan. Make sure these documents are accessible to the people who need them. It makes life so much easier.

And to our Mum. For being stoic and thoughtful throughout your life, thank you.

Dave's story was broadcast on In Touch, the long-running programme for blind and partially sighted people which airs every Tuesday at 20:40 BST on Radio 4. You can listen to past editions on their website or receive a podcast of the programme each week on your smart phone or portable device.

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Young people explain psychosis

John appearing in the film, he's outside and seems to be mid-conversation

In a new YouTube video by 25-year-old filmmaker John Richardson, he and two other young people recount their personal stories of psychosis and the help they received from a mental health service for young people where they live in Sussex.

"I was speaking a million miles an hour to my friends about thousands of different topics," says Richardson in the film, saying he had paint and coffee stains all over him, and had written words up and down his arms.

We then see a young man, Dominic, who believed he was Jesus and later a young woman, Jo, who talks about the troubling agreement she made with her hallucination. She says: "We made a deal that he could be with me when I killed my friends and family." She believed at the time that carrying out this act would save the people she loved from an even worse fate.

The film explains the kind of help and understanding they received from the early intervention service, a team dedicated to helping young people. Richardson says he made the film Simon Says: Psychosis because it's the one he would have wanted to have seen when he became ill. Instead, he says he spent two years jumping out of windows and hiding to avoid discussing his mental health with the team.

John sitting outside

John Richardson spoke to Ouch this week:

What was your first experience of psychosis?

I was fed up with my film course and felt unfulfilled, so I started getting all these ideas of films I could make in the summer and it snowballed into a bit of a psychotic episode. I couldn't sleep and was running around the town, filming everything and talking to my Dictaphone. A friend got my mum up from Eastbourne and she found me lying in glass that had accumulated over five days of me breaking stuff. To anyone in a normal state of mind, it just looked like a mess, but to me, in that moment, I was arranging it into some sort of intricate piece of art. I thought that if someone could work it out, they'd glimpse what kind of state I was in. I still have all the footage, which is quite disturbing.

When did the early intervention team get involved?

They came the fourth day I was in hospital... but I wasn't open to help. I think most people have that engagement issue, where they don't feel there's anything wrong with them or they don't feel like the people who are saying that they can help, can actually help. They just don't trust them. The team increased my positive outlook on life. They changed the way I think about hope. Rather than it being that the world's going to blossom into rainbows and flowers, it's that I can find some hope in myself and be a bit stronger in the future. They armed me with the tools that I need to stop similar things happening to me again.

How does your film differ to any other mental health films you've seen?

For a start, we don't have any manipulative, emotional piano. We tried to make it as honest as possible and not too much like a glorified advert. I'm a cynic so I look right through that "this service is amazing" stuff and see it as a lie. It is nice for people to see that the clinicians are actually people and have personalities too. The first thing professionals should do is strike up a relationship in a humane way, something like "what's your favourite colour". It is easier to form a therapeutic relationship if you can relate to them as a person.

You can watch the film Simon Says: Psychosis here

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Enter the maze - your feedback

Computer keyboard

There can be a great deal of misunderstanding around disability, some call it a maze in fact. So here's where we bring your thoughts on our articles to the blog, as seen by us on email or social media.

Early last week we published Three's a crowd: Living with your lover and their carer. Though it might read like the BBC have been taking lessons in headlines from the tabloids, it's a serious look at how relationships might become unbalanced if one of the people in that relationship brings a carer into their shared home. It looked at friction, children, and sharing private spaces like the bedroom, with an outsider. We got a lot of appreciative tweets, thank you.

One reader, a carer himself, emailed us about the amount of time his role takes up. He says: "Being a carer whilst working full time and trying to juggle caring responsibilities which equate to full-time is, at best, crazy!" he said.

Zoe with boyfriend Will Zoe Hallam was living with her boyfriend Will Iles in university halls of residence as well as having 24-hour care

In one bit of the article, Zoe Hallam talks about how she gives her personal assistant the weekend off so she and her partner can have privacy; on those days he becomes her carer. She notes: "I can't expect the same speed of response as I'd get with a PA who gets paid" and it struck a nerve with Richard Reeves. He emailed in with this response:

"I grew up around people that needed the care described [and] I am a little disappointed about the way the carer is portrayed in your piece. A carer can be perceived as both a child and a parent. Always there, sometimes required, sometimes desired but there regardless. A carer is not with you because they are getting paid, they choose to be there. It would be a beautiful world if they were not required but to make it sound as though they are a barrier to a relationship is a travesty."

In the article, Lizzy Gwilliam spoke about how it got to the point where her daughter preferred her carer to her. Richard Sandy got in touch to remark on the same issue saying "though it took a while for me to get used to the presence of a PA, the hardest bit for us was setting boundaries with regards to daughter when she was born a few weeks ago. Our agency outlined some complex do's and don'ts about child care. For example, the carer can pick our daughter up but can't perform any care such as feeding her. They can pick her legs up so my wife can change her nappy, but cannot do it themselves."

