The Assisted Suicide 'Debate' - Expoilted Families, The Media and The Medical Model.

I have considered this blog entry carefully as I’m about to talk about a family who have recently suffered a bereavement.  So when writing this I will do my best to tread with tact and sensitivity, qualities I’m not renowned for.  However a half an hour feature on Victoria Derbyshire’s BBC Radio 5Live programme really disturbed me last week. 

The objective of the feature was to talk to various members of Tony Nicklinson’s family about his death and the wider issues surrounding assisted suicide.  Mr Nicklinson died of pneumonia in late August only days after losing his case at the High Court to challenge the murder laws to make it easier for a doctor to help him to die.  The majority of time was taken up by a recorded conversation between Jane Nicklinson, Tony’s widow, and a wife of a man with locked-in syndrome (her comments voiced by an actress and was referred to as ‘Felicity’). They repeatedly asserted the idea that starving to death was the only option left open to their loved ones and casually talked about changing the law. The conversation meandered back and forth between two women who had never met before. Both women commented that their husband’s interests before their strokes were similar as both men were very active and into rugby.  Jane, a widow for only a month, sounded in shock as she asserted:

“I think knowing what they were like beforehand makes a big difference. If they were the sort of person that used to sit in front of the TV twenty four hours a day and never got off their bums to do anything, okay, but because they were so larger than life and active erm...this life locked in for them is a living nightmare.”  

This comment is very strange, and at best slightly offensive, but is from a woman who has only lost her husband a month ago so can maybe be excused.  However it does seem to be a concept that is in line with a general media schema that sudden disability is impossible to handle if you’ve been sporty before the incident that disabled you. This was evident in the shocking case of Daniel James, who assisted by his family, ended his life at Dignitas only eighteen short months after the initial injury that left him paralysed from the neck down.  His condition although extremely severe was not degenerative and, he could have gone on to live a very fulfilling life, despite his extremely severe physical impairment. The fact that Daniel was a very promising rugby player, and that his life revolved around him playing the sport, before his accident was repeated again and again in the media coverage surrounding his death. This was used as some kind of explicit justification, overriding all other factors, as to why the family acted with such urgency in helping Daniel carry out his wishes.  I strongly suggest that eighteen months is a ridiculously short amount of time to come to terms with a life severely altered by the traumatic experience of sudden impairment.  I also strongly believe that it is within the amazing capabilities of humans to adjust to extreme impairment given time however sporty they may have been before their injury.  

As the conversation between Jane and Felicity continued, Felicity reported that Martin refused to get out of bed all year apart from when they were going on their annual two week holiday.  Jane also reported that she had an adapted car that made it possible for her and Tony to go out but that he would consistently refuse to leave his bedroom.  This behaviour seems to me to be a symptom of severe depression that is no doubt brought on by sudden and severe impairment, but nonetheless could be challenged. I have to wonder if a non Disabled person didn’t leave their bed for months on end would society condone suicide as a valid solution to the situation.  You get the impression that caring for their husbands had taken a physical and emotional toll on the two women and no doubt the two men and their families would have benefited from a lot more professional support.  I do wonder if the energy they expended in going to the High Court could have been better spent investigating and fighting for more support and investigating more imaginative ways to engage the two men’s minds and get them inter-acting with life despite their undisputed severe physical impairment. 

It is extremely telling that depression, as a treatable illness is never mentioned in the media coverage of severely disabled people campaigning for assisted suicide to be made legal.  This is despite very clear evidence that these people are under a huge amount of stress having encountered a dramatic shift in lifestyle and social status, as a result of sudden severe Disability. The omission of possible clinical depression, by the media from coverage of these people repeatedly saying they wish to end their lives is blatantly a symptom of a disablist society.  This very omission implies that the suicide of a severely disabled person is more understandable, and therefore less tragic, than the suicide of a non-disabled person.           

The conversation between Jane and Felicity carried on for some time and was the platform for some very ill-advised quotes by both women. I am not comfortable with  giving a blow by blow account of the rest of the conversation, but it was evident in my opinion that Jane hadn’t even begun to process the events of the last few months and should have been nowhere near a 5Live microphone.

The feature ended with Victoria Derbyshire interviewing Jane and her three daughters in the studio. This seemed even more inappropriate than the free flowing conversation between Jane and Felicity. The interview seemed incredibly intrusive as Derbyshire went from daughter to daughter asking how they were coping. There seemed an asserted effort by the daughters to deny that they were even mourning Tony because he didn’t want them to do that. The daughters seemed to be focusing on continuing the “right to die” campaign and honouring their father in this way. However, the daughters said some horrifically insensitive things about the issue of assisted suicide which gave the impression to me that they weren’t dealing with their father’s death as well as they maintained they were.  5Live in having them on so quickly after Tony’s death seemed to dehumanise them and Tony, making it all about what they portray as the latest liberal crusade of ordinary people against an unsympathetic establishment. The issues around assisted suicide are of course much more complex than Victoria Derbyshire has ever seemed to consider, why else would she let such emotive, ill-informed content onto her show.

