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Archives for July 2011

News update: CFS, muscular dystrophy, self harm

Emma Emma | 16:11 UK time, Friday, 29 July 2011

The BBC's Tom Feilden reports this morning that scientists working on alternative treatments for Chronic Fatigue Syndrome, also known as ME, have received death threats and been subjected to a campaign of intimidation.

Scientists have said that the campaigners object to any assertion that CFS could be connected with mental illness and are critical of the money or research time given to this area.

CFS was classified by the World Health Organisation as a Neurological illness, rather than a psychological condition, in 1969. A link between CFS and a retrovirus called XMRV was reported in the Science paper in 2009, but retrovirologists have since been unable to replicate these results.

Many people living with CFS, and those who treat them, are in no doubt that it is a neurological condition and would prefer government money were spent on biomedical research.

Some messages sent to scientists involved in exploring alternative CFS therapies were read out on the Today Programme this morning. (the report contains some strong language)

"To those of you who are responsible for preventing us sick, ME sufferers getting the help we need, wasting five million pounds on flawed bulls**t, you will pay."

Scientists have shared the emails due to fears that the campaign is causing researchers to discontinue their studies relating to chronic fatigue syndrome.

Action Now, a patient-driven initiative which aims to make neuroimmune disease advocacy more accessible to sufferers and their loved ones, wrote a campaigning letter to Andrew Lansley earlier this year. In it, they stressed the need for money to be ring fenced for a biomedical approach.

"There is an acute need for research into this disease, largely due to the remarkable lack of funding to date. No significant disbursement has ever gone into funding biomedical research into ME and yet this debilitating disease afflicts an estimated 250,000 people in the UK."

Dr. Chris Shepherd, medical advisor to the ME Association, who has experienced the illness himself, told Today's Sarah Montague that the only biomedical research carried out around CFS has been funded by charities.

Elsewhere in the news

Doctors begin major stem cell trial for MS patients
Australia probes self-harm by asylum seekers
Castlebeck care 'concerns' raised by regulator
Duchenne muscular dystrophy drug "exciting"
Jersey to get anti-discrimination law
Guardian Comment Network: David Cameron is stuck in a timewarp on disability benefits. by Declan Gaffney
Ofcom demands better service for disabled customers
Fit-to-work tests a 'flawed process', MPs say
Welfare to Work policy 'casts the disabled as cheats'

Ouch! Talk Show 74: Laurence Clark is a health hazard

Damon Rose Damon Rose | 11:47 UK time, Friday, 29 July 2011

"We used head pointer gadgets before you ever did", Laurence Clark's Edinburgh Fringe show and The Kids of Widney High are our unsigned musicians. Mat Fraser and Liz Carr present.

Listen or subscribe to the show by following this link

Read a transcript.

Mat Fraser and Liz Carr

• Liz unearths a picture of a new smart phone product which, for all the world, looks like a head wand pointer that disabled people used to use a lot. Prompting a discussion about how the mainstream market is waking up to the benefits that disability inspired gizmos can bring.

Laurence Clark

Laurence Clark's Edinburgh Fringe show 'Health Hazard' looks at how disabled people fare in the competition-driven health service in the USA and imagines a less disability friendly NHS should reforms take place here. Lots of comedy there, then? A great interview.

• The cast of Glee join us. Oh no, sorry, I mean The Kids of Widney High, all the way from Sunset Boulevard in LA. We talk to them and hear their track 'Life without the cow'.

Coming soon

An hour long summer special will hit your ears and hit your mp3 players in early August. Golf, swimming and not offending people with a speech impairment appear to be on the agenda (Rob's idea). Presented by Liz Carr and Rob Crossan.

BBC TV and Radio this week: horticulture as therapy and inspiration for the big society

Dan Slipper Dan Slipper | 10:46 UK time, Friday, 29 July 2011

 

Jennie Murray

 

This week during Woman's Hour Jennie Murray found out about a pilot scheme to treat depression with a course in gardening.

 

Other highlights:

Listen - Radio 4 - Blind Man's Bete Noire
Peter White is joined by Adrian Mole author, Sue Townsend, now blind herself, to discuss another one of his 'betes noires'.

Watch - BBC Three - Small Teen, Bigger World

Jazz celebrates turning 17 and her birthday is extra special because it is the first one she has spent with her father Paul. He wants to mark the occasionwith a gift for his daughter but Bev - Jazz's mum - is horrified when it turns out to be a snake which will grow to be bigger than both of them.

Listen - Radio 4 -In Touch

The programme examines the impact of NICE's decision not to approve a drug used for treating diabetic macular oedema, a condition that affects 50,000 people in the UK. Plus an access technology update.

Listen - Radio 4 - Face The Facts
John Waite investigates the 'scandal' that has left up to 1.5 million people addicted to drugs prescribed to them by their GPs.

Listen - Radio 4 - Archive on 4
Did EF Schumacher's landmark book Small Is Beautiful inspire David Cameron's big society idea?

Coming Up

Watch - BBC Three - Small Teen Bigger World - Monday 1 August 21.00

Jazz learns to drive in her own modified car and works in an American animal hospital.


Catch up with disability radio & TV programmes on the BBC every Friday at this blog.

Disability news: Rebekah Brooks, Oscar Pistorius, Winterbourne View

Emma Emma | 15:05 UK time, Friday, 22 July 2011

The phone hacking scandal dominated headlines this week, leaving little room for anything else. But as Ouch! has proven time and again, disability is everywhere.

Able Radio, a Welsh station which focuses on disability issues, has offered ex News International Chief Executive, Rebekah Brooks, a job. They have described the voluntary position as an opportunity to "rebuild her career".

Station manager Malcolm John said, "We, to date, have no evidence she has ever been embroiled in any story that is negative to disability".

Listeners, who met the suggestion with "near-universal disapproval", will be pleased to note that Rebekah Brooks has "politely declined" the offer via her PR representative.

The other big disability story this week was amputee athlete Oscar Pistorious sprinting to victory in Italy. The runner, who wears carbon fibre blades instead of his regular prosthetic limbs while racing, knocked half a second off his personal best.