Somebody putting a pound into a charity collection tin

At the end of the week we published Too many charities, too much waste? It was about recent comments from Lesley-Anne Alexander, chief executive of the Royal National Institute of Blind People, who says there are too many charities doing the same thing and needlessly competing against each other; she is calling for the Charity Commission to informally regulate numbers and talks about a kind of federal super charity system which would place users first.

We had a good number of engaged comments via email, Facebook and tweets. @Digitamworth tweeted about how small can be good: "We set up our volunteer group because of local need. Charities would charge us for affiliation. We wanted to set our own agenda."

There were opposing views to this article however with @TheSpirit65 tweeting: "Is starting a new charity always a good thing? #NO, they maintain, reinforce n reproduce". And a Twitter conversation emerged. @Jademarisa got in touch to say: "there shouldn't be such things as charities, it should be the governments who cared for their citizens" with @Digitamworth responded that this would be ideal but added: "Sadly policies often produce more need for charities to step in."


A piece on Dennis Stevenson, the former chairman of HBOS, talking about his experience of clinical depression, caused a bit of a flurry. @Deffmick tweeted "now he knows how most of the UK feel. Join the club mate, take a tablet and get on with it." But @IrishJonny took a different view tweeting about the article: "wow, interesting and honest".

Stephen Green

On Tuesday we put up a video about Stephen Green - a parish councillor who has Down's syndrome. Christina Reyes commented on our video of Stephen on Facebook using lots of exclamation marks: "Good for him!!!!!! People with Down's syndrome are very intelligent! Don't be fooled!!"

You might want to read about another person with Down's syndrome who is helping her community out in a similar way. Sara Pickard is a community councillor in Pentyrch in Wales. You can read more about her in this article from Wales Online.

Disability matters have many varied angles and we want to hear from you about what we produce, and your ideas for new articles too. Email

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A guide to assistance dogs

Canine partner bringing owner crutch

Ever seen someone with an assistance dog at a checkout queue and wondered what it does? Here is a photo guide to help you identify some of the dogs that are out there working at the moment.

Assistance dogs can help disabled people out in a variety of ways from acting as a guide to blind people, to fetching your washing out of the washing machine if you are unable to.

There are a number of different assistance dog charities and organisations ranging from the large such as Guide Dogs who currently have 4,700 dogs to the small like Medical Detection Dogs who have 50 dogs that detect sugar level fluctuations in people with diabetes.

The training of dogs takes a long time and is often very involved. Puppies sometimes start training at six to eight weeks old as they begin to familiarise themselves with their surroundings and learn commands.

All accredited assistance dogs pass the same initial test - a public access test. They also undergo task training which is specific to the disability of the person they will be assisting.

A young girl Gemma hugging Polo, her medical detection dog Medical detection dogs such as Polo wear red and can detect when diabetics' blood sugar levels are low.
Canine partners dog getting broccoli for its owner in the supermarket. She is in a wheelchair Assistance dogs trained by Canine Partners wear purple and assist with a range of daily tasks that may be difficult, painful or impossible to perform.
Dog getting washing out of the washing machine Assistance dogs carry out activities such as unloading the washing machine, shopping and opening and closing doors.
An owner with her seizure alert dog Support dogs wear blue. Among a number of trained assistance dogs are seizure alert dogs like Venus who can detect an epileptic seizure up to 50 minutes before it happens.
Joe and Daisy Hearing dogs for deaf people wear burgundy and hear sounds and danger signals such as the fire alarm, telephone and doorbell that deaf people like Joe can't.
A blind man and his guide dog walking down a rural path in the countryside Guide dogs wear fluorescent strips around their white harness. They help blind and visually-impaired people move around by directing the person, stopping at kerbs until a command to cross is given and judging height so the owner doesn't bump their head.
Buddy dog on the beach Buddy dogs wear bright blue and are guide dogs that haven't qualified to work as mobility assistance dogs. They improve the quality of life of blind and partially-sighted children and young people by contributing to sensory and physical development.
Assistance in disability dog Assistance in disability dogs wear bright red. Like Canine Partners' trained dogs, they help disabled people with daily tasks but are trained up by living with their disabled owner.
Autism dog crossing the road with teenage boy and his mum Autism dogs wear blue and are trained by Dogs for the Disabled who also provide assistance dogs that wear yellow. They can help autistic children feel relaxed and perform a "head-rest" where they place their head on the autistic child's knee in order to provide comfort.

Assistance dogs can have "career changes". When training at Guide Dogs for example, a dog who displays acute smell may be recommended to become a medical detection dog, or sometimes they have excellent credentials as both a guide dog and a seizure alert dog giving them the potential to help somebody with both needs - a blind person with epilepsy for example.

Dogs which help people with anxiety and other mental health problems are beginning to emerge in the UK, though are more popular in the US. Presently these dogs are not covered by either the Equality Act or recognised by Assistance Dogs UK which oversees seven accredited assistance dog charities and organisations although and campaigners are hopeful this will change.

