Comment is free interviews The crossbench peer and Paralympic gold medal winner talks about negative stereotyping and changes to disability benefits Oliver Laughland Elliot Smith Andy Gallagher

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Tanni Grey-Thompson: ‘A lot of disabled people are terrified of the changes to disability living allowance’ – video

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Changing the disability living allowance is not popular – but it is right. Ministers must hold their nerve Were I still an MP, I would dread the coming impact of the government’s disability living allowance reforms in my constituency.

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We can’t duck this reform of benefits for disabled people | Paul Goodman

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Why has former learning disability ‘tsar’ Ann Williams accepted a key position on the board of a new company taking over 249 former Southern Cross homes? Janet Snell finds out Earlier this month, residents at a Darlington care home held a “good riddance to Southern Cross” party when they heard that the ownership of their home was passing from the collapsed care giant to a new company

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Why a critic of institutional care is taking over from Southern Cross

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As the mother of two disabled daughters I thank Ricky Gervais and Stephen Merchant for the way they have highlighted discrimination and ignorance It’s been a decade since The Office appeared on our TV screens. The story of daily grind in a Slough paper merchants was so realistic that when I stumbled across it on BBC2 one night it took me a minute to realise that it wasn’t a documentary.

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Thank you Ricky Gervais and Stephen Merchant, for improving the lives of disabled people

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Knowsley has come out top in a study that reveals some local authorities are managing budget reductions much better than others. Mary O’Hara reports Knowsley council in Merseyside is a shining example of how, with a few “creative steps”, some local authorities are defying assumptions that budget cuts inevitably lead to worse services for disabled people. Its recently opened Centre for Independent Living was developed as part of the council’s health and wellbeing initiative and establishes direct partnerships between the NHS and social care services

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Scale of cuts has ‘no bearing’ on services for disabled people

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Ari Ne’eman rubs some people up the wrong way. Why? Because he is an outspoken autism campaigner who has risen to prominence in the US by demanding that policymakers and wider society stop trying to “fix” autistic people or “make us normal”, and concentrate instead on including people with the condition in the decisions that affect their lives.

Ne’eman, who is in the UK to give a series of talks, claims that for too long even the most well-meaning advocates in the US and in Britain – including parents – have been obsessed with moulding autistic people to fit with society’s expectations of “normal” behaviour.

Simultaneously lauded and vilified since founding the Autistic Self Advocacy Network (Asan) as a teenager just out of high school in New Jersey, Ne’eman, now 23, is a polarising figure. He stirred up controversy by suggesting that more research investment be directed towards improving support for autistic people, rather than towards finding a cure to eliminate the condition.

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The campaigner bringing people with autism to the policy table

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Uncertainty continues over whether the government is to go ahead with its controversial decision to cut mobility payments to disabled people living in care homes.

The minister for disabled people, Maria Miller, has stressed that the government intends to “make sure that disabled people continue to receive the support that they need”, but beyond that she did not make it entirely clear how this would happen.

The proposal has triggered considerable outrage since the government announced in October that it wanted to remove the mobility component of the disability living allowance for around 80,000 disabled people living in care homes from 2012.

The mobility funding helps disabled people meet some of the extra costs they face when they travel. Charities and relatives have warned that the government’s decision to remove it risked imprisoning residents within care homes, effectively institutionalising them.

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I won’t stop people in care homes getting out and about, minister pledges

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Raimund Hoghe’s Throwing the Body into Flight provided the title for one of the sessions at Lada's Access All Areas symposium. Photograph: Rosa Frank

It’s the art and artists who tend to be marginalised at so many conferences, but on Saturday they took centre stage at Access All Areas, a symposium created by the Live Art Development Agency (Lada). The two-day programme examined disability and how live art lies at the forefront of disability art practice, thinking and theory. Maybe it’s because disability itself is so marginalised in mainstream culture (as indeed is access to art by the disabled) that Lada was so stringent about refusing to divorce theory from practice, talking from doing. Live art has always been about breaking the rules, so it’s particularly well positioned as a platform for disabled practitioners.

So many symposia simply invite talking heads to deliver papers that you might just as well have read in the comfort of your own home. Not here. In many cases, such as Kim Noble’s account of his depression (including the making of a new Pret sandwich featuring “ham, anti-depressants and mayo”), the Disabled Avant-Garde’s response to the word “sick”, and Sean Burn’s reclamation of the language of lunacy featuring a “nutcase”, marbles and several walnuts, the presentations became performance. Never for a moment during discussion could you forget what was being talked about.