He described it as a "dream race" and the win makes him eligible to compete against non-disabled athletes in the World Athletics Championships next month. It also puts him within the qualifying time for the London 2012 Olympic Games.

Oscar Pistorius

Pistorius, 24, is the double below-the-knee amputee world record holder in the 100, 200 and 400 metres and has four Paralympic gold medals. But in the past his endeavours to race along side non-disabled athletes have been met with varying levels of support.

In January 2008, the International Association of Athletic Federations released research which compared Pistorius with six non-disabled athletes capable of a similar performance. The study claimed that his famous carbon fibre blades allowed him to use 25 percent less energy than his counterparts. He argued that he was disadvantaged by having less blood in his body and no calf muscles.

Five months later, the Court of Arbitration for Sport ruled that the report was inconclusive and cleared him to compete.

Soon after the ruling, Oscar, who The Guardian describes as "an icon on and off the track" failed to achieve the qualifying times for the 2008 Beijing Olympic games, which makes his most recent win all the sweeter.

Elsewhere in the news

Castlebeck workers suspended in hospital probe
Bubble baby syndrome risks for children of cousin marriage
Government delays welfare reform bill
Care home closures will create an uncertain future for many
CQC says it was misled by owners of 'culture of abuse' at Winterbourne View

BBC TV and Radio this week: comedians, antidepressants and a snake

Dan Slipper Dan Slipper | 09:40 UK time, Friday, 22 July 2011

Alex Lewis was first diagnosed with bone cancer shortly before his 18th birthday. After over three years of intensive treatment, he realises he is running out of options and decides to cram as much as possible into the time he has left.

Alex Lewis

His story is told in Alex: A Life Fast Forward as part of the Extraordinary Me season of programmes on BBC Three.

Other highlights

Watch - BBC Two - Adam Hills' Comically Challenged
Comedian Adam Hills sets out to prove there is a place for disability in stand-up comedy.

Watch - BBC Three - Underage and Pregnant - Abby and Riley
Teenager Abby is juggling motherhood and studying for 13 GCSEs. She is determined to get qualifications and provide a good future for her disabled son.

Listen - Radio 4 - Front Row
Amadou and Mariam are one of Mali's greatest musical exports. The blind couple have forged a musical and personal partnership which has won them a worldwide following. With their producer, Marc-Antoine Moreau, they have created Eclipse - a new show about their lives which the audience will experience in total darkness.

Listen - Radio 4 - In Touch
The programme investigates the latest technology from Sight Village, an exhibition for blind and partially sighted people, and a film that shows blindness from a teenager's point of view.

Watch - BBC Three - Kellie: The Girl Who Played With Fire
Kellie O'Farrell became permanently scarred on her face and hands due to a car fire when she was just 2. Now, at 22, she's leaving home to start a new life in London. How will she cope?

Listen - Radio 4 - Woman's Hour
A new survey shows that a third of women have taken antidepressants at some point in their lives. Jenni Murray asks whether they are too ready a solution for busy GPs.

Also on Woman's Hour
Exploring the art and relationship of disabled artist Frida Kahlo and Diego Rivera as their work is exhibited together for the first time in the UK.

Coming Up

Watch - BBC Three - Small Teen, Bigger World - Monday 25 July 2011 21.00
Jazz celebrates turning 17 and her birthday is extra special because it is the first one she has spent with her father Paul. He wants to mark the occasion with a gift for his daughter but Bev - Jazz's mum - is horrified when it turns out to be a snake which will grow to be bigger than both of them.

Catch up with disability radio & TV programmes on the BBC every Friday at this blog.

Tweeting disability: Sara Cox, disturbing hair, Cystic Fibrosis

Emma Emma | 14:53 UK time, Thursday, 21 July 2011

This week, Twitter's disability fraternity is mostly talking about deafness and communication.

Sara Cox

Radio 1 DJ Sara Cox found herself in a bit of hot water with the deaf community this week when she Tweeted:

"How daft is this? I'm at flicks & bridesmaids is gonna have subtitles. I morphed into my dad & asked if we got any money off. If I was wearing specs I could've put a strip of black gaffer tape across the bottom to block them out."

There followed a barrage of angry Tweets from the deaf community, including Lianne Murphy's which was quoted in The Telegraph
"Uh-oh you're in trouble with the deaf-ies. We aren't to be messed with. Get some respect and realise how lucky you are to HEAR!"

The Sun and the Mirror also ran the story, which sparked a conversation around a need for more subtitles in UK cinemas.

Sara Cox has since apologised, adding that sometimes her "random musings aren't thought through".

Elsewhere in the Twittersphere

The guy doing the signing on BBC News at the moment has very disturbing hair. I wonder if sign language users find it distracting.
Unreliable Witness, @uwitness

For me I take a total communication approach. I sign, I speak, I lip
read and I use my hearing aid. I want to communicate to ALL people.
Marlee Matlin, @marleematlin [Oscar-winning deaf actress]

People with CF should not hang out together, or sit together and do interviews. This is madness, although personal choice. #FRUSTRATION
Orla Tinsley, @orla_tinsley a young Irish woman living with Cystic Fibrosis.

Comically Challenged

Emma Emma | 10:25 UK time, Wednesday, 20 July 2011

On UK television this summer, the hottest disability in town appears to be restricted growth. Tonight, Comically Challenged joins the list of programmes we've already blogged about, Small Teen Bigger World, Seven Dwarves and Life's Too Short, featuring people of short-stature.

Adam Hills and Phil Searle

The show follows Aussie comedian Adam Hills, who has an artificial foot, as he spends a week with Phil Searle. Married with two children, Phil is a belfast-based actor with achondroplasia. Due to related walking difficulties, he uses a mobility scooter to travel long distances.

During their time together, Adam says he learned a lot about Phil's particular type of dwarfism.

"The main thing that stuck with me was how much physical pain is associated with achondroplasia. Phil told me he has to take around fifteen pills every morning to get through the pain. And he does it before his kids wake up so they don't have to hear him swearing. I always saw dwarfs as being height restricted, but I never knew how many other physical hurdles there are to get through as well."