One of the assertions the daughters made was that people who campaigned against any change in the law pertaining to assisted suicide were emotive and illogical. In my opinion the idea that the anti-assisted suicide lobby has ill-thought through emotional arguments is preposterous, especially considering the way people campaigning for a change in the law behave. The way the media colludes with people arguing for assisted suicide is evident in the 5Live piece. It is the worst and most sinister application of the medical model of Disability that says a life is over when a person dramatically loses physical functionality. In its worst instance euthanasia is romanticised as Terry Pratchett does in the extract from his 2010 Richard Dimbleby lecture below:

These days, non-traumatic death – deaths that don't, for example, involve several cars, a tanker and a patch of ice on the M4 – largely take place in hospitals and ­hospices. Not so long ago, they took place in your own bed. The Victorians knew how to die. They saw a lot of death. And Victorian and Edwardian London were awash with what we would call recreational drugs, which were seen as a boon and a blessing to all. Departing on schedule with the help of a friendly doctor was quite usual. (Terry Pratchett’s Richard Dimbleby lecture Shaking Hands With Death, which was broadcast on BBC1 on 1 February 2010)

 

And it’s in this framework that we are lead by the media to understand this issue, there is minute mention of the social effects of relaxing the law on assisted suicide. In many ways the media treat it as a cause celebre that an imagined liberal caring society, free from disablism, could handle and police.  However, the media seems unable even to resist the temptation of holding this debate on the most emotive and sensationalist terms possible. How can we even consider a possibility of changing the law when we are unable to debate sensibly the issues that involve the safety of thousands of disabled and ill people?  The answer is, that it is impossible to, when the BBC even fails to recognise that a grieving family only a month on from a tragic bereavement is not in any fit state to talk about a complex issue that affects many.                

Near the end of the interview there came a shocking question from Derbyshire, she said “Is it alright to ask what you said to him in those final moments with him?” It’s like the access Tony gave in allowing himself to be filmed being cared for was presumed to have been carried over to this interview by the 5Live team. To Jane’s credit she answered in very general terms and in doing so virtually side-stepped the question.  However, there has developed a disturbing kind of voyeurism around the media treatment of families of extremely impaired or ill people campaigning for the right to die which is fundamentally de-humanising.  I can’t help but feel that the media are exploiting confused, stressed, and, in this case, recently bereaved families  with the proviso that they are campaigning on behalf of these very families that they exploit. 

If the media is so fixated by this debate, why are experts in palliative care very rarely asked on these programmes to debate the issue?  Academics, medical professionals and disabled activists should be heard equally as loud as disabled people who want to end their own lives.  I don’t really know why this is not the case but I can guess.  It’s about the story that both feeds off the medical model of Disability but owes a lot to romanticising ideas of euthanasia.  The concept that over time people can adjust to severe impairment is still very unfashionable because, despite us all enjoying the Paralympics, society still gives credence to the idea that some severe levels of impairment are worse than death. 

One of Tony Nicklinson’s daughters is right when they say that many people who are against assisted suicide being made legal are less impaired than many who are fighting for it.  However, this is not a reality across the board as many extremely Disabled people in the later stages of degenerative conditions remain firmly opposed to any way of making it easier for Disabled people to be helped to die.  There are arguments about extreme pain suffered at the very end of life but experts in palliative care maintain that no-one has to endure unbearable pain any more if the right treatment is found for the particular individual.  Indeed, there is already legal room for unlimited pain relief to be administered to limit the final days of suffering. 

What the real crux of the issue is for me, is that people who campaign for assisted suicide don’t focus their argument at all on the relief of severe pain but instead concentrate intensely on the concept of the ‘indignity of Disability’.  This was demonstrated when Victoria Derbyshire asked Jane Nicklinson what she thought Tony’s legacy would be and she replied:

“He’s left behind a huge legacy, the fact that he was happy to be filmed laughing, crying, dribbling, being fed, being hoisted – I think he showed the world how awful someone’s life can be”.          