Assistance dog owners have equal rights laid down by the Equality Act 2010. With a dog they have rights to public services supplied by banks, shops, hotels, libraries, pubs, taxis and restaurants. It is against the law for assistance dog owners to be refused access to a taxi or minicab with their dog, unless the driver has a GP certificate showing medical exemption.

There are a number of charities and organisations that help to provide assistance dogs to people who may need them. Some dogs may wear the same colour jackets but can be identified by the writing on the bib. When in training puppies may wear different colours to their adult counterparts.

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Why's this access guide different?


Why is Euan's Guide, a disabled access review website and app, capturing attention and support where others have failed?

When Euan MacDonald became disabled due to Motor Neurone Disease diagnosed 10 years ago, he got frustrated that the only way to discover if a venue was fully accessible was by visiting it himself.

Married with two young children, MacDonald has a ventilator, speaks with a speech synthesizer and uses a powered wheelchair to get around

To help him, the family of the 39-year-old started to note down the accessible venues in his home city of Edinburgh. Soon they had the beginnings of Euan's guide, a disability review website and smart phone app.

at football

600 places have been reviewed by disabled people in 250 towns across the UK with 400 more reviews by the venues themselves. Six people now work for Euan's Guide, including MacDonald's sister Kiki MacDonald, who recently gave up her job in investment management to focus on the project because she's "passionate" about it.

It's a free service and there's no advertising because Euan's Guide is funded entirely by the MacDonald family.

It has been endorsed by JK Rowling whose mum had MS and Professor Stephen Hawking, who, like Euan, has MND.

Euan MacDonald hopes the guide will cut out hours of phone calls and research for users and that it'll remove the "fear of the unknown" when visiting somewhere for the first time.

He wrote answers to Ouch's questions using a computer system which he controls by eye movement:

What makes Euan's Guide different to all the access guides before it?

It allows users to visit new places with confidence, after learning from the experiences of someone with a similar disability. For example, I can find out what venues in Edinburgh another powerchair user has reviewed and learn what they thought of them. Another key difference is that we don't just feature accommodation, restaurants and tourist attractions - the site allows users to review places that they go to every day, such as stations, supermarkets and post offices - you can even review outdoor spaces such as parks or well-known locations such as London's Piccadilly Circus. Venues can give more detailed information on their accessibility features, like whether they have an induction loop, Changing Places toilet or offer relaxed performances.

The website
What is the future of Euan's guide?

The future of the site is being driven by the users. We're on the third version and with each new iteration, we are improving functionality and accessibility. the site is designed to work on different devices and different platforms and our app has been well received. We know that there is always room for improvement, but we do spend a lot of time testing the site to ensure compatibility with software such as JAWS and for different technologies including eye gaze, which I use. We also hope that the site could be a stepping stone towards digital inclusion. Perhaps some disabled people who don't currently use the internet might start if they know that a resource like Euan's Guide exists.

And beyond the site?

In terms of the guide, we would like to develop an offline community. We held our first Euan's Guide event a couple of months ago where we encouraged disabled people, their families and friends, to meet each other, make new friends and share their experiences of good & bad disabled access. We've also had days where a few of us have got together and reviewed venues, which was great fun. Finally, I'd like to invent a brain controlled wheelchair! This may sound futuristic and science fiction but it is currently being worked on by several universities.

  • Before Euan's Guide, MacDonald helped to establish the Euan MacDonald Centre for MND Research at Edinburgh University. Later, he helped launch the centre's Voicebank Study, which aims to generate a personalised voice for use in a comunication aid by people who will eventually lose the ability to speak.

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Too many charities, too much waste?

Somebody putting a pound coin into a charity tin

There are too many charities doing the same thing and competing unnecessarily, says the chief executive of a leading disability charity. So should it be made harder to register a new charity and is duplication really a problem?

"I wanted to weep recently when I heard the CEO of a charity very proudly telling me that along with the board and the management team he had spent a whole month reading aloud a book so that his charity had their very first talking book," says Lesley-Anne Alexander, chief executive officer at the Royal National Institute of Blind People. Speaking to the BBC she says: "It was a talking book which was already in the RNIB Talking Book library, it had been read professionally by an actor donating their time, was studio produced and is a very popular title."

"There are 2,000 veterans charities in the UK, that can't be right. 733 charities supporting blind people - we can't need that number."

Alexander recently spoke out in a lecture at London's Cass Business School blaming some of the duplication problems in the sector on the fact that too many new charities are set up as a knee-jerk reaction by people who have been affected by something they've seen, or something which has happened to them personally.

"Quite often people will set up a charity in the name of a loved one and I understand entirely those reactions but is that really the best way to use that energy and commitment?"

Start Quote

Small charities give you passion”

End Quote Andy Ricketts Deputy editor at Third Sector Magazine

Alexander says she would like the Charity Commission to introduce a stage in the form-filling to get people to research whether that help already exists before pouring effort into setting up what might be a duplicate project.

