Tuesday, 29 July 2014

Disability, Let's Talk About The Barriers

The Fabian Women's Network invited Disability Rights UK to send someone along to their event to discuss and debate “Disability, Let's Talk About The Barriers”, so I went, and I did.


I said that Disability Rights UK doesn’t want to see the debate framed in terms of “inclusion for the ill and disabled” or in terms of “the damaging narrative in which the most vulnerable are demonised and blamed rather than supported and included”. The problem with such a framing is that it risks portraying disabled people as one group who are all passive recipients of care and it doesn't do enough to recognise that disabled people can make important contributions to society.

Personally, I think it’s important to make more of a distinction between different experiences of disability. It’s important that we come together as ‘disabled people’ to unite on significant campaigns for rights, like rights to independent living; but we also need to understand our differences. Disability clearly encompasses enormous variety and any categorisation is problematic. But broadly there are people with severe impairments or health conditions, who need a lot of support and major adjustments to be able to participate in society; and people whose impairment, with simple adjustments or even none at all, mean they can take part much more easily.

Of course some impairments are permanent, some fluctuating, some progressive; and attitudes towards people with different impairments differ as well (for instance, attitudes towards someone with schizophrenia are different to attitudes to someone with a hearing impairment – both face barriers, but the barriers are different). 

Disability Rights UK talks of people with lived experience of disability or long-term health conditions – to give a sense of this variety.

For me, after being at Disability Rights UK for three years, I still find that if we talk only about "disabled people" we can risk downplaying our differences. If we do that, people may have an image in their mind of who a ‘disabled person’ is – perhaps someone with a permanent physical or sensory impairment. I am concerned about the many people who live with pain, fatigue, severe confusion, depression, the most significant learning disabilities and autism and also other challenges from homelessness to alcohol or drug problems.

Disabled people are great contributors to our society – for instance, are twice as likely to be informal carers as non-disabled people – but we cannot assume that there is just a minor barrier to remove and full participation will flow.

People who just need straightforward adjustments can work and contribute if they have the right support. A big “if”, of course. But people living with major pain, fatigue or confusion face far greater challenges. They may not be able to work (either temporarily or permanently), or only be able to with intensive individualised support and major adjustments (for instance, annualised hours – so you can work when you are able to and not when your condition is bad – an arrangement that can work for some types of work, and could be expanded to suit people with fluctuating conditions). 

Millions of people of course have this experience of being unable to do much short-term: people who are laid up in bed for a week with flu or laid up in hospital for a fortnight after an accident. But if you are living long-term with a health condition, you may need care and support long-term; and face challenges in being able to contribute fully.

I would like to see greater recognition of the fact that there is a group of disabled people who will need long-term care and support; and will need intensive, and sometimes expensive, support to be able to make choices and participate in society. Someone with significant dementia, for instance, can make choices about important day to day issues if offered options in creative ways (not necessarily through language).

Next, I said that Disability Rights UK doesn’t want to see the debate framed in terms of “barriers” either. There is something negative and disempowering about the term even though it is used with the best of intentions to highlight the multitude and magnitude of the problems that disabled people face everywhere they turn: on transport, at work, in education and at leisure.

It's true that disabled people have had rights under the Disability Discrimination Act of 1995, which are now under the Equalities Act 2010, which are meant to have swept away the barriers created by employers and others. Not that this has happened across the board, of course – though thanks to disabled people Britain is more accessible than it was 20 years ago.

But the term "barriers" frames the problem as something for “them”, the employers and providers and others, to deal with and remove for the sake of "us", the disabled people. Instead of thinking in this traditional way, we could also think in new creative ways about how to deal with the barriers ourselves. That fits in with the discourse about independent living and personal control.

I’ll give two examples, one from history and one about disability. The Maginot Line was a huge defensive barrier built by the French on the border with Germany to stop future invasions. But when World War II came, the Germans simply went around it.

The disability example is somebody with a visual impairment who can't read everyday printed material. Rather than requiring a public service provider to give them information in large print or Braille, for example, they could influence the provider to ensure their website is accessible (sadly some websites still aren’t) and then use text-to-speech software so that they could listen to all of the material themselves. That way, they've both solved the problem themselves and influenced change in a provider, they've empowered themselves and maybe they've found a creative solution that can help other people as well. This approach depends on thinking up creative solutions and on turning barriers into opportunities. It is easily said and hard to do, because creative thinking is sometimes in short supply.

The third point I made was in response to the outline from Kate Green, the Shadow Spokesperson for Disabled People, about Labour's plans to change the Social Security system for the better as Labour bids to win the 2015 election. She talked about reforming the work capability assessment among other such things. It all sounded potentially pointless to me given that Ed Balls has declared that Labour would not reverse any of the Coalition's austerity cuts and has agreed with the welfare cap that George Osborne proposed in his latest Budget. This is a limit on the amount that can be spent on benefits for working age people, set at £119 billion in 2015/2016.

What it means is that money spent on, say, improving the work capability assessment - which would help disabled people - means money not spent on some other group, children, say, who are equally deserving. Whether one political party would be able to make the £119 billion work harder and smarter than others is one on which the jury is out.

I'll end with a comment pertinent to the Cabinet reshuffle news that the role of Minister for Disabled People has gone to Mark Harper.  The disability campaigner and blogger, Sue Marsh, said that the government always places ministers for disabled people in the DWP. Why? Because the government thinks that disability is a work issue and a benefits issue rather than anything else.

This agenda is shared by all three main parties and shows how politicians as a group view disabled people. Instead, she argued, why isn't disability seen as a citizenship issue? There could be a disabled people's minister in a central department like the Cabinet Office, so disability can be addressed in the Department of Transport or Education or anywhere else where disability is an issue.

Robbie Spence is Disability Rights UK’s trainer and an adviser on benefits issues.
Robbie Spence is Disability Rights UK’s trainer and an adviser on benefits issues.
