As a severely Disabled man myself, who gets fed his meals, hoisted in and out of bed and, indeed, dribbles - I find this last quote offensive but more than that I find it highly concerning.  The Social Model teaches us that it is not the impaired body that disables people but rather society’s disabling attitude to that individual. I do not seek to overly criticise Jane Nicklinson personally for what she said, but do whole-heartedly condemn the British media who repeatedly collude with the viewpoint that impairment is tragic.  My life is not awful, and that is not ‘despite me having a severe impairment’ but is because all Disabled people with the right circumstances can lead just as fulfilling a life as their non-disabled counterparts. However the sad fact is that the media misrepresents Disability and makes it a lot harder for people who suddenly find themselves severely impaired to cope with their new situation.  It’s time society grows up and accepts Disabled people.  This is the only way forward for the families who are shocked, confused and traumatised by sudden impairment.  Only when Disabled rights are vastly improved can we even consider starting a sensible debate about assisted suicide but as the BBC Radio 5Live feature, I have discussed, shows we are decades away from that point in time.

 

 

 

 

London 2012, Redefining Disability And The Abandonment Of The Social Model

During the Paralympics ‘Disability’ was the word on everybody’s lips. However, whilst attention was transfixed on Disabled athletes from all over the world, the term ‘Disabled’ was being rejected, denied and redefined everywhere you looked.

While listening to BBC 5Live’s coverage of the games I heard a Paralympic swimmer talking about his work going into schools, talking to children and challenging perceptions.  He reported that he would regularly ask the kids who was more Disabled, them or him, when swimming.  His point was that he was a much better swimmer than them, even though he is Disabled and they are not.  His message that we all have different abilities in certain situations is hard to disagree with.  However his choice to challenge the whole definition of what is Disabled is something that concerns me.

However, this is not just a product of a poor athlete caught a bit on the hop by a radio presenter, looking at him with big wide eyes, waiting for him to say something profound about only having one leg (insert your favourite impairment here).  No, Philip Craven the President of the International Paralympic Committee appears to have a major problem with the term ‘Disabled’.  So much so that he publicly campaigned for the word to be totally absent from any of the games’ coverage.  In the London Evening Standard of 17^th April 2012 he is quoted as saying:

“The term disability is something I don’t like. The use of the D word collects together some mythical group and marginalises them. We have to recognise that everybody is an individual. It doesn’t matter if you use legs and I use wheels”.

This is an outrageous and offensive statement to me as a Disabled person who has grown up with a shared experience with other Disabled people of a world that, despite Oscar Pistorius running very very fast, still discriminates against us.  It was not a mythical group that I drew strength from when wrestling with my identity in my teenage years.  Nor mythical were the pro-active members of the group that united together to campaign for the rights that Disabled people enjoy today.  The word ‘Disabled’ does not marginalise us, a society that is unwilling to adapt to difference is what marginalises us.  A society which, however, is continuously improving and becoming more accepting must also be more confused than ever over what is acceptable language to describe people like Sir Philip Craven and me.  We learn from Craven in this next quote that he does not seem to gain as much as I do from being united, with others, by the experience of being disabled. 

“Don’t use terminology that gives a negative impression. If you need to talk about the blind, visually impaired, deaf or wheelchair users, no problem at all. What the blind person needs is completely different. What the deaf person needs is completely different. So get rid of that D word.” (London Evening Standard April 2012)

This is a mind-boggling statement, considering that Craven is the President of the organisation that oversees the running of the Paralympic Games which requires elite athletes to be Disabled in order to qualify to compete.

One of Craven’s main reasons for disliking the word is that in other contexts ‘Disabled’ means broken or inactive.  The word ‘Black’ has similar negative linguistic baggage when used in some contexts however Black people, instead of rejecting it, own the word and have redefined it as positive when describing their community.  So too I propose Disabled people are self-confident enough to accept that language moves forward and definitions change within society.                  

A major redefinition of the terms ‘Disabled’ and ‘Disability’ was indeed attempted, but as a recognition of unity, inspired by the Civil Rights Movements of the 1960’s.  In 1975 the Union of the Physically Impaired Against Segregation (UPIAS) sought to establish that the reaction to disabled people by others, was in fact the disabling factor in their lives rather than their impaired bodies.

"In our view it is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society." (UPIAS, 1975).

This approach was later termed ‘The Social Model of Disability’ and actually redefines Disability as being in a position where the society around you excludes you on the grounds of your impairment.  International law, UK anti-discriminatory legislation and Disabled academic studies all use the definitions that The Social Model outline.  In this way, even if you are being introduced to The Social Model for the first time reading this, it has revolutionised the way we all view Disability.  However, the definition of ‘impairment’, the physical condition, and ‘Disability’, the barriers erected in the path of those that have impairment, have not been assimilated into everyday usage.  Moreover when Paralympians suggest they’re not disabled in a pool due to their excellence in swimming it would seem that by implication they are defining being Disabled as being useless.                     