Adam's mission throughout Comically Challenged is to create a stand-up routine for a Belfast audience, about short-statured people. He based it on his observations of Phil as he performed daily tasks like putting on a duvet cover and hanging out the washing.

Most surprising to Adam however, was how often Phil gets mistaken for other short-statured people while out and about, described previously on Ouch! as the disability doppelganger effect.

"He said he is always stopped by people who claim to be friends with him, but he has no recollection of meeting them. An hour after telling me that, a guy stopped us in a shopping mall, shook Phil's hand and said 'Chris, how are you?'. They chatted for ten minutes, and after the guy wandered off, Phil turned to me and said 'see? I've no idea who he is'."

By all accounts, Phil and Adam both learned a thing or two during the making of comically challenged. Adam's lesson was around that old chestnut, staring.

"My highlight was when I realised that the worst thing you can do when someone with a disability catches you looking at them is to instantly turn away. Tanyalee Davis [a comedian of restricted growth] said she thought it was because people were appalled by her. I told her it's because we felt guilty about looking. Later that night I saw a young girl in a wheelchair and instinctively looked away when she looked at me. So I waited for her to look back and I smiled. She smiled back, and went on her way, and it was an immediate recognition that it's ok to look at people, all people, just follow it up with a smile."

And Adam recalls Phil's realisation that other disabled people also use humour to lighten the mood.

"He ran over my foot with his mobility scooter. He apologised, and I said 'Don't worry, it was the fake one, I didn't feel a thing'. He laughed his ass off, then I think he realised that we both do exactly the same thing - use humour to make people feel less awkward about our disabilities."

Catch Comically Challenged, on Wednesday the 20th of July, 10 PM, BBC Two Northern Ireland and afterwards on iPlayer .

Apprentice winner Tom sees his dyslexia as a positive

Emma Emma | 11:35 UK time, Tuesday, 19 July 2011

Tom Pellereau, winner of the seventh series of the UK Apprentice, joins Richard Branson on a long list of entrepreneurs with dyslexia.

Tom Pellereau

Following Sir Alan Sugar's decision on Sunday, Tom said that for him, dyslexia has always been a positive.

"I discovered I could do things better than other people. If I had an idea, I could visualise it in my brain and spin it around.

"I was so lucky that computers came out when I was starting to write essays."

On The Apprentice:The Final Five, Tom's mum spoke about how his disability has made him an innovative problem solver.

"The advantages of dyslexia are that you are much better at adapting. You can go underneath or over the top of a problem and not take the direct route ... Tom's good at that."

31-year-old Tom describes himself as an inventor. His final business plan for Lord Sugar involved office chairs and he claims to have created the world's first curved nail file, but maybe Mr. Pellereau's near future is in the studio rather than the boardroom.

A source described as a "telly insider", has been quoted in today's Sun as saying that Tom Pellereau may get his own science and technology show.

"Executives have been really impressed with the way he came over on TV. He is probably one of the most personable Apprentice winners and something of an underdog, which always goes down well with the British public.

"The BBC would love to do more with him. There is definitely a gap in the market."

This week's news: jobs, benefits, cancer

Damon Rose Damon Rose | 11:12 UK time, Friday, 15 July 2011

This week's disability news is, again, dominated by jobs and benefits.

On Monday the government launched a consultation off the back of Liz Sayce's report on specialist disability employment programmes after publishing their response which broadly accepts the findings.

Let's look at the meat of the report. Sayce, chief exec of the campaigning charity Radar, acknowledges that the Access to Work scheme is one of the government's "best kept secrets" and is cheaper and more effective than sheltered work in Remploy factories. On average, ATW costs £2,600 per person whereas some factory placements cost around £27,000 per person and can be low on productivity to boot. Undoubtedly these are compelling figures.

Some may be wondering if the government's acceptance of the report is about progress, money or a happy collision of both? It's a new world and disabled people should not work in segregation is the central message. In a comment piece in The Guardian this week, Liz Sayce put the full case for the personalised approach:

A Job Centre computer screen

"Disabled people's aspirations have changed. We want the opportunity to work in every sector from hairdressing to engineering, to "get in" through apprenticeships and work experience, and to "get on": progress in our careers and set up our own enterprises. We want to contribute to the economy. The only adjustment
most of us need is a fair chance, or low cost flexibilities (such as not travelling in rush hour) - but some need support, extra training or equipment. The support must focus on the person so we can move from job to job and take our support with us."

A lot of disabled people instinctively like the idea of workplace inclusivity and employers are seemingly becoming more open to hiring disabled people albeit slowly.

So, how can we speed this up?

Well, Sayce suggests that ATW recipients and funding need to double and, as there is no new money available for this, money could be found by withdrawing the funding from Remploy's factories and also residential training centres.

BBC News reports that the GMB union is unhappy that 54 factories may close with 2,800 people potentially put "on the dole".

But Sayce's review was broadly popular with disability organisations like Mind, Mencap and the Disability Alliance; separate special employment has long been unfashionable.

Are there unintentional casualties in this plan, though? The consultation aims to find out.

It's clearly important for government to be looking at employment solutions for disabled people if they are also forcing essential council services to end, are changing the rules on Employment Support Allowance and cutting benefits like Disability Living Allowance by 20%.

And on that thorny subject of DLA turning into PIP (Personal Independence Payments), and possibly evaporating for some, charity reps met with Minister for Disabled People, Maria Miller, recently but are reportedly unsatisfied because their agenda seemingly hit the floor. Again.

Chief Exec of Scope Richard Hawkes, who was not at the aforementioned meeting, said: "How can you decide that [a reform] is going to save 20% in advance? I would think that this is driven by cost reductions, and that they have come up with a way of assessing people that will result in the cost savings they want to make,"

Maria Miller told The Guardian that reform needs to happen because the present benefit, DLA, has no ongoing assessment of how good or bad you are at a given point. "Little wonder there are £600m of overpayments and £190m of underpayments," she said.