There are 160,000 registered charities in England and Wales, of that 21,120 are disability charities. The commission receives about 30 applications to start a new charity every week, though not all get established.

The bigger national charities have become more professional in recent years. They use their money efficiently and are likely to be very different from when they were founded. They are able to campaign and provide services at scale using centralised expertise and funds. So rather than set up new small charities, perhaps people should join in with a bigger charity's efforts instead?

Andy Ricketts, deputy editor at Third Sector Magazine, says: "There is an increasing awareness that charities need to operate efficiently and professionally and that the biggest charities are good examples of that. But other people in the sector would say that you can go too far and you don't want to forget the beneficiaries - which some people fear might happen if the operation becomes too slick and corporate."

Ricketts says that though some believe in rationalisation of charities, "others are on the 'let a thousand flowers bloom' side and say small charities give you passion".

RNIB The chief executive officer of the RNIB has said there are too many charities

He adds: "Who's to say that, just because there would be less duplication, this means that charities would achieve more?"

In June the Charity Commission updated their registration guidance document with a new step which, before anything else, asks potential applicants to "think carefully" before setting up a new charity. It suggests alternatives like volunteering for an existing charity, setting up a named donor fund with a Community Foundation or establishing a charitable trust with the Charities Aid Foundation.

The registration process itself has not changed.

In a recent open letter, Sir Stuart Etherington, chief executive of the National Council for Voluntary Organisations says it is not the role of the regulator to put barriers in the way, and adds: "I am in no doubt: I think people getting together to start charities is a good thing - such initiative helps to keep our sector fresh and evolving."

The NCVO chief places emphasis on the human desire to reach out and help others and wants to encourage it. Echoing his thought is Tracie Tappenden, director of VICTA, a national charity supporting blind children and their families. She says: "We encourage groups of parents in local areas to set up charities, that's not to take over the world but it's to be a charity in their own right. Maybe they've all got blind kids, they need a bit of support and they get that from each other. Becoming a charity helps them fund coffee mornings, outings and equipment and aids them in applying for further funding.

VICTA team Alexander said charities like VICTA could provide connected local support

"For us as a charity what we want to do is reach the kids and the families. That's our main aim," says Tappenden.

Smaller charities like VICTA and those they help can provide ongoing and more direct support, something that RNIB's Alexander recognises. Her vision is to create a federation of charities in the blind sector who can do what they do best locally but, she says, where the umbrella RNIB could provide support that works at scale like talking books or a campaign against welfare reform to avoid duplication.

Alexander's other contention is that competition doesn't help. Her charity bids for money to provide local authority rehab contracts, eye clinic support or provision of school places for multiply disabled blind children and more.

Citing an example where RNIB and Action for Blind People were both fighting for a local Department for Work and Pensions contract to help blind people back to work, she says: "We were the only two competitors for the contract and we were competing on price. So in effect all we were doing was driving down the price."

She says health and social care is already under-funded and by competing for contracts "all that [charities] are doing is colluding with the under-funding of services." Action and RNIB have since merged.

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Depression in business leaders

Dennis Stevenson headshot

The former chairman of HBOS, Lord Stevenson, says that, despite having made many big business decisions, the only really brave decision he has taken was telling people about his depression.

Lord Stevenson of Coddenham has had demanding roles in the past such as chairman of Pearson, and was chastised by the Banking Standards Commission over the 2008 collapse of HBOS, but says that though business can be very difficult, depression is the worst thing he has experienced.

"It was completely off-field and unexpected," says Lord Stevenson about his first bout of clinical depression almost 20 years ago.

"We go as a family to our cottage in Suffolk for most of August. I was driving down and the sun was out and it was wonderful. Next morning I woke up with literally a pain in my stomach and it turned into what is known to be anxiety."

Start Quote

I lose all self-confidence and I never believe I can get out of it”

End Quote Lord Stevenson

Within a week of experiencing the physical pain, he was diagnosed with clinical depression.

"There was no apparent reason for it," he says. "Everything in my life was lovely."

Lord Stevenson was chairman of HBOS between 2001 and 2009 and was at the helm during its "credit crunch" collapse. Much blame was attributed to him and other directors of the company and in 2009 he faced a Treasury Select Committee where he was closely questioned about decisions that were made.

But though this was a difficult time for him he says he did not suffer an episode of clinical depression during this period and is clear to emphasise the difference, for him, between mental illness and what might be described as unhappiness.

Find out more

The Bottom Line pic

The Bottom Line is broadcast on BBC Radio Four on 3 July at 20:30 BST - or catch up on BBC iPlayer

"[That time was] perfectly horrible and still is," he says. "There were sleepless nights and feelings of anxiety but it is not the same as clinical depression. Clinical depression is an illness. Unhappiness, whether because of something that has gone wrong at work or because someone has died or divorced is quite different.

"When I have clinical depression I get no pleasure out of any of the things I [normally] get pleasure out of. I lose all self-confidence and I never believe I can get out of it."