Wednesday, 2 July 2014

WE NEED A NEW VISION FOR INDEPENDENT LIVING

The sun might be shining, well most days anyway, but prospects are not looking too bright in relation to disabled people being able to participate in society as equal citizens – the meaning of independent living. For many of us the skies are grey and the outlook is stormy what with the shambles that is characterising the introduction of the new Personal Independence Payment, the Work Capability Assessment obstacle course, Access to Work which is anything but even if you do manage to find employment, continued pressure on NHS resources, a social care system which according to the Local Government Association is facing ‘financial ruin’, and the closure of the Independent Living Fund.

So what to do?

We can protest.  We can call for cuts to be reversed, we can point out how dysfunctional some DWP programmes are becoming, we can call for increased resources for the NHS and social care and, yes, we can call for the ILF not to be closed. It makes far more sense to me to be putting resources into people living, and living well, rather than resourcing the replacement of Trident.  But these things on their own are not going to bring about independent living.

Take the NHS and social care which would undoubtedly benefit from more resources.  The question is what would they spend those resources on?  Experience tends to suggest that the biggest barrier to our emancipation and independent living are cultural attitudes – no no disabled people you cannot possibly control your own lives and have choice!  Won’t more resources on their own just serve to reassert that culture because there will be no financial incentive to question it?

Take the ILF.  Great, so it stays open but what happens then?  Whilst the ILF has benefited many disabled people, claims that it has been at the forefront of independent living are a little exaggerated.  It is of some interest that at the start of the transfer process to local authorities 60% of ILF recipients didn’t even have a personal budget let alone a direct payment.  It’s only now, in the run up to closure, that the ILF has relented and said that you can spend some of your funding on meeting support needs other than personal care.  It is because the ILF is closing that its budget has not been cut.  You can bet that if it stayed open cuts would follow.

2014 is a significant year being the 30th anniversary of disabled people employing their own personal assistants to live independently in the community.  People are rightly concerned that in today’s world of austerity we are in grave danger of losing all the gains we have made during those 30 years.  If we are going to stop that happening then I think we need to do more than just call for increased resources or for the ILF to stay open.  We need a new vision for independent living that tells people what independent living really is, that is relevant to all people of impairment and long term health conditions and their families, and is achievable.

What would this new vision look like? 

There is much to commend what Simon Stevens, long time disabled activist, has to say in his recently posted discussion paper.  He says what we need is a single integrated system that would assess people’s needs and allocate assistance and support based on the outcomes people could achieve in their communities and contribute to society. http://www.simonstevens.com/achievesupport
It makes sense to reduce the number of funding streams that disabled people have to access or, at the very least, get them working together so that disabled people have everything in the one budget as has proved to be so successful in the Right to Control trailblazer areas.


Another important feature of this vision must be peer support – disabled people advising and supporting other disabled people through the benefit of shared experience. For this to happen we need a strong network of our organisations.
A new vision must be underpinned by co-production - disabled people involved throughout as equal partners in initiating ideas, designing and delivering ways to meet our support needs and deciding how much progress has been made to realising independent living.


Above all I think a new vision needs to be inclusive of all disabled people, impairments and experiences.  It is the statutory agencies that pigeon hole us into different groups and encourage us to fight over the crumbs of an ever dwindling cake.  We don’t have to that.  We can unite around a vision applicable to all.


Disability Rights UK is holding a conference at the Oval in London on 18th July to map out a new vision for independent living.  Come and have your say or if you are unable to be physically present, join us on social media.  Contract Karen Earl for details: Karen.Earl@disabilityrightsuk.org  


Sue Bott, Director of Policy and Development at Disability Rights UK

Monday, 31 March 2014

Creating a step change in disabled people’s employment

Successive governments have talked the talk of employment opportunities for disabled people, written yards of strategy and policy, consulted again and again and set up programmes from Pathways to Work to Work Choice.

Yet for all this effort, in 2014 less than half of disabled people are in paid employment and the figures are far worse for people with multiple impairments, mental health conditions or learning disabilities and in some minority ethnic groups and some localities. Disabled people are 23% less likely to be in work than non-disabled people with the same qualifications (the co-called ‘disability employment penalty’). Those who are in work are over-represented in occupations that are shrinking (eg junior administrative, manual), under-represented in occupations set to expand (eg professional and managerial) and earn less than their non-disabled peers.


What is to be done?

Some countries facing similar challenges are considering radical action. In the US, regulations coming into force in March 2014 require about 40,000 companies contracted by the federal government to ask employees whether they have a disability: those that do not employ at least 7% disabled workers, or cannot prove they are taking steps to achieve that goal, could face penalties potentially including loss of contracts (click here to read The Wall Street Journal article).   Last year the Australian Disability Discrimination Commissioner Graeme Innes issued a challenge to major store Myers (a household name akin to Marks and Spencer), after they made a discriminatory comment on disability: he asked them to commit to achieving a 10% target of disabled employees by 2015 (click here to read more). 


In Britain we are rightly wary of quotas – they didn’t work after the 2nd world war (they were simply ignored), in countries like Germany that issued fines for non-compliance some companies just paid the fines rather than give more disabled people jobs, and anyway disabled people want jobs on merit.


But there are ways of incentivising employers to improve opportunities for disabled people, using both carrot and stick – without rigid quotas.      


We already have ‘employer ownership of skills’ which puts employers in the lead in skilling people up to meet the requirements of the future labour market, receiving some public money which they match. Why not extend that principle to employment and development of disabled employees specifically? If employers had ownership of the problem and the means to create solutions, we could see a step change. And, as in America, both government and businesses could use their supply chains to drive up the rate of employment of disabled people. During the Olympics and Paralympics, locog required their contractors to employ disabled people and they themselves successfully took action to ensure that large numbers of disabled people became volunteer ‘games makers’. The argument that ‘they didn’t apply’ does not hold up: we know that proactive approaches bring results. Central and local government and large companies could take a lead together in driving change through the economic power of procurement.