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Access All Areas: putting disability centre stage

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Disability benefit reforms: Minister undeterred by campaigners’ anger

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On a cold January day, Tali Janner-Klausner took to the streets crowded with fellow students carrying placards to protest over £30 a week.

The 19-year-old, a part-time student at City Lit college in London, felt the Education Maintenance Allowance (EMA) payments were worth fighting for.

“Some of the cabinet are millionaires and the government’s propped up by big business. They do not understand what £30 a week means to many people,” she said at the protest.

Similar sentiments may be heard in the coming months, as changes over relatively small amounts for welfare claimants prove to be a big deal.

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Great Britain’s para-athletes making progress

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Riven Vincent had no choice but to cry for help | Leah Wild

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Able magazine spoke with the Minister for Disabled People, Maria Miller MP, the day after the launch on the Coalition Government’s Consultation on the future of the Disability Living Allowance (DLA). As various disability organisations continue to give their initial responses, we would be interested in finding out what you think of the proposals and how they might affect your everyday lives.

WHY DOES THE COALITION GOVERNMENT WANT TO REFORM THE DISABILITY LIVING ALLOWANCE (DLA)?

We are completely committed to having a benefits system that will support disabled people, and the role of cash benefits is really important within that. Disability Living Allowance has a key role in delivering for disabled people.

Our concern is that DLA uses an assessment system which is very subjective; there is a real need to look at the complexities within the system which are making it difficult for those who are trying to understand whether they’ll be eligible for it – and indeed understand how they fill out the form and apply for it.

All of this, along with the fact that there’s not really a very good system of reassessment within the present process, means that we have a benefit which is not as specific as it needs to be at a time when we have more people applying and we have considerable pressure to make sure that every pound that we have available is being effectively used to support people who have the most needs.

HOW DOES THE DLA FIT IN THE COALITION GOVERNMENT’S WIDER AGENDA REGARDING BENEFITS REFORM?

What we’re trying to do with the consultation is to set out what we believe is an important reform of DLA into a new benefit which recognises the importance of making available cash benefits to help overcome the additional costs which disabled people have, and helping them to live more independently.

We’ve seen an increase in the number of people both claiming DLA – an increase of 30% in the last decade – and the case work in trying to define what is a very subjective assessment process. Neither of these is good news for disabled people who need to know what they can expect in terms of support – and have it.

THE CONSULTATION DOCUMENT SEEMS FAIRLY SET IN STONE: TO WHAT DEGREE WILL THOSE TAKING PART BE ABLE TO CHANGE ANYTHING?

We’ve got really clear objectives for our reform – we want to simplify the system, we want an assessment that is not subjective but objective, and we want a benefit that doesn’t act as a barrier to work, which is what happens at the moment.

In terms of the detail of how that assessment will work, that is still to be finalised; we have not completed that work, it’s continuing throughout this consultation period so that we are able to listen to incorporate thoughts that are put forward, which are offered to us by disabled people themselves or the organisations which represent them.

I’ve taken the very firm decision to involve people early in the process before the new assessment has been finalised, before we’ve agreed any of the detail – what’s set out in paper are the broad objectives and the broad way that we see reform going.

THERE’S ALREADY BEEN SOME HOSTILITY TO THE PROPOSALS, WITH PEOPLE SAYING IT’S CHIEFLY ABOUT SAVING MONEY. HOW DO YOU RESPOND TO THAT?

Well I had a meeting with a large number of disability organisations yesterday (Tuesday 7 December) and what I heard from many of them was the clear understanding that this benefit was in need of reform, and a clear understanding and agreement with the principles that we set out, which are: to make sure that we continue to use the social rather than the medical model; that it’s based on people’s needs rather than their condition; and that we continue to have a non-means tested benefit that is not related to participation in the work place. I heard very loud and strong support of that.

Clearly what organisations want to know more about is exactly the detail of how the (new) assessment will affect individuals. Our response to that is that we need to get feedback on this consultation, on people’s feelings about the way that we’re evolving this benefit.

Yes, we are looking at saving 20% of the Disability Living Allowance expenditure in line with the Chancellor’s commitment in the Emergency Budget. because we are in a financial crisis in this country and that affects everybody and every aspect of the work the Government does.

The assessment process that is used is clearly in need of  a significant overhaul and we have the opportunity of making sure that there is more cash in the system for people.

SO YOU ARE KEEN FOR OUR READERS TO GET INVOLVED IN THE CONSULTATION?

