I doubt more than a handful of Americans know who Keir Starmer is. In fact, I doubt a large number of British citizens know who Keir Starmer is. Don't let this lack of knowledge seduce you into thinking Starmer is not an important or powerful man. Starmer is in fact an extremely powerful public figure in Britain. Since last November Starmer has been the director of public prosecutions and thus head of the Crown Prosecution Service. This week Starmer will unveil guidelines on assisted suicide prompted by a string of very public cases. Foremost among these are Debbie Purdy, a woman who has MS and has expressed her strong desire to commit suicide. Ms. Purdy wants to know if her husband will be prosecuted if he assists her suicide. The other well known case is one I have already written about and concerns Daniel James. Last year James, a 23 year old man who experienced a spinal cord injury, with the help of his parents committed suicide. Starmer decide not to prosecute James' parents and at the time stated "This is a tragic case, involving as it does, the death of a young man in difficult and unique circumstances. The CPS had ample evidence to charge James's parents under the Suicide Act which states that it is a criminal offense to aid, counsel, or procure the suicide of another". Starmer did not minimize the seriousness of the offense but maintained Daniel James' desire to end his own life was not influenced by his parents. Starmer also believed if James's parents were convicted they would have received nothing more than a slap on the wrist.
The debate over assisted suicide since Daniel James ended his own life with his parents help has simmered without stop in Britain. I have followed this debate from afar as its implications extend well beyond the borders of Britain and are directly relevant to people with disabilities. This connection is obvious to me but a little background is needed. Debbie Purdy referred to above convinced the court in July of this year to direct Starmer as head of the Crown Protection Service to produce a policy statement on whether people who help someone kill themselves will be prosecuted. This policy is set to be issued Wednesday and is designed to clarify when individuals are most likely to be prosecuted when aiding someone to end their life. Although Starmer has been coy with the press prior to the release of the policy statement, he has told BBC News that "the general approach we've taken is to steer a careful course between protecting the vulnerable from those that might gain from hastening their death but also identifying those cases where nobody really thinks it's in the public interest to prosecute." What Starmer is really saying is that he does not want nor has he expressed any desire to prosecute people like Daniel James' parents. Thus do not get confused by Debbie Purdy story and the headlines of the last year. Purdy is of secondary importance, a means to an end for those pushing to make assisted suicide legal. The real issue, the test case, concerns Starmer's decision in 2008 not to prosecute Daniel James' parents.
The guidelines that will be released by Starmer on Wednesday are not merely of theoretical interest. In Starmer's estimation he is seeking to bring clarity to many people in Britain who are interested in ending their life. Undoubtedly the fact Daniel James and well over 100 others have gone to the Swiss suicide center Dignitas to die prompted this need for clarity. Let me be clear: Starmer's policy does not concern people who are terminally ill. Starmer's policy guidelines concern all people and I suspect will pave the way for people like Debbie Purdy to end their life without fear family members will be prosecuted for any and all assistance. This is why Daniel James is so important--his death has provided the much needed precedent and time for Starmer to clarify his thoughts. When Starmer decided not to prosecute James' parents he issued a lengthy explanation of his decision. That decision will have sweeping implications because it no longer concerns one young man who is paralyzed or those that express an interest in going to Dignitas. In an interview with the Guardian Starmer has stated that "The one thing I hope I have made clear is that this policy will cover assisted suicide wherever it takes place including England and Wales. It shouldn't be something that covers those that go to Switzerland and not those who can't afford to do so." To me this sounds like an endorsement of assisted suicide. Starmer is not changing the law but it seems crystal clear that any compassionate partner, loved one, or family member can end the life of someone who wants to die. This reinforces the public sentiment expressed about Daniel James' parents when news broke they took their son to Dignitas to die: they were loving parents in an impossible and singularly unique situation. They put their son's desires ahead of their own and selflessly helped him die. After all, who would want to live life paralyzed, "wheelchair bound" and in their estimation a "second class citizen". Starmer has been quoted that the police interviews with Daniel James' parents "would make you weep." What I want to know is what are James' parents and Starmer weeping about? Did they cry about James life as a second class citizen and what that means to others in a similar situation? Did they weep because people with spinal cord injuries in Britain encounter stigma at every turn and are unemployed in larger numbers? Did they weep because Daniel James had no housing options other than moving back home with his parents or an institution? Did Starmer consider the larger implications involved in not prosecuting Daniel James' parents? These are hard questions to answer, one's that don't garner headlines or pull at the heart strings of people. These questions are important because people with a disability have been sent a message by Daniel James' parents and Starmer's decision not to prosecute. The message is as simple as it is deadly. The life of a person with a disability is not as valuable as a person without a disability. There are no ifs, ands, or buts involved here. The message is not subtle: the life of people with a severe disability is very hard and we understand this suffering. We are willing to help end your life and your loved one's will not be prosecuted. The logical corollary is that people with a disability will be expected to feel like, well, just like Daniel James did, a second class citizen. As such, people with a disability are a burden upon others and will be made to feel a perverse obligation to end their supposed suffering.