Other headlines this week

Health charity says four in 10 people will get cancer (BBC News)

Has Lady Gaga finally taken things too far? Singer is slammed by disability groups after performing on stage in a wheelchair (Daily Mail)

Doubling NHS spending is affordable (Telegraph)

Abuse inquiry at another Castlebeck owned care home in Bristol: staff suspended

Asthmatic mothers-to-be and their babies at greater risk of health complications (The Guardian)

Remploy factories for disabled workers could all close (The Guardian)

Comment: 'I don't like being a guinea pig - but I want that [cancer] vaccine' (Telegraph)

Southern Cross set to shut down and stop running homes (BBC News)

BBC TV and Radio this week: life changing journeys and things which get up your nose

Dan Slipper Dan Slipper | 11:37 UK time, Thursday, 14 July 2011

 

Jazz Wakefield-Burkitt and Bev Burkitt

 

Jazz and Bev Burkitt recently appeared on the Ouch Talk Show to discuss their new series on BBC Three Small Teen Bigger World.  It follows on from last year's Small Teen, Big World and sees Jazz embarking on an important personal journey as she leaves her home in Colwyn Bay to study animal welfare at a residential college and meets her father for the first time.  (Broadcast Monday nights but you can still watch it online for a few more days.)

Other notable programmes include:

Listen - Radio 4 - Blind Man's Bete Noire

In a new series Peter White explores some of the things which 'get up his nose' about blindness. The four programmes include The Countryside, Holidays,Being Introduced To Other Blind People and Going Slowly.

Watch - BBC Three - Underage and Pregnant - Abby and Riley
Teenager Abby is juggling motherhood and studying for 13 GCSEs. She is determined to get qualifications and provide a good future for her disabled son.

Listen - Radio 4 - You And Yours
Peter White examines how disability employment and Access To Work could be improved; guests include Maria Miller, Minister for Disabled People.

Listen - Radio 4 - In Touch
What's the best way to get the message about visual impairment across? Author Redmond Zsell's takes a rather novel approach.

Listen - Radio 4 - Britain's Labs

Professor Iain Stewart talks to scientists and clinicians working at the Centre for Regenerative Medicine lab in Edinburgh about their efforts to treat diseases using stem cell technology.

All these programmes are now on iPlayer although, please note, they may only be available for a limited time.

Coming Up

Watch - BBC Three - Small Teen, Bigger World - Monday 18 July 2011 21.00
In the second episode of the series, Jazz's granddad undergoes surgery and she must come to terms with the prospect of losing him.

Catch up with disability radio & TV programmes on the BBC every Friday at this blog.

Tweets of the week - disability style

Emma Emma | 10:05 UK time, Wednesday, 13 July 2011

140 characters don't give you much to play with but these Twitter users have given us some interesting disability insights in the last week.

If we can't find a way to make braille technology affordable, I don't see our literacy rate growing anytime soon.
Alena Roberts (@blindperspectiv)

Communication tips: when talking to a lipreader, speak clearly, at a regular pace, don't over-emphasise words, and make eye contact.
CreativeEyes,
(@creative_eyes)

Coffee definitely tastes purple here. Synaesthesia. Just something about the brew I think.
Sarah Ward (@GentleChaos)

Look Supre, I know you probably didnt make 'jeggings' with chicks in chairs in mind but... #accidentallyaccessiblefashion
Stella Young (@stellajyoung), editor of ABC Ramp Up.

• You can find us on Twitter as @bbcouch - tweet us or email us and suggest who we should follow and why. We may post your suggestions for public consumption here.

Maria Miller and Liz Sayce discuss Access to Work

Damon Rose Damon Rose | 13:07 UK time, Tuesday, 12 July 2011

The government has responded to Liz Sayce's report on specialist disability employment programmes by launching a consultation this week.

Liz Sayce, chief exec at Radar, recommended that Access to Work become more widely available and that more money go into it. Money could be found, she suggests, through decreasing funding to 'less effective programmes' like Remploy and residential training colleges.

Liz Sayce and the Minister for Disabled People, Maria Miller, joined Peter White on yesterday's You and Yours programme on Radio 4. Here is a transcript of their discussion.

Read the rest of this entry

Ouch! Talk Show 73: Jazz and Bev Small Teen Bigger World

Damon Rose Damon Rose | 15:47 UK time, Monday, 11 July 2011

Who should we ban from accessible loos? Plus the star of Small Teen Bigger World, Jasmine Burkitt and her mother Bev. Mat Fraser and Liz Carr present.

Listen or subscribe to the show by following this link

Read the transcript.

• Which disabled people can legitimately use an accessible loo? Mat and Liz shoot the breeze off the back of the news that footballer Wayne Rooney reportedly used a toilet set aside for disabled people at the Glastonbury Festival in June.

Bev Burkitt and Jasmine Wakefield-Burkitt

• The stars of BBC Three's encore fly-on-the-wall documentary series Small Teen, Bigger World join us to talk about the filming, how they got spotted and why they're anxious when they see fellow short people dressing up as goblins and gnomes.

• Catch their series Monday nights at 9 pm, part of BBC Three's Extraordinary Me season. In four parts, starting July 11.

• The original show Small Teen, Big World aired last summer and became the channel's most watched programme ever, a record which was only toppled in the past couple of months.

Coming soon: The next show comes out around July 25 and features comedian-activist Laurence Clark. He'll be here to talk about his Edinburgh Fringe show where he visits America to explore what could happen to the NHS if it is made competitive.

Keeping your mental health safe online

Emma Emma | 17:23 UK time, Friday, 8 July 2011

Social online media and forums can be a great way of keeping in contact with like-minded people, but there is little information aimed at helping adult mental health service users to keep safe in these spaces.

Negative behaviour on any site, including specialist online communities, can impact on your wellbeing. So we've put together some general suggestions about keeping yourself safe and well while online, with help from two mental health service users, who have experienced the good and the bad of the medium.

Facebook

Privacy settings

Know your privacy settings.

- Online privacy is a big issue for many.
People who are coming to terms with a diagnosis, or even those with long lived experiences of mental health problems, may not be too happy about shouting it from the rooftops.

- It is relatively simple to be anonymous on sites like Facebook, as long as you familiarise yourself with its privacy settings. If you don't configure them, the world can see all your information and read your updates. Some people choose not to use their real name on social networks.