The misguided simplification of the term was evident in a debate on Newsnight, August 30th 2012 -the eve of the Paralympics, where comedian Francesca Martinez claimed boldly that we all, referring to the entire population, have disabilities.  The general gist of what Francesca argued was that everybody has things that they are not so good at. I would suggest that terming things that people are not adept at as ‘disabilities’ is tremendously unhelpful.  Francesca has cerebral palsy but rejects the label preferring infuriatingly to refer to herself as “wobbly”. 

The idea that individual Disabled people can play fast and loose with definitions because the label partly describes themselves, ignores the lengths we have come in terms of Disabled rights.  It is united under the label ‘Disabled people’, which describes our oppression as well as our physical state, that we have been recognised - if very limitedly - as a group with things to offer to society and in a roundabout way has allowed Francesca Martinez to be speaking on Newsnight in the first place.  In claiming that everybody has disabilities Martinez is denying the power and sense of solidarity that a lot of Disabled people feel. This is ironically similar, in result, to Philip Craven’s notion that the word ‘Disabled’ should be phased out.              

I am left bemused by the disowning or neutralising of the label Disabled to different extents by differing good swimmers, comedians and Presidents of sporting organisations. It would seem to me that saying that Disabled people are individuals and share limitless aspirations and opinions with their non-disabled peers is different from saying that Disabled people do not exist.

The three examples above of statements that question in different ways whether the concept of Disabled people is still relevant in 2012 are drastically missing the point.  Moreover they are totally abandoning not only the admittedly abstract notion of the Social Model but also the actual gains the Disabled Rights Movement have achieved by applying it.  As we Disabled people slowly but surely gain more of a voice within British society we cannot use it to deny that we ever existed in the first place.  Disabled people are diverse in politics, ethnicity, economic background and personality as well as endless other things, but we are united under a label. 

I think the word ‘Disabled’ is being subtly redefined all the time.  So when people encounter Disabled people in their everyday life, which happens constantly without the universe melting into an organic sludge, those individuals come to their own conclusion that the term ‘Disabled’ can mean many things all at once.  Which I think is really what Sir Philip Craven, Francesca Martinez and the Paralympian who goes into schools were driving at when they made their various statements about the word ‘Disabled’.  The world is realising that disability encapsulates a broad spectrum of people and experience. I’m not sure whether this control-freakery about what disability means is helping but I’m definite that making confusing statements about terminology will only lead to a stereotype of a group of people who are pedantic about language. 

 

 

The Paralympics : A celebration of elite sport but also a false dawn.

As I watched David Weir come home for Gold in the 1500m last week from the Disabled seating in the Olympic stadium, I got carried away.  I thought that Disabled sport had finally come home to the recognition of the British public and certainly the record ticket sales and Channel Four’s superb unprecedented coverage suggest this is so.  However, I seemed to be not the only one carried away downstream by this rush of enthusiasm.

The Paralympics seemed to have contracted the obsession with legacy from its bigger well known cousin the Olympics.  As we were all glued to the sport on Channel 4 other media outlets, particularly the BBC, seemed to be trying to compensate by tackling what they deemed to be the single generic topic labelled ‘Disability’. 

The discussion of legacy of the Paralympics seems to be different from that of the Olympics which was excellently foreseen by the comic premonition of the BBC sitcom Twenty Twelve.  In the case of the Paralympics the media debate is not obsessed with the legacy of Disabled sport and increasing participation, but instead is overly concerned with the long-lasting effects of the games on the lives of Disabled people in the UK. 

Even as events got underway on the first day of competition, Thursday 30^th August, BBC Radio 5Live had a phone-in that asked if the Paralympics would change attitudes to Disabled people.  Immediately detracting away from the elite sport and burdening the event with a massive emphasis on possible social change that supposedly might have occurred at the end of the eleven days.

One of the first callers to 5Live on that opening day was a lady, whose Disabled daughter’s co-worker said to their boss that he would no longer hold open the door to the accessible toilet for her. Although, the case might seem shockingly petty my question is this – Was the Paralympics a serious sporting event or an opportunity for a lazy if well-intentioned rebalancing of things by the media? A media guilty for years of misrepresenting Disabled people and their vast diversity of experience.  I personally don’t see any connection between David Weir, starting out on a gruelling Paralympic campaign, and some non-disabled person not holding open a door for his Disabled work colleague in some random office.  Nor do I think Weir’s amazing four gold medals that we witnessed in the eleven days that followed, will make any difference to the non-disabled office worker in the toilet door controversy. 