The deadly logic above conveniently ignores the fact people with a disability, if they suffer at all, are suppressed not by a given bodily deficit but by the social stigma attached to such a deficit. For instance, I think my wheelchair is a liberating device and consider my paralysis to an integral part of who I am as a human being. In contrast, others see my wheelchair as symbol of disability, weakness, and limited expectations. In short, my life is a tragedy. This faulty line of reasoning is not only infuriating but has far reaching implications that extend beyond disability. If Starmer is not going to prosecute those that help people end their life what will he do about people who are eager to push the boundaries of the new guidelines? What will Starmer do with a man like Michael Irwin who wants assisted suicide made legal and is willing to help anyone end their own life? Can Irwin help hundreds of people die assuming he does not profit from their deaths? And where does one draw a line between assistance and encouragement? For instance, will people in Daniel James' situation immediately following a spinal cord injury be told their options are life with paralysis or death? Will those options be explained in a balanced manner? Will a person that has no experience really be able to make an informed decision in such a situation? In asking these questions and many others in this post I keep returning to Daniel James. His death and the actions of his parents haunt me. No matter how depressed I was when initially paralyzed I never considered ending my life. In fact the hardest thing I have been forced to cope with as a person with a disability is the knowledge that others think my life is somehow less sweet and worthwhile because I use a wheelchair. I get this message loud and clear as did Daniel James and his parents. Thus significant obstacles remain common place and prevent people with a disability from leading a rich and rewarding life. Some people like Daniel James are even willing to end their life because they cannot confront the social and practical inequities associated with paralysis. Worse yet, his loving parents are lauded for their actions and one man in a position of power is going to use this case to pave the way for the deaths of many others, some with and some without a disability. Surely we humans are capable of much, much more.
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11 comments:
Superb post, scary topic. I was a person who had no issues about assisted suicide until I started reading Dr. Mostert's posts and then your posts...I had never looked at it the way you two presented it. Now, I oppose the whole deal. There is so much spin on it, no wonder it all sounds so wonderful to kill yourself. It is, in the end, very sad that a person feels so alone and so unsupported that they would prefer death. It an indictment of our society.
Thanks for continuing to educate us about this important issue.
I've been very interested (on an emotional level, not just an observational one), to see my grandfather make very different decisions than what was in his advance directive once he more fully understood the implications--i.e., disability is better than death. He also wants to continue to live and regrets that he will die, despite the high level of pain he's in now from highly metastasized cancer. I have no doubt that people with terminal illnesses that require this much care (or where something like a trach or other 'life support' is required) will be encouraged to see their situation so negatively that they should end their lives.
Just last night, I was reading a news story about a man with recent high-level quadriplegia who still enjoys a very rich life surrounded by friends and family, though his medical conditions are difficult. Even though he makes it clear he wants to live, one commenter described him as an empty shell, talked in strong terms about how he'd want to die in the same situation, and supported this man (and others in his situation) ending his life.
In one recent textbook I used to teach from, one chapter dealt with both the death penalty (for criminals) and euthanasia in the same chapter--a shocking connection to make, with no explanation provided about why these essays were put together. While I questioned this, I don't think most teachers would have thought about the way the essays were grouped.
Claire, At first glance assisted suicide seems like a reasonable idea. Once the veneer is removed and the slick spin exposed on why it should exist we are left with not only a bad idea but a dangerous one as well. Like you, I consider the unfettered support for assisted suicide an indictment on society. Instead of ending life we should be enhancing it regardless of the form it takes.
Frida, No need for thanks--anyone can do what I have done in writing about the debate taking place in Britain. There is indeed a powerful emotional component to assisted suicide and end of life issues. Years after my father's death I cannot get the over idea that the end of his life was grossly unfair (he had several strokes and experienced dementia). Regardless, you are correct advance directives and what people decide when terminally ill can differ significantly. How this is rectified is a difficult matter for some families.