Absolutely; we’ve been very fortunate to have excellent support and help from a group of disabled people’s organisations, as well as healthcare professionals, in pulling together the outline of the way we’re moving the assessment forward. But the people who know how this benefit works close up, day in day out, are those who apply for it and receive it. I know from talking to those who administer the benefit, and people who are in receipt of it, that there are many things that people feel could be improved upon.

This is an opportunity to do it. It’s a very deliberate opportunity to relaunch a benefit which is misunderstood. Many people who receive the benefit feel that it’s a barrier keeping them out of the workplace – 80% of people receiving DLA don’t work. There’s confusion about who’s eligible; there’s complexity in the system – all of these things people can talk to us about, and look through our consultation to see whether they feel that we are addressing all of these issues. If they feel that there’s anything we’re not addressing, then I urge them to give us the benefit of their experience on that.

IS THE NAME-CHANGE MORE THAN JUST A REBRANDING EXERCISE?

Moving to something which is a Personal Independence Payment, I think, is the biggest indicator of the way we want thinking to evolve in this area. This isn’t about giving people an allowance and focusing on their disability; this is focusing on what we want for disabled people, which is personal independence and this is a payment which goes with that.

HOW TO RESPOND TO THE CONSULTATION

Consultation Document can be downloaded in a variety of formats from: www.dwp.gov.uk/consultations/2010/dla-reform.shtml

Closing date: 14 February 2011

Responses can be sent by post or email:

Postal address:

DLA Reform Team,

1st Floor, Caxton House,

Tothill Street,

London,

SW1H 9NA

Email: consultation.dlareform@dwp.gsi.gov.uk

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Miles Hilton-Barber doesn’t really understand the word ‘limit’. It just doesn’t fit into his way of thinking. For most, doing a parachute jump or running a marathon would rank amongst their greatest achievements – and that’s fair enough… Miles, however, has completed 40 skydiving jumps and ran marathons across deserts and the icy plains of Siberia, oh yes and he’s cage diving with Great White Sharks and recently walked to the South Pole.

I rang Miles on a Monday morning expecting to find him, like the rest of us, waking up from our weekends, perhaps nursing a morning coffee with the daily papers. It didn’t quite work out like that… In a rather ‘I’m down the shops’ tone, Miles told me that he was making a descent down a mountainside…. “Do you want me to call back?” I asked…

“No, no, it’s OK as long as the signal lasts it’s alright… Let’s talk.”

When did you first think about going to the South Pole?

I was doing a run across the Sahara desert and we were looking for something different to do at the end of it. Well, we’d done a ‘hot one’ so we decided – let’s do a ‘cold one’… So let’s head to the South Pole.

That takes quite some organisation doesn’t it?

Yes it does. The big thing that I’ve found in my life is that the important thing once you’ve had a dream, is that you’ve got to plan and then the biggest thing is to make a decision. Once you’ve made a decision. Once you’ve decided to do something then everything falls into place. A lot of people have these dreams but as someone rightly said: “if you wait until you’ve overcome all obstacles, you’ll never attempt anything”. I’m a great believer in that. Once we’ve made a decision, as long as you commit it’ll start to happen.

Did anyone try to talk you out of it?

Yes, it’s a very common thing. I was working for a charity at the time and a lot of my colleagues said “you’re crazy, blind people can’t do that. It’s never been done before.” So again, I find it’s important only to share dreams with people who’ve got a big vision about life. There’ll always be people telling you that you can’t do it.

Where do you draw your confidence and belief from?

What changed my life initially, at the age of fifty, was my brother Geoffrey – also totally blind. He sailed a yacht, solo from Africa to Australia, totally blind, totally alone relying on speech output on his navigational instruments. He was 53 days in the southern Ocean from Durban to Freemantle in Western Australia. That what made me realise that the only thing holding us back is ‘five inches’, that’s the distance between our ears. So he was my inspiration and the more I found out, also the more I wanted to do. It made me realise that I can do other things, so I got more and more confident.

The signal then gave out on us. I called Miles back a little later…

We’re travelling – should have a stable signal now… Just having a break today, nothing special, just taking advantage of the terrain…

How do you keep hold of your positive attitude?

The big thing for positive people to remember is not sharing your dreams with people who are basically negative. There’s a Chinese proverb: “He who says it is impossible should not interrupt he who’s doing it”. I work on the premise that even though something might not have been done before it doesn’t mean to say that it’s any more difficult than if you were the 2nd or 52nd person to do it.