He says it is "presumptive" to think there must be an external factor - such as work - that causes an episode of depression.

"The big question is what does cause [these episodes]," he says. "The truth is we don't really know." He puts it down to a combination of biological and environmental factors.

But the mental health charity Mind says work can be the root of mental health problems. Recent research from the charity found it was the biggest cause of stress in people's lives with one in three people describing it as very, or quite, stressful.

Lord Stevenson facing a Select Committee hearing in April 2013 Lord Stevenson faced a Treasury Select Committee about the collapse of HBOS

Mind's chief executive Paul Farmer says: "Too often people don't speak up, fearing a negative response, which means they don't get access to timely support."

They also believe that there is a much closer link between unhappiness and depression noting that feeling low for a few weeks or recurring unhappiness could be a sign of depression.

Lord Stevenson estimates that in the top hundred companies a quarter of those running them have, or have had, mental illnesses, but few have openly acknowledged it.

Advice on telling people you have a mental health problem

  • Have courage. Courage is contagious. Often once mental health is out in the open people want to talk.
  • Keep it light. Keeping the conversation light will help you make you both feel relaxed.
  • Be prepared. Think about the different reactions, positive and negative so that you're prepared.
  • Choose a good time. Choose a time and place when you feel comfortable.
  • Be ready for lots of questions, or none. The person you are talking to might have lots of questions or need further information.

Source: Mind

He says people with certain mental dispositions are well suited to leadership roles.

"I have a saying that a lot of leaders are anxiety driven little shits," Lord Stevenson says. "Anxiety and the feeling of a need to prove things are very strong, the higher you get up the 'greasy pole' the greater the concentrations of certain kinds of illness."

Emma Mamo, Head of Workplace Wellbeing at the Mind charity, agrees that people with mental illnesses can make good leaders - as long as mental wellbeing is monitored.

"It's a common misconception that having a mental health problem is a sign of personal weakness," she says. "In fact, living with or recovering from a mental health problem can help people build up a variety of skills, such as resilience, self-awareness and empathy, that lend themselves well to effectively managing a workforce."

Lord Stevenson's experiences can be heard on The Bottom Line on BBC Radio 4 on Thursday 3 July at 20:30. It will be available soon after on the iPlayer.

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Three's an (accessible) crowd

Zoe with boyfriend Will Zoe Hallam was living with her boyfriend Will Iles in university halls of residence as well as having 24 hour care

If your partner is disabled, they might also have a full-time carer. So how easy is life with an outsider always in your home?

"It took me a while to get used to waking in the morning to see a stranger lift my girlfriend out of bed and dress her," says Will Iles, a market analyst from London. He and his girlfriend Zoe Hallam were living in halls at Oxford University back then and the situation with the stranger, her care assistant, was made even more cosy because it was a single bed the couple were sharing.

Hallam, a charity worker, hasn't much strength in her arms and legs and, in order to live independently, employs a small team of personal assistants to help with the things she can't do. Funded by government and her local authority, she has people on hand 24 hours a day, most days.

Start Quote

It got to the point where my daughter preferred to be with her, than with me”

End Quote Lizzy Gwilliam

Before they got together, Hallam had deliberately not told Iles about her needs and support because she was trying to make a good impression. "But when you go from being friends to being in a relationship, that barrier has to come down," she says.

When a disabled person with high care needs starts to date someone new, thoughts turn to how to get privacy and quality time with that person without losing independence or dignity.

Just days into their relationship, Hallam had to make a decision that most people don't have to think about. "Would it be more awkward for me to ring my carer to come and help me use the bathroom," she says, "or for this guy, who I've only been seeing for a week or so, to have to do it?"

In a family home, things get more complicated. Lizzy Gwilliam, a mother of two from Devon, describes on her blog what her personal assistants do. "[They are people who] you rely on, not for administrative duties but for ordinary things everyone does… getting food for your daughter, helping you on and off the toilet in a supermarket, or putting your hair up so you actually look a little less hedgerow."

Three people walking down a path, a woman, a man in a wheelchair and another man

Gwilliam, like Hallam, has a muscle-wasting condition and employs a number of assistants to help.

Her partner, Tom Bunton, needs her to be as independent as possible because he works full time. They choose new PAs as a team, Gwilliam says, because Bunton will also have to share his living space with them, and an assistant will be close to the couple's very young children. "They have to understand that it is his life too," says Gwilliam.

Though they may come into contact with family members, a personal assistant is there to help the disabled person and to facilitate them in all their roles, be that as an independent human being, a wife or a mother, and to understand relationship boundaries.

"When my first daughter was born, there was quite an awkward situation because my then PA overstepped the mark as far as parenting was concerned," says Gwilliam. "My partner found it very frustrating because he knew I hated the fact that she could get down on the floor with the baby whereas it's much harder for me to do that.

"It got to the point where my daughter preferred to be with her, than with me," she says.


