"Stress and autism are words you can't define in Urdu or Punjabi"

Asian communities are being disproportionately affected by new rules on disability benefits and support.

Life is a never-ending struggle for Roxanna, who looks after disabled son Ahmed. Ahmed, 26, has been at home since his college course ended last year and he is not eligible for a day care centre.

"I have been left to care for my son, no one cares about him," says Roxanna, from Birmingham. "People think Ahmed is mad and that I am cursed. I am not able to work because I can’t leave Ahmed on his own. I only get carers' allowance, Ahmed’s DLA has been cut and he is now on the low rate.

“I am struggling to make ends meet."

This is the situation faced by many families in Britain. Campaign groups say the Asian community is being affected more by the controversial welfare cuts due to the language barrier, mainstream support services not reaching out to them, services not being culturally tailored, and the stigma that remains about disability.

And it could get worse. From October, thousands of disabled people who need to be reassessed for the new Personal Independence Payments (PIP) could have their benefits slashed.

Saghir Alam is a disabilities commissioner for the Equalities and Human Rights Commission. He says that many Asian families who look after a disabled child are suffering due to a lack of awareness about the help available: “Ethnic minority communities are disproportionately more affected by these cuts because they weren’t accessing these services before and some of these services don’t exist anymore. Sometimes they are not faith wise or culturally sensitive and don’t have the resources to do outreach work. A lot of organisations have got no funding as the budget from the local authority has gone down for project funding.

“I know of a parents group for disabled children in Yorkshire which started two years ago - it took nearly two years to get people on board. After one year they lost their funding.

“We need to sit down with community organisations, carers, parents, and ask them rather than [assume] that services are good.”

Other Asian groups that have lost their funding include EKTA Project, a group for the elderly in London that was created 26 years ago.

Alam’s role involves providing advice to councils and support services on how to engage with different communities. He believes that despite the success of last year’s Paralympic Games in London, it has not had a lasting legacy of changing attitudes towards disabilities: “In the mainstream, disabled people still face barriers. If you have multiple identities like race or faith, you face multiple disadvantages.

“There are still attitudes which are Victorian in the Asian community, so a social model has never been promoted. People don’t want to admit they have children with a disability because in society there is still a negative association with disability.”

Alam adds that some families are losing their benefits after going through assessments due to a language or cultural barrier.

The Work Capability Assessments sparked uproar last year as around 40 per cent of people successfully appealed the decision to deem them fit to work. The coalition government agreed for the Atos firm to carry out the assessments to cut £600 million in overpayments to people who no longer qualify for Employment Support Allowance.

Alam explains: “People may not come to town hall or council offices so you need to use community organisations. Families are too busy caring [for disabled relatives] to do that. I know one or two people who have mental health issues, and they lost their benefits and went to appeal. Stress and autism are words you can't define in Urdu or Punjabi. A lot of terms used in assessments sometimes do not translate.”

Another campaigner critical of mainstream services is Mandy Sanghera, a human rights activist and government adviser. "Many families are continuing to care for their family members because most services do not meet their child's needs, they are not specialised," she says. "Many carers are unaware of what services are out there for their child once they leave school we need better transition into adult services. Due to the cuts, we are pushing desperate families into crisis point. “ 

One disabled person that Sanghera has supported is Jeeta, who has multiple sclerosis and is in a wheelchair. Jeeta, 30, who lives with her parents in an area with no suitable ground floor housing, says: “I want my independence and I don’t want my mum to care for me, she is over protective because of my disability. [But] I don't know where to go for help.”

The extent of the crisis is echoed by Sabina Iqbal, chair and founder of Deaf Parenting UK:There is a higher prevalence of disability within the Asian Community due to inter-relational marriage within the family. Most of those families are unaware of the impact of the welfare changes due to [the] language barrier and do not have direct access to information through the media. Reaching out to those Asian families is not easy and is often [done] by the local worker who shares information via word of mouth.”

A spokesperson for the Department for Work and Pensions said Job Centre Plus and councils arrange to meet directly with people affected by going to their homes or arranging a meeting.

On PIP, he said messages are delivered via charities, councils and other stakeholders.

The 'Hardest Hit' march on May 11, 2011 in London, where thousands of disabled people marched against government cuts to benefits, disability living allowances and local services. Image: Getty
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In focusing on the famous few, we risk doing a disservice to all victims of child sexual abuse

There is a danger that we make it harder, not easier, for victims to come forward in future. 