It seems to me that asking the question will the Paralympics improve the lives of Disabled people is like posing the question will Mo Farah’s Olympic double reduce the rate of racist attacks in the street? 

If a member of a social minority achieves sporting greatness emancipation for every other member of that minority, with their differing education, economic prospects and personalities, does not necessarily follow.  However, this blatantly obvious point is not my main concern.  I instead suggest that the media posing such an ill-thought out question is a major problem. 

Another caller to 5Live who was visually impaired since birth claimed that a lot of Disabled people had a “woe is me attitude” and therefore didn’t help themselves. I yet again sat there listening wondering what on earth that had to do with the Paralympics.  Mind you I am aware that the Disabled population of the world is vast and while some are elite athletes, some may well be drowning in a thick pea soup of self-pity while millions may not conform to either of the above. This attempt to define both how ‘Disabled people’ are treated and how they behave is an extreme exercise in reductionism.

On the night of the opening ceremony Newsnight asked exactly the same question to a panel of Disabled people, as it happened all women. The panel was made up by comedian Francesca Martinez, actress and model Shannon Murray, ex-Paralympic basketball player …with VT contributions from the broadcaster Liz Carr and Dame Tanni Grey-Thompson. The conversation lead by Kirsty Wark soon veered quickly from sport, with only a cursory mention of the Paralympics, into the ever increasingly clichéd topic of the way Disabled people are treated by the general public; before turning sharply again to touch on government cuts to services, and finally flirting quickly with disability hate crime. It was for all the world like the producers on Newsnight said to themselves “Ah while we’ve got the ramps set up we might as well pack in a few issues we wouldn’t normally cover”.

The way government cuts will affect Disabled people is an important and complex debate, which no doubt needs to be aired, as does the very concerning rise in Disabled hate crime. However again I ask the question what on earth do these issues have to do with the opening of the 2012 Paralympic games. When they awkwardly seguewayed between the debates Newsnight showed contempt for the very serious separate issues they tried to cram in, but also contempt for the second largest multi sport event in the world. The array of Disabled comedians and actors making up the panel no doubt had very valuable personal experiences of disability, but surely they weren’t all experts in the field of benefits or Disabled hate crime. Although on the VTs Dame Tanni Grey Thompson and Liz Carr made considered comments about the possible cultural impact of the Paralympics, these too were lost within the noise of the general meandering vague debate about everything ‘Disabled’.

These examples of BBC programmes echoed statements from David Cameron just before the closing ceremony, and other dignitaries that the games had changed the perception of Disabled people. The news media and the political elite make these statements like they have no control over the generalised stereotypes that exist in the public consciousness. In this way the meaning makers of our society wash their hands of the great power and influence they have over the national agenda and place the job of more accurate representation in the lap of the Paralympics. As if the knowledge that some amputees can sprint at incredible speeds, will be the sudden wake up call for the public to identify and work to eradicate inequalities that various Disabled people face.

The reality is that Disabled people and non-disabled people have lived, worked and have been in relationships together for decades. The narrative that Weir’s, Simmonds’ and Peacock’s great sporting achievements, have somehow introduced for the first time the idea that Disabled people are actually real human beings is absurd. Even before we were all gripped by the wheelchair rugby and sitting volleyball, non-disabled people had encountered Disabled people every day and there was not always an unbearable awkwardness between the two parties.

The Paralympics may have shifted somewhat the balance of media imagery away from the portrayal of tragic victims for a while, however the inequalities that Disabled people suffer, are deeply entrenched within our society’s institutions, language, and culture. These inequalities affect Disabled people differently to varying degrees and have been re-enforced by years of behaviour. Therefore the concept of “attitudes to Disabled people” is not a fixed phenomenon and makes the question of  the Paralympics changing “attitudes” a ridiculous one.       

          
         Personally my favourite misguided quote that came from this constant murmur intent on attributing greater social importance to the games was from a Paralympian herself.  Unfortunately, I didn’t catch the name of this sage but she said on 5Live that she had seen a lot of Disabled spectators at the Olympic Park and this was great because they could see what it was possible to achieve.  Now I attended three separate Paralympic events, and I am indeed disabled, however I was well aware of my potential to achieve many things in my life before visiting Stratford and cannot report that a great revelation came to me while sitting in the Aquatics Centre.
        
          I loved the Paralympics, it was great sport and great entertainment, but not some great instrument of social change.  Sadly things are just a touch more complex than that however much the media and politicians may suggest otherwise. The 2012 Paralympic Games were a great success, maybe Disability Sport has come home, certainly they were a gripping final instalment of our great British summer of sport.