- Facebook asks you for lots of information but doesn't force you to share it with the world. You don't even have to tell the truth about where you live.

- When you update your status, there's an option to choose which of your friends gets to read it.

A cup of tea

Take five

- If you find that you are feeling in the least bit stressed, annoyed or bewildered at what you are seeing, take some time out. This might involve deep breaths, counting back from 10 in a different language or any anger management techniques familiar to you. If this doesn't work, move away from the situation. Have a cup of tea, or if you are unable to leave your computer, go to another board or play a game like solitaire until you feel ready to rejoin the conversation.

- If the content of conversations becomes troubling, such as people talking about self harming or suicide, walk away altogether. Avoid the triggers that could upset you and make you dwell on negatives.

- Distract yourself. Get some immediate support when you are feeling shaky, why not go to an instant chat site or talk to a friend on your instant messenger of choice.

Think before you write

- If someone has disagreed with you or you feel you are being antagonised, before you hit reply, look at it from the outside. Do they have a point?

- Don't assume anything about anyone. Not everyone is a native English speaker, for instance, and could therefore misinterpret a situation.

- Never make bold statements when feeling vulnerable. Use short and clear sentences to avoid ambiguity. It is very difficult to get emotions across when typing into a keyboard, and sometimes a phrase might mean different things to different people.

There's always an off switch

- If something is triggering you, don't read it.

- On specialist forums, posts which may aggravate your particular mental health issue, are often flagged up with the word 'trigger' or the letter 'T' in the subject line. So if you want to be super safe and avoid getting into a discussion that could make you unwell, these forums are a good place to go because they give you advanced warning of what not to look at.

- many sites have their own measures in place to combat harassment.
If you feel you are being unfairly provoked, use the site's report button [if they have one]. And if you need it, There's invariably an off switch. You can also usually see who is logged in, which can help to avoid people who may have caused you distress in the past.

An   Image from the RethinkTalk board


These tips were taken from conversations with two online community hosts.

Ian is one of the lead moderators of mental health charity Rethink's online community, RethinkTalk. He has many years experience creating, running and using online disability communities and as a member of mainstream social networks.

Ashley, 15, is a moderator on the Young Minds' Very Important Kids community. This is aimed at young people who are experiencing a mental health problem. She has had difficult times while online but remains a fan of social networking.

General Safety and cyber bullying advice for children and worried parents is readily available via a simple search. these general guidelines show you how to protect your personal information and give practical, step by step instructions on what to do if you feel you are being harassed on Twitter or Facebook.

If you, or someone you know, is having suicidal thoughts while on Facebook, you can report this to The Samaritans via their page.

Always seek doctors advice if you have a history of mental health difficulties and are aware that online communications can affect you negatively. This blog entry should only be seen as general advice.

Read: Finding mental wellbeing advice on the web - tips from BBC Webwise

A selection of news and comment on the week's top disability news stories

Emma Emma | 16:13 UK time, Friday, 8 July 2011

The cost of care

A report from Andrew Dilnot's Commission on Long Term Care was released on Monday to mixed reaction.

In the Guardian's Jo Public blog, Melanie Henwood praises the report for taking into consideration the probability that younger disabled people might be less likely to have a financial nest egg.

"The commission's approach is unequivocal - by and large people aged under 40 will get all their care for free. This recognises that most people who have a lifelong or acquired disability will have had few opportunities to build up wealth because they are less likely to be in employment or to have incomes that allow them to plan for future needs. People who do have assets (such as through inheritance) will still benefit from the cap on total personal contributions and will often be better off than is presently the case."

But the Telegraph's Patrick Nolan writes: "By proposing a model built around the need for people to take responsibility for their own costs of care, the report makes an important contribution to the debate. Yet the proposals it contains are too expensive and will require revision to be seriously considered."

And here's his maths:

"... the cost of health and care (before today's proposals) is projected to increase by £40 billion (in today's money) by 2041 and the cost of pensions is projected to increase by £32 billion. Adding the Commission's proposals onto this (projected to account for an additional £3.6 billion by 2025) will mean a total increase of cost around £75 billion a year."

Back with the Guardian. A Government spokesperson comments "We genuinely like this report, which has clever and innovative ideas... But it does come with a price tag."

The spokesperson went on to acknowledge that the report has suggested a range of options and trade-offs that now need to be debated with the stakeholders.

No overnight care for ex ballerina

68 year old Elaine McDonald has been fighting to have a carer to help her use a commode during the night but she failed to secure it in an appeal to the Supreme Court. Kensington and Chelsea council has offered incontinence pads to the former ballet star instead, making a reported saving of 22 thousand pounds a year.

Miss McDonald OBE has mobility and bladder difficulties caused by a stroke she suffered 12 years ago. She needs the bathroom up to three times during the night but, crucial to this case, she is not incontinent.

The Daily Mail carries Lady Hale's response. From the panel of five judges, she was the only one who voted sympathetically towards Miss McDonald.

She said: "I am troubled by the implications of the (majority) view. A person in her situation needs this help during the day as well as during the night.

"Logically, the decision of the majority in this case would entitle a local authority to withdraw this help even though the client might be left lying in her faeces until the carers came in the morning."

John Wadham, group director at the Equality and Human Rights Commission, the is reported by BBC as saying this ruling will mean that: "Local authorities will now have greater discretion in deciding how to meet a person's home care needs and will find it easier to justify withdrawing care.

"The court has missed a significant opportunity to interpret the law to protect some of the most vulnerable people in society."

Elsewhere in the news:

Disability Alliance legal move over welfare changes
Unsafe havens: care homes are branded fire hazards.
Disability travel concerns raised by the Trailblazers campaigners
The Wing's Speech: How Leroy Cudjoe , one of the UK's top rugby league players, came to terms with his stammerAndrea Bocelli: 'no connection' between my blindness and singing.

Disability Alliance threatens legal action

Emma Emma | 14:22 UK time, Friday, 8 July 2011

Disability Alliance announced on Saturday that it has begun a formal legal process against government disability benefit and service changes, by issuing a 'letter of claim' to the Department of Work and Pensions (DWP).

