One in 10 do not have a close friend and even more feel unloved, survey finds

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contentment, employment, family, friends, health, loneliness, love, money, relationships, well-being

One in 10 do not have a close friend and even more feel unloved, survey finds

Millions of people in the UK do not have a single friend and one in five feel unloved, according to a survey published on Tuesday by the relationship charity Relate.

One in 10 people questioned said they did not have a close friend, amounting to an estimated 4.7 million people in the UK may be leading a very lonely existence.

Ruth Sutherland, the chief executive of Relate, said the survey revealed a divided nation with many people left without the vital support of friends or partners.

While the survey found 85% of individuals questioned felt they had a good relationship with their partners, 19% had never or rarely felt loved in the two weeks before the survey.

“Whilst there is much to celebrate, the results around how close we feel to others are very concerning. There is a significant minority of people who claim to have no close friends, or who never or rarely feel loved – something which is unimaginable to many of us,” said Sutherland.

“Relationships are the asset which can get us through good times and bad, and it is worrying to think that there are people who feel they have no one they can turn to during life’s challenges. We know that strong relationships are vital for both individuals and society as a whole, so investing in them is crucial.”

The study looked at 5,778 people aged 16 and over across England, Wales, Northern Ireland and Scotland and asked about people’s contentment with all aspects of their relationships, including their partners, friends, workmates and bosses. It found that people who said that they had good relationships had higher levels of wellbeing, while poor relationships were detrimental to health, wellbeing and self-confidence.

The study found that 81% of people who were married or cohabiting felt good about themselves, compared with 69% who were single.

The quality of relationship counts for a lot, according to the survey: 83% of those who described their relationship as good or very good reported feeling good about themselves while only 62% of those who described their relationship as average, bad or very bad reported the same level of personal wellbeing.

The survey, The Way We Are Now 2014, showed that while four out of five people said they had a good relationship with their partner, far fewer were happy with their sex lives. One in four people admitted to being dissatisfied with their sex life, and one in four also admitted to having an affair.

There was also evidence of the changing nature of family life – and increasing divorce rates – in the survey, which found that almost one in four of the people questioned had experienced the breakdown of their parents’ relationship.

When it comes to the biggest strains put on relationships, a significant majority (62%) cited money troubles as the most stressful factor.

The survey also found that older people are more worried about money, with 69% of those aged 65 and over saying money worries were a major strain, compared with only 37% of 16 to 24-year-olds.

When it comes to employment, many of those questioned had a positive relationship with their bosses, but felt putting work before family was highly valued in the workplace.

Just under 60% of people said they had a good relationship with their boss, but more than one in three thought their bosses believed the most productive employees put work before family. It also appears that work can be quite a lonely place too: 42% of people said they had no friends at work.

Nine out of 10 people, however, said they had a least one close friend, with 81% of women describing their friendships as good or very good compared with 73% of men.

‘Autism doesn’t hold me back. I’m moving up the career ladder’

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employment

‘Autism doesn’t hold me back. I’m moving up the career ladder’

Jonathan Young has big plans for his career. The business analyst at Goldman Sachs is on the autistic spectrum. But this, he says, is not something he allows to hold him back.

“I’m the company’s global go-to guy for all the information used in every single one of our internal and external presentations,” he says. “I’m moving up the ladder every year in terms of responsibility or promotion. My ambition is to maintain this momentum. In 10 years, I want to be someone fairly big.”

He is part of the most visible generation of young people with autism our society has ever known. Diagnosed early, this generation have been educated to expect not just a job when they leave school but a career on a par with their “neuro-typical” contemporaries.

The confidence and determination of these graduates – some of whom are educated to PhD level – are forcing the pace of change in organisations previously inaccessible to those with autism. Businesses, from City law firms and banks to global healthcare companies, have begun to open their doors to young people once thought able only to do lowly jobs.

Young first went to Goldman Sachs as an intern in the National Autistic Society’s specialist employment programme, Prospects. His time at the investment bank was such a success that the two-month internship swiftly became a full-time, permanent post.

“When I arrived, this role was a part-time job but I built it up into a key, full-time post and made it my own,” he said. “Autism doesn’t hold me back because I have had the correct support from a young age. It’s key to have that support, both in education and in the workplace, but I don’t require anything complicated: people just have to understand that I’m different.”

For all his confidence, Young admits that he considers himself fortunate. “I never lose sight of the fact that I’m lucky to have a job that allows me to use all my intelligence and stretch my potential,” he said.

Prospects has placed young people with autism in companies including Thomson Reuters, the law firms Clifford Chance and Ashurst, the technology and business consultant Cartesian, and John Lewis.

Penny Andrews got her job as a library graduate trainee at Leeds Metropolitan University in August without any help from a charity or specialist employment agency.

Having beaten 200 applicants to the job, she believes she has proved herself to be the best candidate. “Sometimes I feel people think I should be grateful that I have a job but I’m performing a useful task and doing it well, so they should be grateful to me,” she said. “After all, they wanted me badly enough to employ me a month before I had finished my degree in IT and communications with the Open University.”