Back in the 1970s when relations between journalists and police were somewhat different to today a simple ritual would be carried out around the country at various times throughout the week.

Reporters, eager for information for their regional newspaper, would take a trip to the local station and there would be met by a desk sergeant who would helpfully skim through details in the crime Incident Book.

Among the entries about petty thefts, burglaries and road accidents there would occasionally be a reference to an allegation of incest. And at this point the sergeant and journalist might well screw-up their faces, shake their heads and swiftly move on to the next log. The subject was basically taboo, seen as something ‘a bit mucky,’ not what was wanted in a family newspaper.

And that’s really the way things stayed until 1986 when ChildLine was set up by Dame Esther Rantzen in the wake of a BBC programme about child abuse. For the first time children felt able to speak out about being sexually assaulted by the very adults whose role in life was to protect them.

And for the first time the picture became clear about what incest really meant in many cases. It wasn’t simply a low level crime to be swept under the carpet in case it scratched people’s sensitivities. It frequently involved children being abused by members of their close family, repeatedly, over many years.

Slowly but surely as the years rolled on the NSPCC continued to press the message about the prevalence of child sexual abuse, while encouraging victims to come forward. During this time the corrosive effects of this most insidious crime have been painfully detailed by many of those whose lives have been derailed by it. And of course the details of the hundreds of opportunistic sexual assaults committed by Jimmy Savile have been indelibly branded onto the nation’s consciousness.

It’s been a long road - particularly for those who were raped or otherwise abused as children and are now well into their later years - to bring society around to accepting that this is not to be treated as a dark secret that we really don’t want to expose to daylight. Many of those who called our helpline during the early days of the Savile investigation had never told anyone about the traumatic events of their childhoods despite the fact they had reached retirement age.

So, having buried the taboo, we seem to be in danger of giving it the kiss of life with the way some cases of alleged abuse are now being perceived.

It’s quite right that all claims of sexual assault should be investigated, tested and, where there is a case, pursued through the judicial system. No one is above the law, whether a ‘celebrity’ or a lord.

But we seem to have lost a sense of perspective when it comes to these crimes with vast resources being allocated to a handful of cases while many thousands of reported incidents are virtually on hold.

The police should never have to apologise for investigating crimes and following leads. However, if allegations are false or cannot be substantiated they should say so. This would be a strength not a weakness.

It is, of course, difficult that in many of the high-profile cases of recent times the identities of those under investigation have not been officially released by the police but have come to light through other means. Yet we have to deal with the world as it is not as we wish it would be and once names are common knowledge the results of the investigations centring on them should be made public.

When it emerges that someone in the public eye is being investigated for non-recent child abuse it obviously stirs the interest of the media whose appetite can be insatiable. This puts pressure on the police who don’t want to repeat the mistakes of the past by allowing offenders to slip through their hands.  And so there is a danger, as has been seen in recent cases, that officers lack confidence in declaring there is a lack of evidence or the allegations are not true. 

The disproportionate weight of media attention given to say, Sir Edward Heath, as opposed to the Bradford grooming gang sentenced this week, shows there is a danger the pendulum is swinging too far the other way. This threatens the painstaking work invested in ensuring the public and our institutions recognise child abuse as a very real danger. 

Whilst high profile cases have helped the cause there is now a real risk that the all-encompassing focus on them does both victims of abuse and those advocating on their behalf a fundamental disservice.

As the public watches high -profile cases collapsing amidst a media fanfare genuine convictions made across the country week in week out go virtually unannounced. If this trend continues they may start to believe that child sexual abuse isn’t the prolific problem we know it to be.

So, while detectives peer into the mists of time, searching for long lost clues, we have to face the unpalatable possibility that offences being committed today will in turn only be investigated fully in years or decades' time because there is not the manpower to deal with them right now.

So, now the Goddard Inquiry is in full swing, taking evidence about allegations of child sex crimes involving ‘well known people’ as well as institutional abuse, how do we ensure we don’t fail today’s victims?

If they start to think their stories are going to be diminished by the continuing furore over how some senior public figures have been treated by the police they will stay silent. Therefore we have to continue to encourage them to come forward, to give them the confidence of knowing they will be listened to.

If we don’t we will find ourselves back in those incestuous days where people conspired to say and do nothing to prevent child abuse.

Peter Wanless is Chief Executive of the NSPCC.