One point I did not mention in my entry and your comment about the news story concerning a person with spinal cord injury reminded me of it. In many articles on assisted suicide the image of Debbie Purdy using her wheelchair is utilized. Sure she prompted the soon to be released guidelines but why is it that the image of a person using a wheelchair is invariably used when the subject of assisted suicide is discussed in the news? Could it be that our lives are not symbolically perceived to be worthwhile?
Interestingly, I have come across two very different views on "acquired disability" if you don't mind the term (as opposed to born with). A dear friend of mine's husband commit suicide after becoming paraplegic (not assisted...he found his pills and took them all). He was a real macho dude who could not imagine having his wife help him for the rest of his life...plus he was depressed (is this not a significant issue as well? Not really fair to support someone to die while depressed, eh?) Then contrast that and the mentality Frida mentioned (the "empty shell" writer) with the doctor who told a young new paraplegic that he was going to "rock the world in a wheelchair"...the kid is now a paralympic skier.. and our own neurologist who, upon telling us that Sophie would never walk again said, "well, that's not a big deal...you can have a normal life in a wheelchair". Attitude is everything.
Claire, I do not disagree attitude post disability is a key issue. However, a positive attitude does not get one a job, an accessible place to live, an appropriate wheelchair, expensive cushion to prevent sores, etc. When you combine the financial inequities with the social stigma attached to disability far too many give up before they have given life a chance after an event like a spinal cord injury. To makes matters worse, there is a perverse sort of respect awarded those that end their life. Hence your reference to a macho guy committing suicide is a perfect example of this mentality--"I am so tough I can kill myself". To me this is a cowardly and selfish act. It is far more difficult to wake up every day, go to work and know some person you passed on the street or may even work with daily thinks your life sucks and is not worth living. As for depression, this is a logical and normal response to a disabling condition. Luckily it is a short lived response if one has appropriate familial and professional support. As always, thanks for your comments. They always make me think.
Bill, do you think it's any easier in Canada, job, attitude, etc. wise? I'm not being nationalistic here...I don't even know if you can answer. I know it's a joke that Canadians are "polite" but I'm not sure they are as forthcoming with their opinions...and for all I can tell, there seems to be alot more in terms of accessibility?? I think Elizabeth McClung is Canadian...are you reading, E? I truly don't know...our governor general is post-polio disabled and is in a scooter. Perhaps I am naive/stupid?
Claire, I am not sure about easier but have no doubt Canada and America have different cultural responses to disability issues and disability rights. We Americans sure are free with our opinions (this is a strength and weakness). I suspect many Canadiens with disabilities do not encounter the same trouble Americans have in terms of being able to afford needed durable medical goods. We are at the mercy of private insurance companies that take a dim view on spending money on expensive things like wheelchairs. Yes, I read Elizabeth McClung's blog and it is a very good one. I do not think you are naive and I know you are certainly not stupid. I have read a bit about your governor general and more personally I have enjoyed my few trips to Canada. I have been struck by the polite nature of the people and how clean the country is compared to a place like New York. I dream of visiting the Hockey Hall of Fame someday.
That would be an interesting project for a researcher, how employment of people with disabilities varies in accordance with laws (both national and state/province).
I have seen more photos of Debbie Purdy than of Daniel James--who's not depicted in a wheelchair in the two photos I can find. And I believe those may be pre-injury photographs. I think people are more okay with MS or pariplegia than with quadriplegia. People like to use the image of the wheelchair as an icon of tragedy, but at the same time there seems to be a "too disabled" in the media. I think very often PWDs are not treated for depression/suicidal tendencies as they would be in other life-changing circumstances.
Frida, Yes, a wheelchair is an icon for disability and tragedy. A connection that is wrong and demeaning. Much more than a simple visual is involved when portraying people like Debbie Purdy when the assisted suicide debate is discussed.
Yes, Frida, precisely!! How can you possibly justify "assisting" someone in suicide if they haven't had time...or counseling...to get their heads around it? I was shocked to read that Mr. James was "assisted" in this way within a year of his change of status. Appalling! Obviously, the parents couldn't see a way out of it either, or they would have fought to give him a life rather than take it away from him. How many others would be so misguided, for lack of education and awareness? I suspect my parents would have been just like that guy's. How sad.
Claire, You ask the important and hard question: how many others exist like Daniel James' parents? In my estimation far too many. The consequences are now deadly in Britain. It is not just people with a spinal cord injury at risk but the elderly, terminally ill, clinically depressed, and those with a host of disabling conditions. The future in Britain looks bleak.
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