Far from feeling that her diagnosis of Asperger’s is something to be “got over”, Andrews maintains it gave her a lead over the other candidates. “I was completely open about my autism throughout the interview process and even asked for a few special conditions to take account of my Asperger’s, such as working from 8.30am to 4.30pm,for example, so I don’t have to take the rush-hour bus home, taking extra breaks in a special quiet area if I need quiet, and not having to answer telephones.”

They are small adjustments for her employers to make, she said, compared with the advantages her Asperger’s gives them. “I’m more focused, intense and honest than a neuro-typical person,” she said. “I do things thoroughly and pay proper attention to detail. I’m always switched on: even when I’m not at work, I’ll go to events that are relevant. Libraries are one of my autistic specialities and I harness that at work.”

Employers’ attitudes might be changing but there is a lot of ground to make up. Just 15% of those with autism have full-time jobs, according to research by the National Autistic Society (Nas), while 9% work part-time. These figures compare unfavourably with the 31% of disabled people in full-time work in the UK. More than a quarter of graduates with autism are unemployed, the highest rate of any disability group. Nevertheless, employers are increasingly coming round to the arguments from disability advocates that employing those on the spectrum is not about charity or social responsibility – but the empirical benefit of taking on people with unique skills.

Tom Madders is head of campaigns at the society and responsible for its Undiscovered Workforce campaign to get young people with autism into employment. He talks of a “vast pool of untapped talent” among those with autism.

“When someone has the intellectual ability and ends up doing a job like working in a supermarket, it’s heartbreaking. It’s such a waste because although everyone with autism is different, the things they bring that are additional to the rest of us include a very high concentration level, very good attention to detail and analytical skills that are key in data analysis and when looking for anomalies in complex spreadsheets,” he said. “Why would employers want to miss out on those skills? In addition, those with autism have very specialist areas of exhaustive interest which, if these can coincide with the job in hand, can be extremely useful. They’re much more reliable in terms of timeliness and absenteeism and very loyal. Often, they’re very happy in jobs other people find boring.”

William Thanh has such severe autism that he can only communicate through his iPad. But his work at the Paul bakery in London is of such high quality that the manager, Salina Gani, is keen to increase his hours.

“When we decided to take on three young people with autism last year, we thought there would be limits to what they could achieve,” said Gani. “But these young men have shown us that we shouldn’t assume anything on the basis of their autism alone. Yes, they need work that’s repetitive and structured, but much of the service industry is like that anyway. We would gladly take them on full-time and increase the numbers of people with autism working for us across all our outlets.”

At Guy’s and St Thomas’ hospitals in London, an initiative was set up two years ago to help people aged 18 to 30 with autism gain work experience. Of the 20 or so interns who completed the scheme, four have jobs at the hospital. The third cohort of about 16 young people to begin this year will be twice as large as that in the first year.

Staynton Brown, associate director of equality and diversity at the hospital, dismisses any suggestion of the initiative being a philanthropic one. “This is not a charitable gesture,” he said. “We want to make sure we have the most talented workforce possible. It’s in our interests in multiple ways. For a start, this hospital serves a very diverse population and we want to do that to the best of our ability, which is more likely to happen if our workforce is used to working alongside a diverse group of colleagues.

“We’ve all benefited from the changes we’ve incorporated to accommodate those with autism. By clarifying the way we give information to and help introduce the interns into the hospital, we’ve made communication clearer for everyone, which leads to better patient care.”

William Elliott, a managing director at Goldman Sachs, agreed. “Employers are thinking more diversely about their workforce because they want to get the best talent through the door. We’re increasingly recognising those talents can be found within this historically underrepresented group.

It’s a lot easier than most people think to integrate someone with autism into the workplace. It just takes a good manager who is prepared to give some time to bring that person on, an approach which will be of benefit to every new employee.”

Project Search, a programme supported by the Office for Disability Issues, helps those with autism find – and keep – permanent employment in companies including GlaxoSmithKline and the security firm G4S. About 30% of Project Search graduates have been taken on by their host employers. An additional 30% are signed up by other employers.

“People are being recruited on Project Search before they have even finished the programme because, far from being seen as a charity scheme, these young people are rightly regarded as a talent pool, like student nurses,” said Anne O’Bryan, who runs the European arm of the programme.

Some of the improvements can be traced to government policies. The Autism Act 2009 – a response to poor employment rates for people with autism – was the first disability-specific legislation to be passed by the government.

In 2011, the Department for Work and Pensions and Nas published a guide for employers, Untapped Talent. But David Perkins, manager of Prospects at Nas, said the government had done as much harm as it had good. “Unfortunately, things really haven’t improved in terms of employing people with autism and Asperger’s syndrome over the last few years,” he said.

Prospects has helped place 30% of its clients in work – 18 people in 2012 and 15 in 2011. But these figures, said Perkins, are down on the three years before. He blames the government’s Work Programme.