The centre of this strategy is transparency – letting us all know what the disability employment rate is in different organisations, at different levels and business areas. Companies could promote their practices on anything from mental health at work to adjustments for people on the autistic spectrum. This would help attract the best talent: disabled people want to know where is best to work, and young people generally increasingly ask at interview about corporate responsibility. 

There are routine objections to all this of course, notably that people will not want to say whether or not they are disabled for fear of being passed over for promotion or otherwise discriminated against. Rather than accept this, companies can be clear on why they are asking, vigorous in feeding back how the information is used to improve opportunities, and committed through all their leaders and managers to cultures in which the full range of human experience is valued. For the individual, shedding a big ‘secret’ in a safe environment improves well-being and productivity, so it’s a goal worth pursuing.


Culture and practices will change through serious levers and incentives  - not just worthy disability confidence communications campaigns.

And then we need to reform the support available to individuals. With Neil Crowther in 2013 I set out a vision to enable the individual to take control of their own employment support, working with the employer to create bespoke solutions (click here to read more). Our survey of over 500 disabled people found three quarters wanted to know what resources were available and to be able to decide how best to use them. People reported huge frustration at mandatory one size fits all approaches like CV writing courses when their particular challenge was a fluctuating condition for which they needed tailored support.


Let’s face it – the large programmes contracted by DWP under different Governments have not worked for disabled people.  The National Audit Office concluded that Pathways to Work had not been a good use of public money. And as the Centre for Social and Economic Inclusion put it in March 2014, there are no significant signs of increasing performance by the Work Programme; it could (they say) have been expected that with the increase in economic growth that performance would pick up, but it has not; and jobs for ESA claimants remain significantly below expectations – ‘the single largest problem for the Work Programme’.   

     
The way forward is personalised employment support so people can find the support that works for them; with providers offering evidence based approaches that support people to pursue their aspirations for decent careers through rapid job search, ‘earning and learning’ ie skills development in line with the local labour market, and flexible and where necessary ongoing support for both job seeker/employee and employer. A menu of support including a reformed and expanded Access to Work programme, and more intensive specialist support, would be a good start. 

At present, much employment support for disabled people – both nationally and locally commissioned – is not evidence based.

A step change is possible, which would see disabled people securing apprenticeships, traineeships, jobs and promotions. It requires radicalism. Tweaking what we have won’t do it – that has been tried and failed. Decision makers should be bold, create new incentives for employers and use public money on personalised, evidence based support for individuals.

We don’t want in 2024 to be looking back on another wasted opportunity. 


This blog, written by Liz Sayce, was originally posted on the National Development Team for Inclusion's (NDTi) website. Liz Sayce is Chief Executive of Disability Rights UK, the UK’s leading pan-disability organisation. She is a Commissioner at the UK Commission for Employment and Skills and has recently led an Independent Review into disability employment programmes. 

Tuesday, 4 February 2014

A guide to treating disabled people as being agencies of development in connected and inter-connected communities

Disability Rights UK vision is one of disabled people participating fully as citizens in our society. That participation can occur at many levels. Our vision drives us to campaign for all new and existing organisations (including the state itself) to actively seek disabled people’s participation and inclusion. However since we at DR UK also believe that disabled people can lead the change themselves I offer my thoughts on how disabled people can develop their own connected and inter-connected communities.


The bonds that underpin access in the broadest sense

Strong ties like the forces that bind hydrogen to oxygen atoms create the molecules in water but it is the weak ties between the hydrogen atoms that makes water a liquid and in turn sustain life. In a similar way it is the strength of weak ties that is often critical in successfully obtaining work. A tie is an information carrying connection between people and a weak tie is defined by having contact with someone more than once a year but less than twice a week. In a famous study from 1970 by Dr Granovetter these weak ties were responsible for 56% of the jobs obtained by 100 people he personally interviewed from the 282 he surveyed (1).

Value of peer to peer support

Peer to peer support occurs when people provide knowledge, experience, emotional, social or practical support to each other. It has been documented to have benefits for people with a wide range of health conditions including mental health, diabetes, trauma, limb loss and sight loss. In 2009 the Blind Veterans Association of the United States launched "Operation Peer Support." The focus is upon giving blinded veterans access to new tools and resources so that they can adapt and establish new life goals. Disability Rights UK are strategic partners with the “Shaping Our Lives” coalition and are pressing for the NHS to deliver peer to peer support as part of mainstream commissioning (2). This is a natural extension to NHS initiatives already committed to such as the expert patient programme pioneered by Dr Kate Lorig (3). The expert patient programme utilises the experience of “patient leaders” to effectively support those with newly acquired conditions to maintain their medical regime and adopt healthy lifestyles.

Exchange systems

Exchange systems embed the social nature of ties and peer to peer networks. They also build upon the idea that people have assets or qualities that are valuable to other people and that trading them can help people to connect in a social way with other people and in doing so enable them to gain access to other resources. These assets may be tangible such as trading the use of an item of equipment that a person possess but only uses occasionally or practical skills or qualities such as time. Sometimes these exchanges may be purely performed as gifts and exchange systems exist to facilitate the giving whereas sometimes these exchanges are conducted whereby the person giving earns a credit and the person receiving a debit and the exchange is conducted in what is called a complementary money system i.e. not in the official or normal currency of the country.

Types of exchange systems - the gift economy

There are many types of gifting that are well established and understood. These include Wikipedia that shares knowledge, filesharing such as Napster that shares media content, open source software that shares software development such as the Linux community and freecycle that sets up gifting circles and currently has nearly ten million members spread over 5000 groups worldwide. There are several ways to join the gift economy and quite possibly in your own area visit http://justfortheloveofit.org/ to share skills and assets you have or want. Skill sharing is also promoted through http://www.freeskilling​.org​.uk so that a person can acquire skills one week and then pass them onto someone else the next. At http://www.ilovefreegle.org/ you can become a giver yourself and give things away or "freegle" them. The "freegle" community has nearly one a half million members spread across 380 groups in the UK.