Gwilliam manages her personal assistants day to day, while Bunton helps out with the considerable admin which comes with employing staff, including payroll and organising holiday cover. She says her partner wants to get involved when he sees things going wrong but he knows that Gwilliam has to be the one who manages awkward situations when they arise.

Zoe Hallam has had similar problems and says that in the past she has let lots of matters go because she doesn't like conflict; she says disabled people get used to things not being quite right, or that don't quite work. "I'm selective in what I fight about," she says, "otherwise, I suck it up".

Now four years into their relationship and having to negotiate around her carer, Hallam says that her boyfriend still isn't sure about who does what chores in the house. "He always feels bad leaving the washing up for the PA, and sometimes he creates a lot of it when he's cooking." Hallam says that, to share the load and make their relationship more equal, she reminds him it's OK to leave some work for her assistant because she would do those chores if she were able herself.

In order to have some private time alone as a couple, Hallam chooses not to have an assistant in the house at weekends - this is when her boyfriend takes over in the care role. "He knows more instinctively what I need," says Hallam, "but I can't expect the same speed of response as I'd get with a PA who gets paid."

Half of Zoe Hallam's care package is paid for by the Independent Living Fund, a central pot of money which the government has announced will be abolished in 2015. The funds have been "devolved" to councils who the government now says should pick up all care costs. The money has not been ring-fenced for this purpose, however, and campaigners are anxious it may result in them having a lower quality of life or being moved into residential care.

Gwilliam appreciates that bringing someone else into your home causes extra difficulties but that help is essential to her. "My partner's favourite thing to say is that having PAs is weird," she says.

"It isn't just like having someone come and stay. They see you every morning when you still have messy hair and bad breath. They help me do Tom's washing, even his pants. We are just used to it now and we get on with it."

Tell us your experiences of having a partner and a full-time carer. Email

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Powerchairs: A “moving” story

Dan Everard invented an electric wheelchair in the 80s which is still used today

In the early 80s, after doctors told Dan Everard that his 18 month old daughter would need an electric wheelchair, he was surprised and upset to find that a suitable chair didn't exist for very young children - so he set about making one.

As more and more people asked him to make one for them, he set up a company specialising in producing powered "wheels" that would follow a child from 18-months-old and which can also move them into a standing position. Now grown-up, his daughter, Ruth, runs the company alongside her father and helped to kickstart something of a revolution in how young kids move and behave.

Typically the NHS don't provide powered chairs for children under the age of five, and some have to wait until they're 12 to become independently mobile. Experts say the majority of development of under fives happens through exploring the world for themselves. They say children who do not get mobile before this age often are delayed and can develop an extra disability of "learned helplessness".

Click here for a non-subtitled version.

Video Journalist: Kate Monaghan

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The autism commute

A man looking quizzically down at the yellow line on the train platform An instruction such as "do not cross the yellow line" can be confusing for autistic people

Michael Barton, 22, has high-functioning autism and has just finished a degree course. He is currently promoting a new book - his second in three years, entitled A Different Kettle of Fish - A Day in the Life of a Physics Student with Autism.

It documents how he feels travelling from Guildford to London for a day out and the autism-related difficulties along the way.

Barton launched his book at the Manchester Autism Show where he also gave a talk which includes one of his pet subjects - how speaking metaphorically can confuse people on the autistic spectrum as they tend to take things literally.

He spoke to Ouch this week:

Is your book aimed at people with, or without, autism?

I was diagnosed as having high-functioning autism as a child but as an adult I have learnt to develop social skills and can communicate fairly well. Because of this I can relate to both people with autism and those without. I think my new book will give people without the disorder an understanding of what it is like. Autistic people focus on the details, all the little things and it can be much more difficult to understand metaphors and idioms. In my book I write what a journey from Guildford to London for a day out is like for me and the complexities of what people without autism think is a simple journey. So for example waiting at the train station the announcer might say "passengers must remain behind the yellow line", and when the train actually comes it is confusing then to cross the yellow line to board it. I've also published illustrations which show my understanding of phrases like 'you're pulling my leg'.

Michael holding his new book
What was it like having autism and studying physics at university?

I had a really good experience at university. I had more control over my environment so I was much happier there than at school. There was a strict timetable at school but during breaks there was no schedule at all - I didn't know how to deal with that. But at university I could control my own time much more. I liked that I could pursue subjects I enjoy, like physics which is excellent for me and really works with the way I think; it's logical. I didn't have to do subjects, like English which I really didn't like and found confusing. At school I struggled to make friends, you had to just go out there and talk to people and I couldn't really. At university I found it much easier. There are a variety of clubs where socialising is a by-product of the activity. For example I joined the rock climbing club. You didn't have to be particularly sociable when you were rock climbing but I met people and got on with them without it being the primary purpose.

Do you enjoy giving talks?