“It has been detrimental in helping people with autism to find employment because it really doesn’t reflect the specific needs and difficulties people with the condition might have in terms of employment,” he said, pointing out that some Work Programme providers were getting just 3.5% of clients into jobs.

“Funding for courses such as our own – which is 10 times more successful – is extremely limited, and those with autism who want to work continue to struggle to get adequate support to allow them to do so,” he said. “As things stand, there is so little help out there for the around one in 100 adults with the condition, that finding sustainable employment for people with autism is an uphill battle.”

But Peta Troke of Autism Plus is more optimistic. “The job market is opening up to people with autism in a way it never has before,” she said. “There’s a ‘can-do’ attitude around people with autism now. There’s a spark.”

Unrealised potential

• Only 15% of adults with autism in the UK are in full-time paid employment and only 9% are in part-time employment.

• 26% of graduates with autism are unemployed, by far the highest rate of any disability group.

• Of those who do not currently have a job, 59% do not believe or think they will ever be able to get one.

• According to the National Autistic Society, most of the 300,000-plus working-age adults with autism want to work but are held back by a lack of understanding of autism and a dearth of specialist employment services.

• With help from the National Autistic Society’s employment support service Prospects, 70% of adults with autism were able to find a job.

• Only 10% of adults with autism receive support in finding work but 53% would like it.

• 79% of adults with autism who receive out of work benefits say they would rather work.

• 37% of adults with autism have never had a paid job after the age of 16 and 41% of people over the age of 55 have spent a period of more than 10 years without a paid job.

• 51% of adults with autism in the UK have lived through a period in which they have had neither a job nor access to benefits. Of those, 10% have been in this position for a decade or more.

• Of those who have worked, about a third said that they had experienced bullying and felt that they had received unfair treatment or discrimination as a result of their disability.

• Job applications and interview processes can be particularly challenging for people with autism, as the condition can affect the ability to communicate. Often “good communication skills” are described as a prerequisite in a job specification, even when the role does not directly require them – which can discourage people with autism from applying.

Job applicants with schizophrenia facing ‘discrimination’

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carers, discrimination, employment, recovery, remission, schizophrenia, stigma, workplace

Job applicants with schizophrenia facing ‘discrimination’

Tens of thousands of people with schizophrenia are being denied the chance to work because of “severe discrimination”, a report has found.

Only eight per cent of people with schizophrenia are in paid employment, compared with 71 per cent of the general population, although many more would like a job, a report by the Work Foundation says.

Seven out of 10 people with schizophrenia feel that they experience discrimination because of their condition. The report blames a lack of understanding, stigma, fear and discrimination towards people with schizophrenia and calls for urgent government action to prioritise work as part of the recovery for those with mental illnesses.

People with schizophrenia in paid employment are over five times more likely to achieve remission from their condition than those who are unemployed or in unpaid employment, according to the report, Working with Schizophrenia.

Charles Walker, chairman of the all-party mental health group in the Commons, said: “For many people with the condition, having a job can mean a great deal, both economically and socially.

“We must ensure funding continues so that more people living with schizophrenia can access the workplace and carers can also return to work.”

Nearly Half Of Unemployed Young People ‘Depressed’, Says Prince’s Youth Trust

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Depression, employment, mental health issues, support, young people

Nearly Half Of Unemployed Young People ‘Depressed’, Says Prince’s Youth Trust

Nearly half of unemployed young people are “always” or “often” depressed, while more than a quarter are depressed regardless of employment, the Prince of Wales’ charity has revealed.

The Prince’s Youth Trust research on the happiness of young people found 27% in work reported feeling down or depressed “always” or “often” increasing to 48% amongst those who are not in employment, education or training (Neets).

The survey findings, based on interviews with 2,136 16-to-25-year-olds in the UK, showed that one in 10 feels unable to cope with day-to-day life with those classified as Neets twice as likely to feel this way as their peers.

The trust’s fifth annual Youth Index gauged young people’s happiness across a range of areas from family life to physical and mental health.

More than one in five, or 22%, said they did not have someone to talk to about their problems while they were growing up, with Neets significantly less likely to have had someone to confide in.

Martina Milburn, chief executive of The Prince’s Trust, said: “A frightening number of unemployed young people feel unable to cope – and it is particularly tough for those who don’t have a support network in place.

“We know at The Prince’s Trust that it is often those from the most vulnerable backgrounds who end up furthest from the job market.

“Life can become a demoralising downward spiral – from a challenging childhood into life as a jobless adult. But, with the right support, we can help get these lives on track.”

Richard Parish, chief executive of the Royal Society of Public Health, said the recession has eroded young people’s confidence and ambitions.

“The Youth Index clearly shows a worrying discrepancy between young people who are in work and those who are not,” he said.

“These unemployed young people need support to regain their self-worth and, ultimately, get them back in the workplace.

“With recent record-breaking youth unemployment – the work of charities like The Prince’s Trust with vulnerable young people is more critical than ever.”