Was the South Pole the toughest adventure you’ve undertaken?

Certainly the loneliest expedition I’ve ever been on and the most desolate in terms of having no support if something goes wrong. But other ones, crossing deserts have been physically more demanding. Sometimes in extreme cold it’s easier to get warm than it is to cool down in extreme heat, so they’re all tough. Certainly from a mental point of view the hardest thing about the South Pole is just day after day and week after week with nothing to see and you can’t talk to anybody and just hauling a sledge.

I had a sited guide with me and we had two other people who were linked with us. So it was just my sited guide and I on the walk.

Does the South Pole expedition rank as your highest achievement?

You know, they’re so varied. I suppose in many ways it would be. Mountaineering is something else that’s also very difficult for a blind person, although other blind people have done it, whereas, I was the first blind person to attempt the South Pole. My most recent endurance test was flying a microlite from London to Sydney, it was sort of different, in that it was partly technology based. Certainly it was quite dangerous at times – flying in extreme storms but again I had a sited co-pilot as a backup. It was the first time a blind pilot had the back up and technology to fly and navigate.

How do you cope with a setback?

I tend not to give up. The trick in life is to realise that bad things can happen to anybody despite the best laid plans of mice and men; things can go astray. The trick is to simply analyse the situation and find another way through. Sometimes when lots of things go wrong at once people think – “Well that’s an indication that you’ve got to stop” but it doesn’t have to. I’ve been on a scuba dive where loads of things went wrong as I was diving but it was still safe. It was enough to just eliminate things as they came up and to continue with the dive. Once you’ve experienced the fact that you can do more than you think you can, the next time you hit what everyone says is a barrier and everyone says that you can’t go on. Actually, it just means that no one else has gone beyond that point before but I think that TS Eliot the poet said that “Only those who will risk going too far can possibly find out how far one can go.” The big thing I say to people is that you’ve got to get out of your comfort zone, get out of your circle into no- man’s land and try things that have never been tried before. That’s the way new things happen in the world and you’ve got to be willing to be that person to do something new. Very often when things go wrong you’ve got to make a decision by yourself to carry on and even though other people say you can’t, you can still choose to carry on and end up doing something that even ‘you’ weren’t sure you could do.

What’s next?

This time next year – all being well, going back to Death Valley to do another run through it in the middle of summer. I did one a few years ago but didn’t do so well. I’ve done four ‘desert ultras’ but this one I didn’t do so well on. I want to go back. I’ve got some unfinished business.

You’ve got 28 hours to cover 135 miles through Death Valley with a climbing altitude gain of over 14,000 feet going over mountain ranges, and such is the time of year when the air temperature coming off the road is about 200 degrees Fahrenheit. So you’re talking about extreme conditions but a great experience.

You seem to think of each of your adventures as having given you something unique…

Yes, if you draw a circle around you which represents everything you’ve done in your life up until today. Every time you do something new, you step outside the circle but you can’t take that new experience and pull it into your circle because there’s no room. It’s full of your past experience. So your circle has to grow to embrace that new experience. So even when I fail- things like climbing Mont Blanc, for instance – we didn’t reach the summit, got caught in a blizzard and five climbers died in the storm around us, so to us success was surviving but it still makes your circle bigger. So even failure and negative experience will still make your circle bigger and make you a wiser person and able to look at life differently as a result.

Any regrets?

I suppose the only regrets I shall have at the end of my life are of the things I haven’t attempted. It’s just as Roosevelt said: It is not the critic who counts: not the man who points out how the strong man stumbles or where the doer of deeds could have done better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood, who strives valiantly… in the end, the triumph of high achievement, and who, at the worst, if he fails, at least he fails while daring greatly, so that his place shall never be with those cold and timid souls who knew neither victory nor defeat.”

A lot of people would go to the circus and just sit and criticise what’s going on in the ring but I’d much rather be in the ring and fail. At least I’ve attempted something. Possibly the one idea that sums up a lot of my thinking is that the only limits in your life are those you accept yourself…

What kind of message would you like to pass on to Able readers?

The recipe for success in life is simply 4 steps: dream, decide, plan and persevere. So have a dream. The key thing is that many people have dreams but do nothing about them. You’ve got to make it happen. Once you’ve made a decision such as wanting to go to the South Pole, you’ve got to go for it.

At that moment the signal fails and ringing back just puts me onto answerphone. I guess you can’t catch a whirlwind…

www.mileshilton-barber.com

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