I really enjoy it actually. I spoke at the Autism Show in London recently and it went well. My talk is called 'how to fit squares into round holes' and I talk about what being autistic is like when a lot of people don't empathise. I like to focus on the positive aspects of being on the autism spectrum and try to teach people something. I really like it when people come away saying "I'd never thought of it like that". If people learn something at my talks then that will just make how they understand and empathise with me and other autistic people. I want people to realise that autistic people have a different way of looking at the world and often we can't automatically work things out. The biggest problem is people's lack of understanding. It's the same with my books, writing them, and having people read them, helps other people understand.

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The good old days?

A drawing of a one legged man attending the porters

Has the modern age actually made it more difficult for disabled people to find work? Disability historian David Turner says that although times may have been hard in centuries gone by, disabled workers sometimes enjoyed more equal rights than they do today.

Although welfare policy since Tudor times has provided for those incapable of labour either through age or impairment, documents show that disabled people expected, and were expected to, earn their living as far as possible.

Life was not easy prior to the Industrial Revolution, but the agricultural economy provided opportunities for people with disabilities to work in their own homes and at their own pace - something we often hear disabled people calling for today, so they can contribute and not be entirely reliant on benefits.

A painting of a cobbler with two prosthetics legs painted in 1789 An amputee cobbler in Bath, 1789

An account of the Shropshire village of Myddle written around 1700 described one of its inhabitants, Anne Parkes, as being unable to walk until the age of 19, because of rickets. She supported herself by knitting gloves and stockings.

A hundred years later, a survey of the poor inhabitants of Cumwhitton near Carlisle described a 45-year-old man with a "lameness" who earned "a little money" by making baskets and beehives to support himself and his elderly mother. His status as a caregiver reminds us that not all work undertaken by disabled people, either now or in the past, is paid.

The industrial revolution is often seen as a turning point for disabled workers. The coming of factories and heavy, mechanised industry, together with greater regulation of working hours and demands for increased productivity, meant that they were less able to compete in a labour market that was unresponsive to their needs.

But new research on Britain's coal industry challenges the extent to which disabled workers were excluded.

Coal production expanded to meet the demands of Britain's industrial cities in the 19th Century, and it was a physically demanding industry with high rates of accident and death.

A Victorian coal mine might be the last place one would expect to find disabled workers, yet there are accounts of miners with physical impairments working underground.

A coal miner with two prosthetic legs Welsh miner, Abercynon 1909

In 1865 an explosion at the Upper Gethin Colliery, Merthyr Tydfil, claimed more than 30 lives, among them brothers David and Griffith Ellis. As the miners fled the suffocating firedamp (flammable gases) that followed the blast, David turned back to fetch his brother who had a prosthetic limb. Sadly neither made it out alive.

In some areas miners worked in family groups. David Ellis had supported his brother, so they could both work at hewing coal.

One journalist described the lifeless body of the "poor lad with a wooden leg" as one of the most affecting sights of the disaster. But no reporter questioned the presence of disabled men working underground in a dangerous and demanding occupation, nor did they hail the amputee as "inspirational" in the way today's press might do.

Victorians differentiated between "total" disability that prevented a person from working - and thus made them liable for state support under the Poor Law - and "occupational" disability that prevented a person returning to their old job, but who was still able to work.

Men who were disabled in the mining industry may have been able to take lower-paid work on the surface, or even return underground as supervisors.

Thomas Haswell, killed in an underground explosion at Thornley Colliery near Sunderland in 1841, was an experienced coal hewer but had been working as an overman (supervisor) after breaking both legs in a rock fall the year before. Though newspaper reports of the disaster described him as a "cripple", Haswell's impairments may have marked him out as a survivor, earning the respect of the young crew who worked for him.

armless veteran of the Hotel des Invalides employed as a guide for visitors, 1883 Disabled veteran employed as tour guide, Paris 1883

Since the late 19th Century, disabled people have faced greater obstacles in the workplace. The expansion of legislation to provide greater compensation for injured workers, beginning with the Employers' Liability Act of 1880, hardened attitudes towards risk and made it less likely that bosses would take disabled people on.

At times of national crisis such as the two world wars, demand for disabled workers increased due to the lack of available labour. But in times of economic difficulty - the depression of the 1930s for instance - unemployment was high and disabled people were less successful at competing for jobs.

There is no evidence that disabled people in history have been unable or unwilling to work. Their ability to do so has depended on the structure of working environments, availability of resources, supply and demand in the labour force, and on the support and the attitude of employers, particularly towards risk.

Much more needs to be known about how disabled men and women fared in the workplaces of the past. The history of disability and work - paid or not - is not one of people heroically overcoming their limitations, but of the common struggle to get by.

Dr. David Turner is a historian at Swansea University. He was advisor on BBC Radio 4's Disability: A New History

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Right-to-die: For and against

Tony Nicklinson. His wife is in the background. The family of locked-in syndrome sufferer Tony Nicklinson launched a legal bid after his death to continue his right-to-die fight

On Wednesday, campaigners lost their latest appeal over the right to die.

The family of the late Tony Nicklinson who had locked-in syndrome and Paul Lamb who was paralysed in a road crash had hoped to change the law so that chronically ill or disabled people could be helped to die with the assistance of a doctor.