The Prince’s Trust, founded by the Prince of Wales in 1976, helps young people into jobs through measures such as personal development programmes and mentoring. The charity launched extra help for young people with mental health needs on its team programme four years ago.

Men risk health by failing to seek NHS help, survey finds

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access, employment, men, treatment, well-being

Men risk health by failing to seek NHS help, survey finds

Many men are leaving their well-being to chance, sometimes with “shattering consequences”, according to research that suggests they are far less willing than women to access NHS services.

A study by the National Pharmacy Association (NPA) has found that men are much less likely than women to take advantage of primary care services, including community pharmacies. They are also unwilling to consult a pharmacist face-to-face or seek treatment when sick.

Men visit their GP four times a year compared to six times for women, according to the NPA. On average they visit a pharmacy four times a year compared with 18 for women. More men than women admit that their understanding of medicines is poor, and they are twice as likely to take a new prescription medicine without first reading the patient information leaflet or seeking professional advice.

The review also found that nearly nine in ten men do not like to trouble a doctor or pharmacist unless they have a serious problem. As a result, men are less likely to access disease screening or seek professional support for healthy-living initiatives such as stop smoking schemes. In the three months to June 2012, 10,000 more women than men in England set a date to quit smoking, the NPA found.

“Our review shows that men aren’t taking full advantage of the support to maintain good health which is available free of charge on their doorsteps,” said Mike Holden, chief executive of the NPA. “Men tend to be driven by what they see as their immediate healthcare needs, and focus rather less on long-term wellbeing.”

The review, compiled to coincide with the start of Ask Your Pharmacist Week, suggests men’s reluctance to consult health experts will have wide-ranging implications for the nation’s health in the future because a number of treatable conditions will go unaddressed. By 2015, 36% of men are likely to be obese compared with 28% of women. Alcohol disorders are also twice as common in men.

The NPA suggested employment patterns could have a bearing on men’s attitudes to health services. Men are twice as likely as women to have a full-time job and are more than three times more likely to work over 45 hours per week, making getting to a surgery or pharmacy more difficult.

Stigma of mental ill health is ‘worse than the illness’

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anxiety, barriers, Depression, discrimination, economy, employment, mental health issues, psychotherapy, recession, relationships, stigma, Therapy, treatment

Stigma of mental ill health is ‘worse than the illness’

It is the single biggest cause of disability in the Western world but many sufferers say the stigma attached to it is worse than the illness itself, according to researchers.

While celebrity sufferers who speak out about their depression are hailed as heroes, ordinary citizens are shunned, taunted and abused.

An international study of more than 1,000 sufferers in 35 countries has found that three quarters said they had been ostracised by other people leading them to avoid relationships, applying for jobs and contacting friends.

Discrimination is leading many to put off seeking treatment with a subsequent worsening of their condition.

Drugs and psychotherapy can help 60-80 per cent of people with depression but only half get treatment and only 10 per cent receive treatment that is effective – at the right dose, for long enough and with the right kind of therapy.

The international study published in The Lancet found that levels of discrimination were similar to those for schizophrenia revealed in a similar study three years ago.

Professor Graham Thornicroft, head of health service and population research at the Institute of Psychiatry said: “We have a major problem here. Non-disclosure is an extra barrier – it means people don’t seek treatment and don’t get help.”

While public confessions of depression by well known people including the tennis champion Serena Williams, the US actress Kirsten Dunst and chat-show host Stephen Fry were increasing, abuse of sufferers was also widespread.

The Norwegian Prime Minister, Kjell Bondevik, attracted worldwide approval when he relinquished power for three weeks to his deputy in 1998 while he recovered from an episode of depression. He was subsequently re-elected.

In contrast, Professor Thornicroft described the case of a woman who had dog faeces posted through her door because neighbours wanted her out and another in which police halted an interview with a man whose flat had been burgled when they learnt that he had been in psychiatric hospital.

“Our findings show discrimination is widespread and almost certainly acts as a barrier to an active social life and having a fair chance to get and keep a job,” he said.

The Government’s Time to Change campaign launched in 2008 aimed at reducing discrimination against people with mental illness had proved to have had a “modest but significant” impact, he added.

In a separate study, researchers have found that the 2008 economic crash led to a deterioration in the mental health of men – but not women.

Anxiety and depression increased markedly among men in the three years following the crash, but women escaped largely unscathed.

Rising unemployment and falling income are not to blame, the researchers say. Instead, job insecurity is thought to be the cause.

Mental ill health among men rose from 13.7 per cent in 2008 to 16.4 per cent in 2009 before falling back to 15.5 per cent in 2010, according to the study published in the journal BMJ Open.

Men derive much of their social status from their occupation and are still the main wage earners in most families. They are becoming more mentally unstable because of the fear of losing their jobs in the recession.

The authors from the Social and Public Health Sciences Unit in Glasgow, say that while women’s mental health appeared to change little in the period it may have deteriorated since due to job cuts in the public sector.