The letter suggests that if the government does not address the concerns of disabled people before the impact of proposed cuts is directly felt by the community, the DA will have no option but to take legal action to obtain a judicial review of the plans.

Maria Miller, Minister for Disabled People

In response, Minister for Disabled People, Maria Miller, said: "We are still only part of the way through this process ... I think some of the concerns that have been expressed are second guessing what the outcome will be and probably creating a great deal of concern where perhaps there is no necessity to have that concern."

Claudia Wood from the Demos think-tank blog doesn't agree and is exercised by announcements around the proposed replacement for Disability Living Allowance, said to be a more positively focused Personal Independence Payment (PIP).

"It is true the PIP plans are not firmed up. But like NHS reform, the government's 'listening exercise' and subsequent amendments seems to be in direct relation to the level of public protest. For example, scrapping DLA mobility component for those in residential care was put on hold (not dropped) after a massive outcry ...

"... So if the government's 'listening mode' involves testing the limits of what people will accept and then stopping just short of it, why should the Disability Alliance stay quiet until the plans have been set in stone?"

Demos recently published Destination Unknown and Counting the Cost, two surveys the think-tank has undertaken with disabled people during the PIP consultation period.

Follow the story as it unfolds at the website and keep up with all the DWP's latest stories here.

• The Disability Alliance, a national campaigning charity and membership organisation, has been in existence since 1974. Much of its work has been around providing telephone advice to members and producing written information on tax credits, benefits and social care for people with disabilities. Members include individual disabled people and big charities such as Scope and RNIB.

BBC TV and Radio this week: epilepsy and gardening

Dan Slipper Dan Slipper | 09:53 UK time, Friday, 8 July 2011

During Bookclub on Radio 4 this week, James Naughtie talks to William Fiennes about The Music Room, his account of an extraordinary childhood growing up in the family castle with his brother who has epilepsy.

Other notable programmes include:

Listen - Radio 4 - All In The Mind
Claudia Hammond finds out what makes some people more likely to become problem gamblers, the power of gardening to improve mental health and the power of metaphors to shape our thinking.

Listen - Radio 4 - In Touch
What arrangements are being made for blind sports fans with Olympic tickets? Plus, the programme explores Audioboo - a form of social media which helps you make your own recordings and broadcast them.

Listen - Radio 4 - Four Thought - Penny Pepper
Writer and cabaret artist Penny Pepper gives her perspective on human identity from her experience as a disabled person and wheelchair user.

Listen - BBC Radio Scotland - Pioneers
Politician David Blunkett talks about how failure was simply not an option during his rise to high office. He talks openly about the isolation of attending boarding school from the age of four as well as the trauma of losing his father at the age of twelve.

Listen - Radio 4 - It's My Story - Letting Go Of James
Severely autistic 16-year-old James is starting full time residential care. This programme follows him and his family as they prepare for and adjust to the change.

Listen - Radio 4 - Dead Fishes
A young man with Down's Syndrome admits to killing his mother but then a woman turns up claiming a different story.

All these programmes are now on iPlayer although, please note, they may only be available for a limited time.

Coming Up

Listen - Radio 4 - Blind Man's Bete Noire - Monday 11 July 2011 09.30
In a new series Peter White explores some of the things which 'get up his nose' about blindness. The four programmes include The Countryside, Holidays, Being Introduced To Other Blind People and Going Slowly.

Watch - BBC Three - Small Teen Bigger World - Monday 11 July 2011 21.00
A follow up to last year's BBC Three documentary Small Teen, Big World, this series sees Jazz embarking on a life changing journey by leaving Colwyn Bay to study animal welfare at a residential college and meeting her father for the first time.

The African Forum on Blindness

Emma Emma | 15:10 UK time, Wednesday, 6 July 2011

A blind person reading braille

Right now in the Ghanaian capital Acra, 350 blind and visually impaired people from thirty countries across the continent, are attending the fifth African Forum on Blindness. National and international organisations supporting people with sight loss and relevant assistive technology companies are also represented.

The theme for this unique week-long conference is "Access Africa - Exploiting the Full Benefit of Social Inclusion of all Persons".

Insight Radio, an RNIB run station of particular interest to blind people, has sent two reporters along. Throughout the event, Steven Scott and Robert Kirkwood have been chatting to a whole range of blind and visually impaired Africans about life as a blind person in their society and their hopes for the future.

All of their interviews, including a piece with Starlight Vocal Band, a group of VI musicians from across Ghana, are now available to listen to or download from the Insight Radio website's dedicated Africa Forum page.

Tweeting disability: a birthday, disabled jokes, noisy walking

Emma Emma | 16:15 UK time, Tuesday, 5 July 2011

Four twitter users get straight to the heart of disability life, 140 little characters at a time.

Too many comics use disablist insults without thinking twice, when they wouldn't use racist or sexist ones. Worth thinking about.
Richard Herring @Herring1967

Happy Birthday #NHS - without you I'd be dead from childhood infections, or now wouldn't have the treatments I need for #MS and other things
Margo Milne, @MargoJMilne, commenting on the fact that the National Health Service is 63 years old today.

Most thrilling find so far archiving old tapes, trial of audio describe porn from 2000
Sunil Peck, @sunilpeck, blind journalist.

Late for one of my bestfriends wedding watching from outside :) cause I walk way too loud to sneak in.
Maysoon Zayid, @maysoonzayid, US comedian with cerebral palsy

Homeless and disabled in Los Angeles

Emma Emma | 14:38 UK time, Tuesday, 5 July 2011

This morning, on 5 live's Up All Night, the BBC's Los Angeles correspondent, Peter Bowes, reported on the plight of the city's homeless veterans.

According to the Veterans Association, six to eight thousand live on the streets of LA, many with mental health problems and other disabilities. In this very detailed look at the situation, Peter Speaks to homeless vets of all ages from 23 to 67, based in the Skid Row area of LA, and to representatives from the organisations set up to help them.

Click to listen, the report is just over 20 minutes in length.

A music festival for all

Emma Emma | 18:16 UK time, Friday, 1 July 2011

The Watchers

On Saturday 2 July, two thousand people will descend on Whickham, Tyneside, for the Chase Park music festival. A plethora of top local bands are expected to perform.