Exchange systems that value time

In timebanking people earn a credit by giving an hour or more of then their time to complete a useful activity for someone else and can use the credit to obtain an hour of someone else s time to fulfill a need of their own. The participants decide what can be traded and usually a catalogue or electronic directory makes the offers known. In "timebanking" everyone’s time is as valuable as everyone else’s so all participants trade on an equal basis. Timebanking rests on the principle of co-production whereby people are recognized as having resources that others value and need e.g. experience, caring, learning, socializing and that the exchange allows people within community to find many of the answers to their own problems. Visit http://www.timebanking.org/about/about-coproduction/ to learn more.

Exchange systems that use complementary currencies

Some exchange systems use a complementary currency i.e. not sterling, to enable people to barter without cash; examples include Local Exchange and Trading Scheme (LETS) such as the Brixton pound. Some local shops and businesses will accept these currencies and thus allow people to access resources beyond those that they have the means to pay in the national currency for. Businesses also benefit by gaining access to services for which they cannot get the credit to purchase. It is not simply the case that these currencies only exist in deprived neighbourhoods or bohemian communities; one of the most celebrated and evaluated is the WIR which has existed for more than sixty years in Switzerland.  Sixteen businesses started the WIR as a mutual credit system. A debt in WIR is either reimbursed by bartering in sales with someone else in the network or paid in full with the national currency. Over time the network has expanded to include a quarter of all the businesses in Switzerland. There are thought by LETS UK to be some 300 LTE schemes in the UK with some 30,000 participants. A best practice guide on how to set up and maintain LET scheme can be found at http://www.letslinkuk.net/practice/best-practice.htm

Building upon exchange systems to promote shared consumption

Shared consumption works on the idea that sharing the ownership rather than every individual owning the same item realizes economies for individuals and reduces the environmental impacts of mass consumption. People on low or fixed incomes stand to gain from ways of living that require less capital outlay for goods whether it is a family car or a lawnmower or allows for savings by utilizing the power of group purchasing. Disabled people could share specialist equipment and rent or donate the use of it so that others could benefit who cannot afford the initial outlay (4).

Value of exchange schemes to those moving from benefits into work

Disabled people could opt to form or join exchange schemes to: 1) make state benefits stretch further, 2) gain access through increased social networks to information on job opportunities and 3) become providers of skills, assets or time themselves and thus establish or reinforce new identities as agencies of development themselves.

Connected communities

Robert Putnam in his famous study of social capital (5) scientifically documented the dividend for society in terms of health, the economy, crime etc from stronger social relationships – social capital. He contrasted bonding social capital (connections within a community) and bridging social capital (connections across communities) and provided us with the evidence for why we need to create the infrastructure for it to happen. In the future connected communities of disabled people inter-connecting with the rest of society will exert a powerful influence on the shaping of both the private and public sectors. This is because just as Tesla’s experiments led to the national grid and allowed electricity to flow to further even more scientific developments so can the largely untapped creative energy of disabled people flow through these connections to those who will then be inspired to co-produce with them a new generation of fully accessible products and services. Our task is to co–create the infrastructure, the good news is that a lot of it already exists.

References

  1. "Getting A Job: A Study of Contacts and Careers."     Granovetter M, Cambridge, Mass: Harvard University. 1974
  2. http://healthsearchadvisor.blogspot.co.uk/2011/08/behavioral-health-innovators-dr-kate.html
  3. http://www.disabilityrightsuk.org/policy-campaigns/health-and-social-care-reforms
  4. http://www.slideshare.net/SunrunHomeSolar/the-peoples-guide-to-disownership
  5. "Bowling Alone" Putnam R,  Schuster and Simon, 2000


Thursday, 23 January 2014

Survivor personalities - uncovering resilience, finding happiness

Is it possible to be in some way a better person following the loss of your sight or the acquisition of a major disability? It’s a controversial question for sure. However the point of the question is to begin to explore why some people thrive and not just survive in response to even extreme life adversities. In the past people were simply expected to "pull themselves together" but resilience psychology (1) and the scientific exploration of happiness (4) is helping people to form their own action plans and move beyond helplessness or anger or blame to become resilient instead. Resilient people expect to eventually recover and have things turn out well. They often do.


Of course it starts with your health. There are simple things that improve health. Drinking more water rehydrates cells, slows aging and sustains energy. Walking ten thousand steps a day reduces the risk of heart disease by 50% and many cancers by almost as much. Taking deeper breaths doesn't just reoxygenate your body but just as importantly reduces stress and is the beginning of mindfulness (3). Exercising simple decisions over your body is also a prelude to influencing the environment beyond. 

Being blind requires good problem solving skills. Our eyes are responsible for the transmission of up to three quarters of the information our brains process. Blind people stand to gain possibly more from a study of the three kinds of problem solving: analytical, creative and practical, than others. Fortunately there are people and texts to help: Edward de Bono on creative thinking etc (5).

At present there is much talk of being disability confident but resilience psychology leads to us to develop a richer understanding of where confidence emanates from; namely self confidence, self-esteem and self concept. Self-confidence is the reputation you have with yourself and is nourished by becoming skilful and effective at what you do. Self-esteem is your emotional opinion of yourself and is nutured by acts of self-praise such as maintaining lists of your own good (and bad) qualities. Self-concept is concerned with identity and is strengthened by it being based upon a descriptive narrative such as the quality of service to others and not on nouns such as job title, income level or physical prowess.  