 

Life begins at 65: workers can now stay on if they want

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age, discrimination, employment, retirement

Life begins at 65: workers can now stay on if they want

For many people, retirement is something to look forward to. But for others, it is not. When Knud Moller, a former government statistician, was forced to leave the job he loved in 2007 simply because he had turned 65, it was a horrible blow.

Mr Moller had hoped to keep working at least until the next national census, which was four years away, in 2011. Unfortunately, he didn’t have a choice. The law required that he retire, and the Stoke native was forced out of his job.

“I felt very unhappy. You lose your professional dignity and you, in a sense, become nobody,” Mr Moller, now 70, said. “I felt very bitter. I have applied for many jobs since then but often don’t even get an acknowledgement of my application.”

From today, however, the forced retirement law is no more. The Default Retirement Age (DRA) – which allowed employers to force people to retire when they reached 65 – has been abolished and older workers will be able to choose when they stop working.

Charities and senior citizens’ groups have campaigned against the DRA since it was introduced as an anomaly of new age-equality regulations in October 2006, arguing it discriminated against workers because of their age.

The charity director general of Age UK, Michelle Mitchell, welcomed the end of the law as a “major milestone in the fight against age discrimination”.

“We hope that now it is illegal to force someone out of their job simply because they are 65 or over, it will make employers look beyond their staff’s date of birth, objectively assess their skills and contributions and trigger a more positive and realistic attitude to older people,” she said. She warned that people over 50 find it harder than any other group to get a job.

But there are 955,000 people over 65 currently in work, or nearly one in 10 of that age group. This figure has risen steadily in recent years. Aside from the financial incentive, many of those who have continued working do so because they enjoy the activity. Gary Wakefield, 68, from Battersea, London, has worked at B &Q since his former employers made him partially redundant at 62, arguing that he was too old to continue as a forklift driver.

“I have always been a busy person. I cannot see myself sitting in front of the TV. I have been married for 48 years but I think that if you see your wife 24/7 it doesn’t always work, so it’s nice that I can be away for four hours every day.”

Case study: ‘I like working. My life is much more fulfilling’

Jean Rumbold, 70, from Southampton, was forced to retire as a GP surgery receptionist aged 65 and also had to give up the Brownie pack she had run for the past 32 years. Today, she works as a medical records officer at a local hospital in the mornings and as a swimming teacher in the afternoons.

“I felt cheated because I was doing a job I absolutely loved and I could have carried on. But there was no way I was going to give up work. I just like working. I feel as though my life is more fulfilling because I work. I enjoy my leisure time when I’ve got it but I like to keep busy.

“I also like the extra money. I get a state pension and the money from my two jobs has enabled me to buy a new car, go to the theatre and know I do not have any money problems.

“My husband is disabled – he’s got severe osteoarthritis. I work to 12.30pm at the hospital then come home and see to him. I need that job to keep me sane. Watching TV all day would drive me round the twist. I just love teaching swimming – there is a real sense of achievement”.

Life with Chronic Fatigue Syndrome (M.E.) ‘I feel like I’m crawling through the dark with an elephant on my back’

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agoraphobia, anxiety, chronic fatigue syndrome, employment, isolation, M.E., medication, panic attacks, treatment

Life with Chronic Fatigue Syndrome (M.E.) ‘I feel like I’m crawling through the dark with an elephant on my back’

Myalgic Encephalomyelitis (M.E.) also known as Chronic Fatigue Syndrome is a chronic, fluctuating neurological illness. It is estimated that in the UK around 250,000 people are affected by it to varying degrees. According to a report last month from charity Action for M.E., more than one third of Primary Care Trusts don’t commission specialist services for M.E patients or cannot confirm they do. M.E. Sufferer Nicola Cousins talks about her experiences of living with the condition.

I have had M.E. for 15 years but it is at its worst now. I am a talented painter, sculptor and photographer but no longer have energy for my much-loved craft projects, let alone keeping my house the way I used to and cooking for my family.

My worst problems are headaches, cramps, all sorts of tummy problems and being so tired I feel like I’m crawling through a fog in the dark carrying an elephant on my back. My skin crawls with hot and cold pins and needles and I have breathing problems.

I also take medication to help with the panic and anxiety I feel is a result of the M.E. I have spent a crippling six years trying to get over panic attacks. Due to accompanying agoraphobia, I was trapped in the same walls for more than four years. My family watched as I walked around like a ghost, scared of my own shadow, not able to eat or drink anything without diazepam to help me cope.

I waited six months to see a neurologist last year. Dosed up to the eye-balls with drugs to help me get there, I was with him for just five minutes when he said, ‘You M.E. people should stop looking for a diagnosis and get on with your lives’. I cried all the way home. There is no treatment available in my area and I am fighting to be able to see someone 12 miles away. Yet I go to the same hospital for everything else and I have not asked for help with my M.E. in 15 years.

