Show Hide image Politics 20 February 2009 Assisted death 2 Helping people who are suddenly physically disabled so they avoid despair and learn to adjust and en The tragic death of Daniel James has naturally provoked a huge amount of ethical debate. Since it emerged that he had chosen to kill himself with the help of a Swiss clinic, rather than spend the rest of his life paralysed from the neck down, there has been much discussion as to whether British law should be changed to allow assisted suicide here. However, while it is important to analyse these ethical questions, there is another equally vital issue which needs to be tackled - how do we stop physically disabled people feeling suicidal in the first place? The newspaper reports about Daniel James's life and suicide make poignant reading. Apparently, he felt his body had become a "prison" and he lived in "fear and loathing" of his daily life. His parents said he found his situation "unbearable" and he was "not prepared to live what he felt was a second-class existence". But such feelings are not inevitable after becoming paralysed. The vast majority of wheelchair users, including tetraplegics like myself, lead fulfilling and active lives. So how do we ensure that people who suddenly become severely disabled don't end up as disillusioned as Daniel James did? What steps should be taken to increase the chances of all disabled people feeling that life is actually worth living? Firstly, there are lessons to be learnt by the NHS. Spinal cord injuries are often caused by sporting, motorbike or car accidents which means that young men like Daniel James are more likely than most to become paraplegic or tetraplegic. But it also happens to be the case that young men are in the highest risk category for suicide. Men account for three-quarters of suicides in the UK and suicide is the second highest cause of death among young men. Indeed, between the ages of 20 and 24 years, men are more than four times more likely than women to kill themselves. It's worth noting that Daniel James was 23 when he decided to end his life. The Samaritans' report Young Men Speak Out has suggested that macho stereotypes may deter young men in mental distress from asking for help. Men have traditionally been brought up to keep quiet about their problems and to suppress their emotions. Some may be unwilling to admit to feelings such as fear and regret that they associate with weakness. Often men feel under pressure to be (or at least appear to be) physically strong, mentally robust and self-reliant which can make becoming tetraplegic harder for them than it would be for a woman. Bearing in mind that Daniel James was a gifted rugby player with a promising sporting career ahead of him, it's not surprising that he found it particularly difficult to adjust to being paralysed. The NHS needs to understand this connection between paralysis, masculinity and mental distress. There ought to be much greater recognition among healthcare staff of the emotional vulnerability of men who have sustained a spinal cord injury. Sometimes healthcare professionals can focus so much on a paralysed person's physical impairment that their mental health needs are overlooked. A Joseph Rowntree Foundation study found that physically disabled people often had difficulty accessing mental health services due to factors connected with their physical impairment. There was little acknowledgement among commissioners of physical disability services that some service users might also have mental health problems. Interestingly, I couldn't find any mention of physical disability in the National Suicide Prevention Strategy for England. This strategy has begun to reduce the suicide rate among young men generally and hopefully this trend will continue. However, the NHS must also ensure that people with spinal cord injuries have easy access to counselling and psychological therapies like cognitive behavioural therapy. According to a report by mental health charities last year, at present the wait for such therapies can be more than six months and in some cases even years. Secondly, the education system needs to better equip young people to deal with setbacks. Although only a small number of people will become tetraplegic, most of us will face disability or illness at some point during our lives. Either we will be affected ourselves or we will become a carer for someone who is. And even if we avoid disability and illness, sooner or later everyone has to confront adversity in some form, whether it be exam failure, economic hardship, unemployment, divorce or bereavement. Teachers need to help pupils develop a set of emotional tools to enable them to cope with life's knocks. For example, schools in South Tyneside have been piloting an 'emotional resilience programme' which aims to show children how to challenge negative thoughts and look for optimistic ways of thinking. Some might argue that this is not the best use of scarce timetable space but there are psychologists, including Prof Martin Seligman at the University of Pennsylvania, who claim that teaching children such emotional skills can reduce their chances of suffering depression in adolescence and adulthood. At the same time, we need to continue the policy of educating physically disabled children in mainstream schools as much as possible. This benefits not just disabled children but also their able-bodied counterparts as well. Would Daniel James have felt so ill at ease with his own disability if he had grown up alongside a wheelchair-using classmate? My guess is that he would have found it easier to adapt to his new circumstances if he had known a paralysed person in the years before. Thirdly, we need a social care system which properly funds the personal assistance a disabled person requires. Was Daniel James relying on relatives for his care in the weeks leading up to his death? If so, was that his free choice? Or did he want to live independently but was prevented from doing so because social services hadn't given him sufficient care funding to meet his needs? I know a wheelchair user who needs