Curiously enough being curious is a highly resilient quality. At school first you learn and then you take a test but in life first you take a test and then you learn. Perhaps the fact that we have two ears but only one mouth is a way in which our bodies are telling us to listen twice as much as we talk. The act of learning to walk takes close to three years to perfect but if we didn't take a risk, suffer the fall and adjust our actions we would never learn to do it.

Just as humans physically learnt to stand on their own two feet so did the language and concepts they deploy move in the same direction. In Greek mythology Pandora opened the box and unleashed a horde of misfortune but she released hope too. A person can pass hope on to another. Many songs are based upon this possibility, from the Sinatra song "High hopes" to Eddy Grant's "Give me hope Joanna." In 1710 Leibniz coined the word optimus to describe God's perfect universe and optimism took root. Hope is what people have but optimism is what they believe. Optimism began to morph into empowerment with Emerson (6). In 1841 Emerson awakened people to their ability to take control of their environment in his famous essay on self-reliance. It proved to be an important step in moving the locus of human control from the external to the internal. Belief is central. Seligman, the US psychologist, studied why some animals and some people could not be taught helplessness and after seven years of experiments concluded that resilience could be taught and it could be be acquired (7). Perhaps even better the qualities of hope, optimism, positivity and coping can be combined to enhance resilience.

Resiliency is not about unfounded optimism any more than it is about unfounded pessimism. Resilient people develop a variety of possible responses in any given situation. In martial arts people learn a set of moves in response to a set of attacks but as you develop you learn to free form and it is at that point you master the art.

When researching the article on vocational rehabilitation published in last year's RNIB New Beacon I spoke to a manager of a blind employee in a small manufacturing plant in Scotland. No, apparently the employee was never at risk of being made redundant. I was told, his humour and ability to bring out the best in the workforce made him indispensible. Some highly resilient people have this "synergistic" quality. These people manage the flow of energy rather than time and interact with others to achieve the best outcomes for all. Synergistic skills can be developed through developing empathy with other, conflict resolution and developing a high threshold to ambiguity. The latter is important, "it’s a crazy situation but what can I do about the bit that’s in my control" is a good question to be asking oneself.  

Finding the silver lining in any cloud however dark it may be is a high level resilient quality. Is the blind person a good empathetic listener? Is the person with learning difficulties blessed with great resolve? Is the ex gang member ideally placed to warn gang members not yet with criminal records of the risks? Are single mothers the most efficient at time management? Perhaps these are all clichéd questions but they call us all to reflect on the need to be serendipitous. Serendipity is the ability to take a life disrupting event and turn it into a human strength. It is not about synchronicity or good luck, it is though about a response to genuine trauma.

Ultimately resilience is about moving to a new state of equilibrium following a shock such as an acquired disability. A person may go through stages of impact, chaos, adapting, equilibrium and finally transformation. The mental health consequences may be huge. However recent research into post traumatic stress disorder has led to the recognition of post traumatic growth too (8) and opened up the possibility of psychological first aid as a form of intervention in a similar way to medical first aid.

Many newly disabled people may feel disempowered by stories of superhuman activities like people without legs climbing mountains but perhaps a useful starting point is that we are already miracles - 66% water and 33% dust in the act of walking, talking thinking or simply being. A miracle can beget a miracle. Our bodies developed from the fertilised egg as a consequence not just of DNA but of morphogenic processes too (9). Cells were laid and differentiated by function in some way already knowing what cells had gone before and what their function had been. We were born with a predisposition to change and our minds at least remain plastic (neuroplasticity - (10)) in readiness to be able to respond to that need.

Of course people don't exist in isolation to others and resilience can be a product of supportive interaction too. A college student, totally blinded by an accident was appraised on the basis of his remarkably rapid and effective adjustment to his situation (11). The researchers identified the following factors as being important: 1) the person's extroverted optimism, 2) the support of a cohesive family, 3) a family united by shared values and beliefs, 4) the ability to find meaning and purpose in adversity, 5) the hospital staff's unequivocal acknowledgement of the irreversibility of the injury and 6) the involvement of the rehabilitation counsellor.  

The research illustrates the importance of belief (12) so the question arises what is known about the beliefs that heal and bring about well being and even happiness? I recently went to a screening of the "Happy Movie." The film (13) features an interview with the leading researcher in this area, Sonja Lyubomirsky. Lyubomirsky and her fellow researchers (14) have proposed that three main factors contribute to people's level of well-being; 1) their happiness set point or genetically determined variant - some 50% of variability, 2) their life circumstances such as income, marital status etc - some 10% of variability and 3) positive cognitive behaviour and goal based activities. In summary she found that increasing levels of happiness was possible but depended upon people having a will and a way.
         
Lyubormirsky is currently assessing the effectiveness of five types of intervention (15), suggested from previous studies as likely to enhance happiness:

1) from setting aside time to itemise one's blessings or   from writing a gratitude letter,

2) from engaging in self-regulatory and positive thinking      about oneself e.g. reflecting, writing and talking about ones  happiest or unhappiest events or one's goals for the future, 

3) from practicising altruism and kindness (campaigning perhaps?), 

4) from pursuing significant intrinsic life goals, 

5) from savouring positive life experiences.    

Lyubormirsky has reviewed all the available research (16) literature and been able to conclude that happiness is not just a good feeling but that there are numerous positive byproducts that benefit not just individuals but also their families, communities and the state. These benefits include higher income and superior work outcomes, larger social rewards, more friends, stronger social support and richer social interactions, more activity, energy and flow (17) and better physical health, lower stress levels and less pain and even longer life.   

Disability Rights UK seeks to promote this positive storyline on disability; one that is energising to the individual and rewarding to their quality of life. The good news is that you become resilient by continuously learning the best way of being yourself.  