My M.E. has been traced back from when I was a child. I suffered with repeated throat infections and lived on antibiotics. As an adult, I moved jobs continually as I would work well for some weeks, then need a week or two off in order to recover from severe tiredness. I had to pay £120 to see a specialist who told me I had M.E. in 1997. My GP would not fund it and I was at my wits end as to what was wrong with me.

In the beginning I was able to remain at work. I guess I was in denial as on good days I would do as much as I could. On bad days I would have no option but to stay off work and rest. No employer wants to pay for a full-time worker to be part-time. In the end I had to give up full-time employment because I was falling over and getting headaches. It put a lot of stress on my marriage as my husband at the time could not see I was poorly, he thought I was just lazy and we started to argue.

My brother already had M.E. so it was not a new thing in our family and my mother has Multiple Sclerosis, so I was caring for her on and off at that time. I took on four or five cleaning jobs for big houses around my area to try and keep money coming in. I stuck at it for four or five months but it got to the point where I could not walk up stairs anymore. I was getting vertigo and sickness attacks and was unable to drive, within a few months I was in a wheelchair.

I have re-married now and have a wonderful husband who looks after me. I do as much as I can when I can although life is tough when the M.E. goes on a downward spiral. Sometimes I have to spend days in bed. I live with constant pain and sickness and feel like I have a fairground in my head! I can not travel very far as it causes me to get an upset stomach and I get sick with the motion of the car.

However, I am thankful for the days that all this can be held back with a lot of pills and I am able to spend a blissful few hours shopping with my husband like normal people. I only have a 10 mile radius before I get out of my comfort zone but it’s better than nothing. I still feel isolated, trapped, useless and misunderstood. I have to fight for everything and it’s been a long, hard struggle the last 15 years. I would like to see better understanding of M.E. and I would dearly love to truly understand the cause of it.

 

Moken nomads leave behind their ‘sea gypsy’ life for a modern existence

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alcohol, assimilation, Burma, citizenship, culture, customs, decompression sickness, dive, education, employment, fish-bombing, gambling, integration, Language, livelihood, Moken, nomads, sea cucumber, sea-gypsies, stateless, Thailand, traditions, tribe, tsunami

Moken nomads leave behind their ‘sea gypsy’ life for a modern existence

Ngui takes one last breath and disappears with a tiny splash. Tunnelling through the turquoise waves, he dives past brightly coloured fish and coral, until he reaches the sandy bottom of the seabed, 20 metres deep, where he begins scouring for tonight’s dinner.

He wears no mask, no fins, and no diving tank. He prefers sarongs and button-down shirts decorated with seashell and starfish motifs but the most startling thing about him underwater is his eyes. They are wide open.

Ngui, 30, belongs to the Moken, a nomadic, seafaring tribe of hunter-gatherers who live in the southern seas of Burma and Thailand. Little is known about their origins, but it is believed they descended from migrant Austronesians who set sail from southern China around 4,000 years ago. Spending eight months of the year at sea, the Moken roam in small flotillas of kabang – boats fashioned from a single tree and shared by a nuclear family – and return to land only to barter fish and shells for essentials such as rice and petrol, or to wait out the monsoon season in temporary shacks. It is a way of life that has existed, unchanged, for centuries – but one that may not last for much longer.

The 2004 tsunami greatly depleted the source of the Moken’s only livelihood: the ocean’s once-abundant array of seafood. International fishing boats are now wiping out the little that’s left. Those Moken who have moved ashore are often forced to take dangerous jobs for menial pay. Those who stay at sea are sometimes arrested for lacking papers or permits. Others return to land after months afloat only to find their huts destroyed and luxury tourist resorts built in their place.

“The sea has changed and life has changed,” explains Ngui’s father, Jao. “Things we used to do we can’t do any more. Places we used to go we can’t go any more. Life isn’t fun any more.”

It would be difficult to find a family that represents the changes wrought on the Moken as well as Jao’s. He was born on a boat and spent his childhood at sea. He married at 16 and nearly pursued a traditional, aquatic lifestyle – until he and his wife decided to settle on land.

“Life was hard being illiterate,” says Jao in the cramped house in Kuraburi they now share with a 13-member extended family. “I wanted my children to go to school and have options.”

Education is still a relatively new concept to the roughly 2,000 Moken who live in the waters around Burma and Thailand, most of whom are stateless. A recent push by various charities and the Thai government to issue Thai identity cards has granted some access to state-run schools and healthcare, but claiming full-blown citizenship – by proving that they, or a parent, were born in Thailand – is a complex issue for a nomadic people who hardly use numbers and mark the date according to the tide, not the Gregorian calendar.

Even getting children to school can prove trying, said Sumana Sirimangkala, headteacher at the only school on Koh Lao, an island of 50 Moken families on the Thai-Burmese border. “Moken lack supplies like clothes, food, stationery, textbooks, shoes, raincoats, lifejackets, umbrellas – all the things that are necessary for children to come to school,” she says.