So what are the arguments for and against assisted suicide for disabled people?

Baroness Jane Campbell (against) opposes assisted suicide and wants to maintain the status quo. She is a disability rights campaigner and founder of Not Dead Yet UK, a network of disabled people in the UK who oppose the legalised killing of disabled people. John Grantham (for), whose partner Paul Hartland committed suicide while living with motor neurone disease, is in favour of a change in the law. Both explain their opinions below.

Baroness Jane Campbell

Campaigners for a change in the law on assisted suicide present it as an extension of choice, giving those with chronic illness or disability the same "right" to end their lives as the rest of the population. When any other person seeks to end their life, we do not assist them. We help those with suicidal thoughts look for positives in their lives. I believe chronically ill and disabled people deserve that "right", to be helped by us all to live their lives.

Baroness Campbell on a patio in her chair

As a severely disabled person, I fear a change in the law to permit assisted dying. Those arguing for a change do not offer any guidance as to who might be included or excluded from obtaining assistance. I have suffered illnesses that have brought me close to death and I am sure to do so again. Will the doctors who cared for me so expertly in the past, now be ready to offer an assisted death?

Many disabled people know first-hand how society fears illness and disability. Most people are concerned about being reliant on others for assistance. The media has done a service to us all by exposing neglect and abuse in hospitals and care homes. Such scandals always reveal the receivers of care have been dehumanised by the providers of care. Few would believe that every case of malpractice has been exposed or that abuse cannot also occur when care is provided within the family.

Many have seen loved-ones, particularly parents, become frail as their health deteriorates. The main reason given for wishing to die is not wanting to become a burden, whether their family would see it that way or not. Against this background, the "quick-fix" of an assisted death appears attractive.

It is precisely because that is the majority view that we must continue to oppose it. There is no better evidence of the negativity with which terminal illness, chronic illness, and disability is viewed than that we might be better off dead.

We would not give-up on a suicidal person in otherwise good health, we should not give up on a terminally ill or disabled person seeking an assisted death.

Two people holding hands. One is lying in a hospital bed with an intravenous drip.

If assisted dying is really a "right" (and I'm convinced it is not), it must be available to all, including the fit and well who consistently say they are suffering intolerably, not just those who find themselves in extremely desperate and challenging circumstances due to their deteriorating health. I didn't want Tony Nicklinson to die and I don't want Paul Lamb to die. I respect and value them. I want them to carry on disagreeing with me for as long as possible.

John Grantham

My partner, Paul, ended his life in March 2013. He was 35 years old and was suffering from motor neurone disease.

Paul would have preferred to have lived longer and opted for assisted suicide further down the road. Sadly that was not an opportunity available to him. From shortly after his diagnosis Paul became terrified of being trapped inside a non-functioning body and made it very clear that he would refuse medical treatment to assist him breathing when that time came.

Paul and John sitting at a table on a patio John Grantham's partner Paul (left) bought drugs online which he used to commit suicide

We initially discussed travelling to Dignitas; Paul joined the organisation and started donating money to them. However he didn't want to die in a strange environment and neither did he want me to be implicated in his death.

Paul committed suicide while he was still physically able. He was weeks if not days away from being unable to feed himself. I helped him to the lavatory and did everything for him but feeding himself was important because it meant he could still administer a fatal dose orally; which is what he did. He had bought drugs online from China which cost an extortionate amount of money. He deserved a better end.

I never got to say goodbye to him. He died alone and, of necessity, he never got to say things to me, his parents or friends, which I know he would have wanted to say.

It is important to note that at the time of his death there was much that he was still enjoying. He did not take his life because he was depressed. His options were to kill himself whilst he still could or to endure months, possibly years trapped inside his body. The only other option would have been to plead with his loved ones to end his suffering when he could no longer do so which, of course, he rejected.

Start Quote

Paul's body failed him but his mental powers never did”

End Quote John Grantham

He always said the greatest burden was knowing he had to end his own life and getting the timing right. If assisted suicide had been available I have no doubt Paul would have waited longer. Who knows, he may have allowed more medical help if he could have chosen to go when he was no longer taking pleasure from living.

Paul's body failed him but his mental powers never did. He did not want other people making decisions for him and, at the point when he could no longer move, be told his opinion and wishes are effectively irrelevant.

Assisted suicide is not about ending lives early, it is about giving people choices and I believe in many cases people would live longer and enjoy life more if they knew that their wishes could be fulfilled when no longer physically able.


Lord Falconer's Bill on assisted dying is scheduled for debate in the House of Lords in the next three weeks. It differs from assisted suicide as it is not about stopping ongoing illness or disability with which you can live. His bill applies to terminally ill, mentally competent adults. It also requires the dying patient, after meeting strict legal safeguards, to self administer life-ending medication.

For some disabled campaigners this would be a step towards the "slippery slope" which lessens the value of life. For others however this would enable people to have choice and control over the dying process when their death is imminent.

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