References

Resiliency
1) Siebert A "The Resiliency Advantage" (2008) Berrett Koehler Publishers Ltd, San Francisco
         
11) Hoehn-Saric, R., Frank, E., Hirst, L.W., and Seltser (1981) "Coping with Sudden Blindness" http://www.ncbi.nlm.nih.gov/pubmed/7288428
         
Social Independence has been shown to be statistically related to personality - see

12) Greenough, T.J., Keegan, D.L., and Ash, D.G., (1978)    "Psychological and Social Adjustment of Blind People and the 16PF test" http://www.ncbi.nlm.nih.gov/pubmed/641190

Mindfulness

Happiness
4) Sonja Lyubomirsky http://www.faculty.ucr.edu/~sonja/

14) Lyubomirsky, S., Dickerhoof, R., Boehm, J.K., Sheldon K.M.    (2011) "Becoming happier takes both a will and a way: An experimental longitudinal intervention to boost well-being" Emotion, 11, pp 391-402

15) Boehm, J.K., Lyubomirsky, S., & Sheldon, K.M. (2011) "A longitudinal experimental study comparing the         effectiveness of happiness enhancing strategies in Anglo-     Americans and Asian Americans" Cognition and Emotion,      25, pp 1263-1272

16) Sheldon, K.M. and Lyubormirsky, S., (2012) "The challenge    of staying happier: Testing the hedonic adaptation prevention    model" Personality and Social Psychology Bulletin, 38, pp   670-680

Problem solving
5) Buzan A - http://www.thinkbuzan.com/uk/  deBono E - "Lateral thinking:creativity step by step" (1970)      Harper and Row

Self Reliance
6) Ralph Emmerson, "Self Reliance" (1841)           http://www.emersoncentral.com/selfreliance.htm

Optimism
7) Seligman, M.E., (2006) "Learned optimism: how to change your mind and your life"

Post traumatic growth
8) http://www.positivepsychology.org.uk/pp-theory/post-      traumatic-growth/105-post-traumatic-growth.html

The Happy Movie
13) "The Happy Movie" directed by Roko Belic (2012)           http://www.thehappymovie.com/

Flow
17) Mihaly Csikszentmihalyi, "Flow: The psychology of optimal experience" 2002

Philip J Connolly







         

Wednesday, 8 January 2014

Let's come together for "Liberation technology"

Philip Connolly, DR UK Policy and Communications Manager considers the future of assistive technology for those who are blind and partially sighted.


Our 21st century is now in its teens, a period normally characterised by adventure, risk, personal development and yes growing pains too. In technology its inheritance was the e-generation of e-commerce most memorably marked by ebay. Its childhood was the o-generation of open systems most memorably signalled by open source software. The letter of our teens could well be L for liberation. That is liberation from poverty and the isolation that comes from being outside of the margins of society that have been set by other people. In the liberation generation we will move from products for mainstream markets that are adapted for the blind, on to technologies customised for the blind to technology initiated by the blind. And of course it has to be affordable; can we knock at least one zero off the price? It is first worth tracing this journey through some of the products and the possibilities they now offer for communication, mobility, navigation, shopping and work.

Indian engineers working under licence from the University of Pennsylvania have modified Microsoft's Kinect, a motion sensing input device for the Xbox 360 video game console and mounted it on a belt so that blind people can navigate in the street. The belt's (called a viSparsh, an Hindi word meaning touch) sensor is able to detect obstacles in front of the walker and transmit this information via vibrations to the person, the vibrations increase in intensity as the person gets nearer to the object. The noteworthy message is that the technology for liberation is almost always here but simply needs reapplying.

Of course many blind people really want to do more than simply walk. My uncle Tom, a well known blind resident of Morecambe until his recent death from old age used to like sitting in a car and revving up the engine. Could it be that the generation of blind people who come after Tom might even be able to drive? Google's robotic self-drive Toyota Prius has chauffeured a blind man to a taco Bell and dry cleaners. The self-drive car has sensors that detect the presence, speed and direction of other cars and brake accordingly and drives following a computer map of the route. The great news is that the highway authorities haven't baulked at the development. In early 2012 the State of Nevada became the first state authority to create regulations for companies testing self-drive cars on public roads.

Of course customising technology for the blind is being made easier through applications - apps for mobile phone technology. Mario Romero a post doctoral researcher at Georgia Institute of Technology has co-developed an app called "Braille Touch that could help blind people to send text messages and type emails on touch-screen smart phones without the need for expensive and extra equipment. To use the app people hold their phones with the screen facing away from them and punch combinations of touch screen buttons to form characters. The screen speaks a letter after it's been registered so that there is no need to see the screen. The real breakthrough may be that sighted people may come to use a touch screen Braille keyboard in preference to an ordinary key board because Braille is faster. Sighted people could be liberated to use their eyes for other things whilst blind people are liberated from paying for expensive bolt-ons.  

The increasing interface with machines to obtain services has opened up a digital divide whereby people with sight loss increasingly risk being left behind. However smart card technology can also close the gap too. The SNAPI - special needs application programme interface - project has been developing a smart card that can carry people's access requirements so that when the smartcard is inserted into a self service terminus the terminus changes to meet their access requirements, for example a screen changes to the person's preferred font size or colour contrast. There are potentially vast numbers of possible uses for the smartcard from extending the time it takes to get yourself and your guide dog through a ticket barrier at a train station to obtaining the access features on a PC if your company operates a hot desking policy.
         
True liberation however comes with the power to initiate. People with sight loss are as creative as anyone else and all inventions start as ideas in the mind. Now the web is making it easier for people with an idea to form collaborations with other people with technical skills or even the patrons to pay for it to happen. Kickstarter is the world's largest funding platform for creative projects and has successfully hooked enough patrons to fund close to half of the 40,000 projects that people have uploaded as video clips. Projects are submitted at no cost and Kickstart takes a 5% fee if projects successfully attain their funding target with in addition Amazon taking a 3% to 5% credit card processing fee.