“Moken can’t afford any of these things, so the school has to provide it all – otherwise they don’t want to come.”

Moken children regularly drop out to help their parents earn money, students say. Some boys as young as eight are sent to work in construction, while others help their mothers dig for shells – backbreaking labour in the hot sun.

Nearly all the men on the island are hired by Thai fishing boats to plant explosives on the seabed, or to dive for expensive and exotic rarities such as sea cucumber. Sometimes they are sent down with air run through thin plastic tubes hooked up to a spluttery, diesel-run compressor; other times they dive without any air at all. Many succumb to decompression sickness (the bends) from ascending too quickly; some don’t return at all.

“I’m afraid of being killed, it’s so risky,” admits a 30-year-old Moken who has just returned from a fish-bombing expedition. “We wire together four to five dynamite sticks, connect another explosive wire that hooks up to the boat, and then I dive down to the bottom of the sea. When I come back up, the sticks are ignited with a battery.”

Sitdit, a Moken elder whose son died from decompression sickness during a job in the Nicobar Islands, says risks such as these are increasingly part and parcel of a new way of life.

“We are running out of resources, so our skills have to be adapted to the new challenges,” he says simply. “Sometimes the big boats get caught by the Burmese military and Moken are arrested. I had four relatives arrested by the Burmese military and they all died in jail.”

Apart from a handful of researchers who had studied their language and customs – notably the French father-son anthropologist duo Pierre and Jacques Ivanoff – the Moken were a relatively unknown lot until the tsunami, when headlines described the mysterious “sea gypsies [who] saw signs in the waves”. Charities and religious groups poured in with free supplies – food, petrol, boats and building materials – at such a velocity that some communities were left bewildered by the handouts.

“We had to become Christian to qualify for a boat, so I became a Christian – I even became a church leader!” explains Sitdit, his charity-built, two-room stilt house facing the “church”, an empty wooden structure with a simple roof. “All we had to do was follow the gospel and sing songs. But then the church [group] cheated us, and now nobody goes to church any more.”

Today, a different kind of communion is going on, one where Moken women in sarongs while away the afternoon heat with card games and whisky so strong it makes the eyes burn. When the men return from their jobs at sea, they too take to drinking and gambling.

“There’s an issue with their drinking a lot of alcohol – it’s everywhere,” says Jitlada Rattanapan of Plan Thailand, a charity working to support Moken children.

At Baan Tung Wah, a Moken village of around 70 families in the mainland resort town of Khao Lak, children with snotty noses and dirty T-shirts beg for sweets while elders take shots of strong drink. Most of the parents are away doing menial day jobs – working in construction, spraying insecticides, or scavenging for recyclables along the beaches and streets – leaving the children to play among puppies and chickens in the rubbish-filled streets.

“Everyone in this village drinks – they hit their kids, too,” says a shopkeeper, Kong Kwan, 35, who spends all day selling sweets and crisps to Moken children and petrol and whisky to Moken elders. “Sometimes the police come, but they can’t be bothered to deal with it.”

The community’s 20-year-old youth leader, Big, says that life in the village can be stifling, forcing many youths to look for a way out.

“We’re restricted to living in this area only – about five acres [2 hectares] – and because of the influx of hotels and resorts around here, the sea has been polluted,” he says. “That makes it difficult to go fishing. So a lot of young people just choose easier jobs, like working in hotels or at 7-Eleven.”

Big adds that the Moken youth have pretty much “assimilated seamlessly” into Thai society, so much so that “whatever ‘bad Thais’ do, Moken do now too”, he notes. “Drugs, stealing, marijuana, glue-sniffing. We never saw this before, and it’s getting serious.”

The village is trying to counter such behaviour by offering classes in Moken language and customs to the children, many of whom are unaware of their traditions. Other classes, directed at teens, offer training as tour guides.

The community leader, Hong, who heads the classes and created the village’s Moken museum, hopes that turning Baan Tung Wah into an ecotourism destination may help get people back on track.

“Moken are supposed to travel, to be nomadic, to travel freely. So if we cannot travel freely, we are dead, culturally at least,” he says. “Moken children use mobile phones, study English and choose to be educated. We’ve abandoned our old traditions so much we risk losing them entirely.”

While many charities working for the Moken promote education and citizenship as giving new “options” to such a vulnerable group, Narumon Hinshiranan – a cultural anthropologist at Chulalongkorn University who speaks fluent Moken and has studied the group for the past decade – says this kind of “one-size-fits-all development … limits their nomadic background”.

“I don’t see education as an ‘option’, I see it as integration into Thai society – so that they are essentially cut off from their roots.”

Those who have pursued this new kind of life – such as Jao’s 23-year-old daughter, Kang, who is so far the only Moken to have graduated from university – may determine what choices the Moken make next.

“I see myself as a bridge between the Moken community and the outside world,” says Kang, who this month starts her first job, as the only Moken teacher at the school on Surin island.

She will be living with her brother Ngui, along with some 200 other Moken villagers, but they will be parallel lives in what seems like a parallel world.