assistance during the day plus a carer on call at night, but social services haven't given him funding for his night support. As a result, he has to pay his carers a very low hourly pay rate so that he can stretch out his funding to cover all the care hours he needs. He hasn't been able to give his carers a pay rise for three years. Of course, this means he feels constantly guilty about not paying his carers a decent amount and he has to cope with his carers complaining that they are not being paid a wage which reflects the skilled work they do. Thankfully, he's mentally tough but it's situations like this which could easily make a disabled person depressed and ultimately suicidal. Fourth, it's important that disabled people have greater visibility in the media. If we could see more wheelchair users and other disabled people in newspapers, magazines and on our TV screens, it would significantly improve the image of disability. There have been encouraging steps in this direction such as Britain's Missing Top Model on BBC3 and disabled contestants in Big Brother but what would really have an impact would be recruiting a number of high-profile obviously disabled TV presenters, news correspondents, and actors in dramas and soap operas. This is important not just because representation in the media is a key aspect of inclusion. Boosting the number of disabled people on TV and in the press would go a long way towards 'normalising' disability and reducing people's fear of it. This in turn would make it easier for people to adjust to becoming disabled themselves. Fifth, we ought to establish a national peer support network of paraplegic and tetraplegic people. Suffering a spinal cord injury is a daunting and traumatic event which has an impact on almost every aspect of life. Suddenly there seem to be a million things to sort out - medical treatment, wheelchairs, accommodation, transport, personal assistance and employment to name just a few. A newly paralysed person would greatly benefit from being put in touch early on with another individual who has already been a wheelchair user for several years. This person could then act as a kind of 'mentor', providing emotional support, practical advice and hopefully a role model to follow. While the company of family and friends is absolutely vital during recovery and rehabilitation, what you also need is to be able to talk to someone who has direct personal experience of what you are going through, someone who has already "been there, done that" and who can pass on expertise gained from their successes and mistakes. This kind of support is absolutely priceless. Did Daniel James have the chance to meet and discuss the issues facing him with any other young tetraplegic people in the months after his accident? Today when I look at the photograph of Daniel James having fun with his rugby mates, the photograph taken when he was still able-bodied, I feel tremendous sadness. I'm sad not because he became disabled but because he died before he had learnt to enjoy himself again. And I am also struck by pangs of guilt. I imagine it's similar to the feelings experienced by those war veterans who march past the Cenotaph each November. It's the guilt of the survivor. Both Daniel James and I have been through the same battle, but I am still here and he isn't. Obviously there have been times when I've felt miserable - I'm not some kind of Pollyanna character who spends every day with a Cheshire cat grin on her face. One of those low points occurred when I was eight years old, about 18 months after being made disabled by a tumour in my spinal cord. I remember saying in frustration to one of my parents, "Why me? I wouldn't want this to happen to anyone else, but why me?" (Later I realised I was asking the wrong question. Instead of asking "why me?" I should have been asking "why not me?". Let's face it, the human body is an incredibly complex organism and, with six billion people on the planet, it would be ridiculous to expect all of those bodies to function perfectly all of the time. And it's a good thing that it should happen to me instead of some other girl. Arguably, a child like I was with supportive, relatively prosperous parents is in a far better position to be able to cope with becoming tetraplegic than one growing up in less fortunate circumstances. And I have been lucky. I've never felt suicidal. One reason for this is that I have a huge curiosity for what's going on in the world (I suppose that's why I went into journalism). If I had died by suicide 18 months after becoming disabled as Daniel James did, I would have missed out on such momentous events as the fall of the Berlin Wall, Nelson Mandela's release from prison, the election of Barack Obama and John Sergeant's efforts in Strictly Come Dancing. I hate the thought of events taking place in the world and me not knowing anything about them. Is it possible to pick up the Today programme in the afterlife, I wonder? Another reason is that I have a stubborn streak in my personality. If every disabled person in the UK decided to take their own life, then suddenly there would no longer be a funding crisis in social care and our political leaders would be spared a major headache. I certainly don't want to make life any easier for politicians. But the main reason is that I regard myself as having a fantastic life. I carry out a well-paid, highly respected job. I live in an attractive flat in West London. I enjoy the satisfaction of serving as a school governor and helping charities. I lead a busy social life with frequent trips to the theatre, cinema and exhibitions. I have numerous friends who are prepared to put up with my warped sense of humour. And, above all, I know that there are people in my life who love me and care about me deeply. Why on earth would I want to leave behind all that? By Victoria Brignell Victoria Brignell works as a radio producer with the BBC. After reading classics at Downing College, Cambridge, she undertook journalism training at Cardiff University. She lives in West London and is 30 years old and is a tetraplegic wheelchair-user.