At www.elance.com it is possible to register yourself as a contractor and get hired, find a collaborative partner or simply search for a job. It is also possible to post the brief for work you need doing and find people who will offer the enterprising solutions you are looking for. You can then pay online for the solution you want.

Of course keyboards present problems but the keyboard itself is set to disappear. Voice recognition systems such as Apples's Siri or Samsung's Galaxy3 111 app for mobile phones allows people to speak to their computer or mobile and have it converted to text so that the user can send emails or text messages or obtain a spoken answer. The future is oriented towards hands free technology and it will not all be about the screen but sound too.

This in itself prompts the question - how can we predict future technology and know whether it will be of value to blind and partially sighted people. Technology is traversing a path that John Robb helpfully describes using an engineering template as STEMI - Space (less volume), Time (faster), Energy (more energy efficient), Mass (less waste) and Information (higher efficiency and less management overhead). None of these characteristics inherently present a barrier to people with sight problems. However digital exclusion is very real therefore it is necessary to interact with designers to ensure accessibility at the outset. Could blind and partially sighted people offer themselves as members of user or testing groups and could course awarding bodies stipulate assessment for understanding of accessibility in software design courses?

Liberation technology has to be not just accessible but affordable too. Here too trends in innovation are significantly reducing manufacturing costs. At one time the cost of making something for a small market such as visually impaired population was prohibitive but now 3 D printers can be programmed to print out an object without having to set up a whole new production line or commission the object to be made by hand. As Kevin Carsen describes in his "Home Brew" Technology manifesto even the cost of setting up factories is now a fraction of what it once was. This raises the possibility once more of local production for local need. The Reprap 3D printer is one such commercially available printer and can print out even transparent objects such as a pair of glasses.

The internet is increasingly being used to source crowds. Crowds: for finding shared interests so people can begin the search for love. Crowds: for consumers wishing to exercise the collective strength of a group's purchasing power. Crowds: for activists working to organise protests like the Arab spring. In the near future disabled people will also come to experience the liberating power of crowds. It is a key task of the Disability Resilience Network.

The bigger problem may be the speed of technological change.  The Intel co-founder Gordon E Moore coined Moore's law as far back as 1965 to describe a doubling of the capabilities of digital electronic devices every two years. He predicted that the trend would continue for ten years whereas it has continued ever since but is now thought to be slowing slightly to a doubling every three years. Nonetheless at this rate what we will all need to reboot most will be our personalities.

Rebooting our personalities will be the ultimate form of liberation. It will call for a relearning of our previous storylines so that we can ourselves become liberated. It isn't simply the inventors of assistive technology that are set to liberate lives. The people who help us to do reboot our personalities in readiness to capitalise on it are the real liberators. New thinking such as Byron Katie's "The Work" or Al Siebert's "Resiliency Advantage" will be vital to doing this. Reggae star Bob Marley sang "You've got to fulfil the book." Of course Bob Marley wasn't talking about "Facebook" but If you are a "Facebook" user it shouldn't seem like a radical idea for a community to write a book. Disabled people need their own book  to identify and name the transformative thinking in their lives so that in turn they make use and even influence the force that is liberation technology.

The Disability Resilience Network has drawn in people keen to harness liberation technology to support people's ability to find adjustments or coping strategies in response to shocks in the external environment. There already exists an invisible revolution of people labouring even in their own kitchens to invent that technology. It is likely that first amongst the products that the Network will pioneer will be new peer to peer support networks and a self-help manual to make that revolution visible.

Web links to investigate liberation thinking and technology further

 1) navigation technology - firstly in the street but also could
blind people drive
http://content.usatoday.com/communities/ondeadline/post/2012/03/googles-self-driving-car-takes-blind-man-to-taco-bell/1?csp=34news#.T4tKlrOJd_c

2) Indian engineers modify Microsoft's Kinect to help the blind walk with confidence
http://ibnlive.in.com/news/indian-engineers-modify-microsofts-kinect-to- help-the-blind-walk-with-confidence/227623-11.html

3) -Open source Assistive Technology toolkit

4) Braille keyboard made cheap on iphone

5) SNAPI - a protocol for data held on a smart card, or a mobile phone or whatever, which has your "profile" (your abilities, preferences etc).

6) STEMI compression

7) Byron Katie and "The Work"

8) Al Siebert and resilience

9) Blind people and liberation technology - a blind person's perspective

10) Clifton and strenghtfinder

11) Kevin A Carsen, "The Homebrew-industrial revolution: a low overhead manifesto" Booksurge Publishing 2010

            

Tuesday, 10 December 2013

Towards a fair contract with disabled people: why Government should start from scratch on the Work Capability Assessment and transform employment support

We expect Government imminently, in quick succession, to publish Dr Paul Litchfield’s independent review of the Work Capability Assessment (WCA) and the Government’s own Disability Employment Strategy. These two important reports must not be viewed in isolation from one another.


In Britain there are about 6 million people of working age who are disabled or living with one or more long-term health conditions. About half are in work, half out of work. The half who are out of work have expectations, just as the wider public does – for a fair approach: where the obligations that government imposes on disabled people to find paid employment are matched by reciprocal obligations for government and employers to do everything within their power to create a receptive labour market and to support people to compete for jobs on equal terms.  Fairness dictates that a disabled person should only be required to work if the adjustments – equipment, support, technology, flexibility and non-discriminatory attitudes – they need to work are in place; and if the expectations on them are reasonable.  Sadly, at present the system is entirely unfair, expecting disabled people to assume equal obligations without enjoying anything even nearing equal opportunities.