“I like to be out doing things,” says Ngui, thrusting a hand out to the sea to explain why he chose not to stay in school. “I dive to collect seafood, gather it up bit by bit, and sell it to shops. It’s enough to make a living for now.”

The Moken

• The Moken are one of many sea gypsy tribes across south-east Asia: there are the Orang Laut of Indonesia; the Bajau of Malaysia, Indonesia, Brunei and the Philippines; and the Salone (Moken) of Burma

• Thailand is home to an estimated 12,000 sea gypsies, divided into three groups: the Moken, the Moklen and the Urak Lawoi

• A 2003 study by Lund University in Sweden found that the underwater vision of Moken children was twice as good as that of their European counterparts

• Food sourcing is subsistence-based: men traditionally spear fish, or use nets or traps, to find seafood, while women catch crabs and oysters by hand, or dig for shells. They also engage in basic agriculture

• The Moken are often described as sincere and peace-loving, preferring to flee trouble than engage in disagreements

• Traditionally animist, the Moken perform a large spirit-offering festival in the fifth lunar month and celebrate death by singing, dancing and drinking

• Though the Moken give themselves only one name, the Thai monarchy has created surnames for them, among them “Klatalee” (“brave person of the sea”)

• A bucket of sea cucumbers, which the Moken dive for, earns about $10 a day. A small dish of the stuff sells for $30 or more in Taiwanese restaurants

• Moken are often called “dirty islanders” by Thai people, a phrase that has encouraged many Moken youth to adopt Thai fashion and haircuts to fit in

• Surin island, home to a large Moken settlement, was turned into a national marine park by Thailand in 1981, rendering illegal traditional Moken activities such as fishing and logging (in order to make boats)

• Burma has been rumoured to be looking to permanently resettle many of its Moken and has already turned one Moken island into a military base.

Mental health discrimination is coming from the top, not the public

Tags

anxiety, discrimination, employment, government, mental health issues, stigma, suicide

2011:

Mental health discrimination is coming from the top, not the public

The government, together with Comic Relief, has announced £20m further funding for the Time To Change campaign against mental health stigma and discrimination, extending it until 2015. But the big question is, why is the government supporting an anti-discrimination campaign when its rhetoric in relation to welfare reform is saying something very different?

Eighty per cent of people in the Time To Change campaign’s own recent survey said they had experienced stigma and discrimination at some time; 60% say that the stigma people face is as bad as, or worse than, the symptoms, while nearly a third say that stigma has made them want to give up on life. The campaign’s view is that it has “achieved a lot in the last four years”. It says that its campaign is “based on robust evidence from other international campaigns to show what works to change public attitudes and behaviours; and it has been shown to be a cost-effective way of delivering behaviour change on a mass scale”.

There is no reason to question this. But a larger point looms. Is a public education campaign really what is needed, when the principle shapers of negative public opinion actually seem to be the government and the tabloid media?

Speaking as a long-term user of mental health services myself (who has been fortunate to escape some of the extremes of stigma and discrimination), the point that seems important to make is that it may be less a matter of educating the public, than of the government educating itself and the tabloid media. A major lead in stigmatising this group of disabled people seems to have been coming from government and its stereotyping of mental health service users in its campaigns to get people off benefits. Mental health service users are particularly targeted and recent research highlights the negative role of the media and government policy in this.

As one mental health service user, anxious to maintain her anonymity, said to me recently: Institutionalised discrimination runs through the highest levels of government and their departments. People cannot access legal aid or Citizens Advice Bureaux through cutbacks for welfare representation at tribunals. That money could fund charity/human rights lawyers to contest what’s happening to people in higher courts, or an entire advocacy service – but now, instead, it will fund this campaign.

The welfare reform programme of the coalition government has focused particularly on getting disabled people off welfare benefits, particularly the old incapacity benefit and the new employment and support allowance (ESA). In this policy, it is following the last government, which promised to get one million people off incapacity benefit. Sadly, we know that this arbitrary and unevidenced policy hits disabled people very hard. We also know that the group of disabled people it seems to hit the hardest are mental health service users – because they don’t necessarily use wheelchairs, have white sticks or clear signs of impairment. This at least sometimes means that the Benefits Agency and the Department for Work and Pensions have to acknowledge that people are not in a position to get and maintain a job in the often inflexible, discriminatory and poor-quality labour market that is out there.

This shift towards trying to force people into jobs – jobs that increasingly don’t exist and remove them from benefits – has been associated with the most harsh, cruel and inaccurate scapegoating and stigmatising of mental health service users on benefits. We know that the processes of so-called medical assessment are fiercely discriminatory. We know that many mental health service users are feeling increasingly anxious and desperate because of this, with emerging reports of suicide when people are facing the loss of benefits but no prospect of employment. Challenging mental health stigma and discrimination is one policy that needs to come from the top down, rather than the bottom up, and this is a key message for the Time To Change campaign if it is truly to punch its weight.