It's a one day event, with stalls and activities to suit the whole family, and best of all, entry is free.

On the surface this might look like a well organised community event, with a surprisingly strong musical line-up which includes local crowd pleasers The Lake Poets and Mausi. But it's an event with a message.

From concept to clean-up, the music festival has been organised in full by disabled people from the region, with help from Whickham Villa, which primarily supports people with acquired brain and spinal injuries, and the Percy Hedley Foundation, one of the area's largest disability charities.

it may have been conceived by disabled people and be taking place in the grounds of Chase Park rehabilitation centre, but there's a broader target in its sights. Alastair McDonald, director of Whickham Villa, the company which owns Chase Park, is keen to explain its universal agenda:

"Although our festival is organised and attended by many people with disabilities, it is based on the idea of a mainstream event that is inclusive, accessible and enjoyed by everyone in the whole community."

Martin Longstaff from The Lake Poets has a family member with motor neuron disease and is pleased that festival entry is free and fully accessible.

"I have relatives that live with a varied range of disabilities so understand the challenge of attending music festivals. With this in mind, this is a fantastic initiative in terms of giving people of all abilities the chance to be part of such a cool event that costs them nothing and has the facilities to cater for anyone."

Nick Hedley, who has an acquired brain injury, is the compre and seems like the perfect person for the job.

"When you see people who are drunk, it's because alcohol has damaged the sells in their frontal lobes. I've got a permanent two bottle of wine effect. this means that my inhibition level has dropped so I'm less nervous than I would be otherwise. I've researched all the bands and intend to introduce them in a humorous and encouraging way."

As well as music, the festival bosts a holistic therapy tent, market stalls and an education centre, where kids can learn about disability and get an insight into the human brain. Being in the grounds of a centre supporting people with acquired brain and spinal injuries, the entire festival venue is completely accessible and the organisers claim that there's something for everyone, whatever your age or disability.

Follow Chase Park music festival on Twitter throughout Saturday, using the hashtag, #chaseparkmusicfestival. And watch and listen out for live festival reports from Look North and BBC Radio Newcastle.

In the news: Ryan Cleary, Katie Price, the cost of social care

Emma Emma | 17:27 UK time, Friday, 1 July 2011

Keeping you abreast of disability related stories

Accused hacker Ryan Cleary has Asperger's syndrome

Last weekend it was revealed that Essex teenager Ryan Cleary, accused of hacking into systems at the Serious Organised Crime Agency, was diagnosed with Asperger's Syndrome while in custody. Parallels have been drawn between his case and that of Scottish hacker Gary McKinnon, who is currently fighting extradition to the US after being accused of hacking into NASA.

on Monday, the day the 19 year old was released on bail, His mother Rita told the Telegraph that they knew Ryan already had ADHD, agrophobia and Emotional Behaviour Disorder.

She said her son is obsessed with the internet and that he had threatened to take his own life when she had previously tried to confiscate his computer.

Ryan's bail conditions include a strict curfew and a ban from using any device which has the ability to connect to the internet; something we can reasonably assume is likely to cause him great difficulty.

Katie Price stands up for her disabled son Harvey.


Katie Price


Last night, Katie Price: Standing Up for Harvey, was broadcast on Sky Living. It was described by the Mirror as "a frank account of the stigma and discrimination that goes with raising a disabled child".

The article goes on to quote from the documentary, as the glamour model mum discusses everything from her wish to keep Harvey at home rather than in residential care, his medication regime and her hopes for his future.

In the documentary, which will be repeated on Sunday, Katie and Harvey also spend time with other families with disabled children, sharing their experiences.

They invite controversial comedian Frankie Boyle to a meeting in the hope he apologises to them both for jokes he made about Harvey's disabilities, which received 500 complaints after they were aired on Channel Four. I don't think it's too much of a spoiler to say that Frankie wasn't overjoyed with the idea.

The cost of Social Care:

The BBC reports that next week an independent review will recommend an overhaul of the support given to the elderly and adults with disabilities.

Head of the review, Andrew Dilnot, said that Ministers in England must not shy away from coughing up more money to fix the "broken" social care system.

According to BBC health correspondent Nick Triggle, Dilnot "is widely expected to recommend a cap - perhaps as much as £50,000 - on the amount the individual pays so that those who face extremely high costs do not end up losing everything.

He said: "At the moment, the support provided by councils is means-tested so that anyone with assets over £23,250 has to pay for all the costs of their care."

Elsewhere in the news this week:

•A case taken by a partner at PricewaterhouseCoopers alleging he was discriminated against on the grounds of disability, has been dismissed.
The BBC reports that during hearings, e-mails sent between partners at the firm discussing Colin Tenner's absence due to mental stress and depression were read out. One of them said: "real partners don't get sick".

The tribunal judged that some senior partners "were clearly at the end of the queue when tact and sensitivity were being handed out", but added that it did not believe Mr Tenner had been treated any differently than someone who didn't have a disability.

BBC Politics reported this week on a scheme set up by the advocacy organisation RADAR, which aims to smooth the access to dialogue with a member of parliament, by their constituents with disabilities.

The article says: "with so many disabled people worried about looming welfare reforms, there has probably never been a better time for a scheme that aims to get more of them face-to-face with their elected representatives."

A mother of a man with learning difficulties explains it is important for disabled peple to have the opportunity to visit their MP, as many issues will affect them differently to the general public.

•From the Guardian's Comment is Free section yesterday, wheelchair user Scott Jordan-Harris opines on the case of 12 year old Declan Spencer. Declan is the boy with muscular dystrophy who hit the headlines this week when Ezyjet refused to fly him to a family holiday in Cyprus because his 90 KG powerchair cannot be dismantled.

Declan is about to have spinal surgery which, the Daily Mail reports, will mean that he will most likely never travel by air again.

Glastonbury: Music or 'disabled' music?

Guest Guest | 15:26 UK time, Friday, 1 July 2011

Reporter Rob Crossan was at last weekend's Glastonbury Festival where he soaked up the atmosphere and 'took the disability temperature' for want of a better way of putting it. Here's the report he sent us.