Disability Rights UK’s recent report ‘Taking Control of Employment Support’ lays out the problems with the Work Programme (or ‘non-work programme’ as it is becoming known to disabled people) and Work Choice, the specialist disability employment programme. The Work Programme to which new Employment and Support Allowance claimants are often assigned achieved a 5.3% employment rate in 2012-13 against a target of 16.5%; and even allowing for the set-up phase, the programme is heading for about an 88% failure rate with these disabled people.  Whilst Work Choice gets somewhat better employment outcomes than the Work Programme, perverse incentives draw it away from serving people with the most complex barriers – the very people it was set up for. For instance, in the whole of Scotland, Wales and England, Work Choice on average has supported 58 people with serious mental health problems each year into employment. In just one area of London, an NHS Trust using an evidence based personalised approach, helped more than 3 times as many people with serious mental health problems secure jobs.
 

The vehicle via which disabled people are directed towards these ineffective programmes is the Work Capability Assessment.  Ironically, the very last thing the WCA is capable of is assessing whether or not someone is capable of work. Companies like BT and Barclays have long abandoned using pre-employment health questionnaires to test someone’s capabilities to work prior to starting – not least because they are not worth the money spent on them. They tell you nothing useful about the person’s potential performance in work.  Research evidence is clear: the best predictors of someone’s employment success are self efficacy (a sense of choice and control), support and adjustments that are right for you – that are individualised – and motivation.


Whether you can or cannot ‘raise either arm to the top of the head as if to put on a hat’ (one of the WCA descriptors), or mount or descend two steps unaided by another person, or cope with change, has no known correlation to your employment prospects. This depends not only on the job (you might be sitting all the time, with no need to get up and down steps) but most particularly on whether the employer will make adjustments, whether you have the support you need (for instance, to ‘cope with change’) and how motivated you are: how much you feel you could do it. External factors – whether an employer is prepared to give you a chance, whether you can as a deaf person get the communications support you need to do the job –are far more significant than whether you are or are not deaf or living with a long-term health condition.

In reality, the sole function of the WCA is to determine which benefit a person receives:  Job Seekers Allowance (JSA) with high demands of work-seeking; Employment and Support Allowance Work Related Activity Group (ESA WRAG) with some requirements; or ESA Support Group, with no requirements (and ironically usually no support  either).  At present for many people the WCA leads to only one of two outcomes: conditionality, sanctions and loss of income without corresponding support and opportunities, or being required to lead a life standing still.   It is a system that neither manages to identify the real barriers to work experienced by disabled people nor to ensure social security for those who are too unwell at the time to be seeking work.



It is therefore no surprise that the whole process of the WCA – to which roughly 11000 people per week are subject - tends to be experienced as discouraging, depowering and stressful – thus whittling away the sense of self efficacy and motivation that research tells us supports positive employment outcomes. 



We expect that Paul Litchfield will make proposals to improve the WCA procedures, as Professor Harrington did before him. Harrington called for more humane processes and better attention to how people with mental health issues, autistic spectrum and learning disabilities should be assessed. The fact that despite Harrington’s recommendations the Court of Appeal has just ruled that the WCA disadvantages people with those very impairments is just one indicator of how recommending something does not necessarily mean it is implemented. The Disability Benefits Consortium submitted evidence to Litchfield showing that most people going through the WCA had seen no improvement since Harrington reported (indeed many thought the process had got worse). They found the process inaccurate, stressful, insensitive to the reality of their impairments and sometimes offensive. It is to be hoped that Dr Litchfield will make robust recommendations that will stick.


In 2011-12 Government spent £112 million on Work Capability Assessments plus £43 million on appeals against it – or about £3 million a week. Government has in effect set up a huge and expensive enterprise of testing –– in the absence of any evidence of linkage between what is tested (your functional capacity) and your ability to work. If pre-employment health questionnaires are a waste of money to employers, the WCA should be recognised for what it is - a scandalous waste of tax payers money – and at a time when an unprecedented public spending squeeze means every penny available should be invested in supporting disabled people, not on pointless bureaucracy and red-tape.


It could be so different.   Imagine if we designed a system based on:

  • Supporting self efficacy and encouraging people to build their capabilities. Assessments might be focused on what you need to achieve that – your aspirations, your employment support needs and adjustments, linking this to your other support needs (social care, health etc – as in the Right to Control pilots). This could result in a personal budget for your employment related support, with which you might select a mentor, access to peer support, a job coach or whatever support would most help you, as an individual
  • Incentivising and requiring employers to change the world of work: for instance, for some roles annualised hours contracts could be effective, so you work when well; and Government could fund temporary cover for someone who has to take disability-related time out, thereby reducing the disincentive to employ you in the first place (an idea that has been much recommended, but never implemented). Disabled people and employers could co-design solutions, drawing on the expertise of provider organisations as they choose to    

This is what the Disability Employment Strategy needs to deliver.  It must promote and test genuinely personalised support, expand peer support and give far more power and responsibility to employers to make systemic changes.

If that approach was adopted, and enabled more people to work – would it really be so expensive? Over 3 million disabled people are already in employment, contributing around £9 billion a year in taxes. They could contribute far more.


Yet tax payers’ money is presently being wasted  in ways that reduce self efficacy and opportunity.

Iain Duncan Smith was recently rumoured to be considering getting rid of the ‘work related activity group’. Sir Bert Massie is leading a group for the Labour Party to formulate new social security policy propositions. The Joseph Rowntree Foundation is developing a major new strategy to tackle poverty, with a strong emphasis on disabled people’s opportunities for paid employment. Whilst the outcomes of these deliberations are unknown and may or may not be helpful to disabled people, there is no doubt that in the lead-up to the 2015 election the time has come for political parties to radically re-think.

The current system is expensive and ineffective. Tinkering with it will not be enough. Not enough for the public – who want to see more people actually working (not just going through make-do work capability assessments). Not good enough for disabled people, many of whom want to use and develop their skills and talents and get paid for it. And not good enough for the UK, which needs everyone’s talents and a far more cost effective way forward than is currently on offer if we wish to see a genuinely inclusive and sustainable recovery.

Liz Sayce Chief Executive of Disability Rights UK

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