So we came, we saw, we got our wellington boots encrusted with finest Somerset sludge and ate vegetarian wraps of highly dubious progeny. And for anyone who came in a wheelchair, Glastonbury 2011 was a four day exercise in seeing if the 'all terrain' guarantee really was worth the paper it was written on.

Judging by the woman I saw attempting vainly to rev her way out of a particularly viscous patch of muddy gloop near the Pyramid stage last Friday, it's probably fair to say that there's a few e-mail complaints lodged within the in-box of some leading wheelchair makers right about now.

The disability camping area was bigger than ever before this year, and arriving by motor home for the first time (my eco-credentials lie in tatters) the attempts by the endlessly patient stewards to get everyone in whilst battling conditions of increasing boot sucking muddiness on day one, was nothing short of heroic.

There were around 430 people in the Spring Ground disability camp site but the huge increase in juggernaut sized motor homes and decrease in old school VW camper vans meant that the area felt more packed than it ever has been.

'Crips' aplenty were spotted all over the festival but, on the basis of my utterly random and unscientific vox popping around the disability campsite, almost 'none' of them were aware that there was an entire afternoon of music by artists with disabilities on the Club Dada stage on the Saturday afternoon.

Promoters Attitude is Everything decided not to mention in the programme that the artists they'd booked all had disabilities: a tactic which many would agree makes a certain degree of sense.

For many non-disabled attendees, the idea of trekking to the far corner of the festival for a 'disability all dayer' whilst nursing a colossal hangover, isn't an easy one to sell. And whose fault is that? 'Society' my friend.

The Saturday afternoon binge of Club Attitude bands and DJ's started so well. Long time Ouch! Talk Show favourites Captain Angelo and Heavy Load both delivered sets to decent size crowds of around 50.

Heavy Load went around the crowd before their set to get suggestions of things to shout out during their freeform Pistols style anthem 'Everything is B------s'.

I think my suggestion of 'The Only Way is Essex' got a mention, but the bilious guitars made Simon Barker's vocals all but unintelligible - in the best possible punk spirit of course - by this acclaimed band of musicians with learning difficulties.

Mile Alex Peckover performing at Glastonbury 2011

Captain Angelo singer Miles-Alex Peckover looked the spitting image of Richard Thompson circa 1971 with full beard and tatty red v-neck. His band's Belle and Sebastian esque fluttery gems seemed to scatter clean cotton sheets and mugs of soothing hot chocolate, over the begrimed crowd. And if you are a regular listener to our talk show, you'd know that at least one and a half of the band members are happily lounging somewhere on the autistic spectrum.

And then, suddenly, everyone disappeared.

Deaf Rave tried their best with some actually rather superb throbbing electro but the only person dancing was my photographer, Gordon. In fact, the two of us were the only people in the entire tent by that stage.

Bigger than in previous years, the mini Epcot Centre dome, complete with huge model of Earth and the moon hanging from the ceiling, suddenly felt larger than the Olympic Village in Stratford.

A couple of people hung around for a few minutes during the following DJ set from Tom and Stella OBE but, for my snapper and I, the notion of continuing to dance in an uninhabited tent as the afternoon wore on was becoming slightly embarrassing.

Rob Crossan at Glastonbury 2011

So why was so much great music ignored by so many?

Let's go back to how it was promoted. Not emphasising the fact that the artists on stage had disabilities is to be lauded - after all, why should that be the most important thing about them? When do we stop having to tell the world there's stuff wrong with us, and all that?

But is the idea of mentioning that these bands and artists have disabilities really such a bad thing? Creating talented role models could be seen as a positive development, especially if, like Heavy Load, their message is about as far from the patronising notion of being 'special' as it's possible to get.

In attempting to rid the likes of Captain Angelo and Deaf Rave from being labelled, the result was that disabled festival goers and their friends didn't appreciate there was a unique selling point to this event. Had they known, there may have been more bums in tents. And playing a set to nobody out of a potential audience of nearly 200,000 must be a little soul destroying for all concerned.

You can hear the organisers of Club Attitude's stage on Ouch! Talk Show 71 - where they discuss the challenges and successes of Glastonbury prior to this year's festival.

BBC TV and Radio this week: deteriorating vision and an insight into prejudice

Dan Slipper Dan Slipper | 11:37 UK time, Friday, 1 July 2011

A highlight on television this week was Imagine on BBC One on Tuesday night. During the programme Alan Yentob meets clinical neurologist and author Dr Oliver Sacks to investigate the myriad ways we experience the visual world and the strange things that happen when our mind fails to understand what our eyes see. Doctor and patient combined as Dr Sacks talks about his childhood, his struggle with face blindness and the loss he felt when eye cancer recently destroyed his 3D vision.

Other notable programmes include:

Listen - Radio 4 - An Interior Life
The intimate story of a hospital consultant with Asperger's syndrome and his struggle with alcoholism. The programme charts his journey from a rural upbringing to academic and professional acclaim when a series of family illnesses intervened which meant his, once modest, drinking started to become a cause for concern.

Listen - World Service - Outlook
A disturbing insight into prejudice against disabled people in the UK.

Listen - Radio 4 - In Touch
Peter White asks whether there are too many charities for blind people and talks to the Chief Executive of the RNIB about why she would like to see more mergers within the sector.

Listen - Radio 4 - Shall I Say A Kiss?
Morris Davis was born deaf in 1898 in Whitechapel in London. In 1924 he moved to New York but on a visit to the UK in 1935 he saw a photo of Eva Weintrobe - also deaf - and went to Liverpool to meet her. He soon proposed but before a date could be set he had to get back to New York. So began an unusual transatlantic romance and courtship conducted through the exchange of letters now dramatised in this play.

All these programmes are now on iPlayer although, please note, they may only be available for a limited time.

Coming Up

Listen - Radio 4 - Dead Fishes - Friday 1 July 21.00
A young man with Down's syndrome admits to killing his mother but a woman then turns up claiming a different story.

Listen - Radio 4 - It's My Story Letting Go Of James - Sunday 3 July 13.30
How one family copes as their 16-year-old autistic son starts full time residential care.

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