John Kelly is the Director of the recently-formed Second Thoughts, a Massachusetts-based group of disability rights advocates opposing the legalization of assisted suicide.
The essay below refers mainly to an article on Christina Symanski that appeared in the Huffington Post, originally in the sites “Weird News” section. Symanski was a young woman who starved and partially dehydrated herself in a process that took about two months until she finally died. (For whatever reason, the article has been moved from that inappropriate section to the main news section.)
Most of the reactions to Symanski’s decision to starve to death have been predictable – “she was brave to live as long as he did,” “I admire her courage,” etc. Makes me wonder if the commenters think that the vast majority of people with spinal cord injuries are cowards for living instead of killing themselves.
Please read John’s response to the news coverage and reactions to Christina Symanski’s long death. At the end of John’s piece, I’ll share the reactions of other disabled people to her death. From John:
I have a spinal cord injury one level higher than Christina, such that I am dictating this into a microphone, drive my wheelchair with a sip/puff tube, and like her, am completely dependent for all my care. Let’s take some issues in order.
First, suicide is nowhere illegal. No one needs to have the “right” to kill themselves, just like we don’t need “the right” to go outside or jump off a cliff. So please, enough of the “rights” talk. Moreover, it has long since been decided that people can refuse any and all treatment, so don’t worry, medicine does not bend over backwards to keep spinal cord injured people alive!
Second, people are different and as Christina says, view different matters differently. Please check out this blog entry by Christina, where she lists her number one determinant of quality of life as being able to care for one’s own body. I can relate to this feeling, as I also grew up a private and modest person, and when I was first dependent on others for my care, it felt unbearable. Like Christina, I especially had trouble with having other people perform my bowel program. Because of these feelings, it took me a long time to realize that even if I found the idea of bowel care appalling, for many other people, helping someone empty their bowels is no big deal at all — no bigger than cleaning up after a baby or pet. It really is possible to have self-respect while being dependent. But that depends on whether we receive any respect.
Third, can we talk about the social context in which we all live, and our innate need for respect from others? Please notice the assumption of the article, that it is natural that Christina would want to die as someone with a spinal cord injury. I just saw a proposal by some organ transplant doctors that newly injured people with spinal cord injuries should be encouraged to die and allow their organs to be harvested! On the flip side, newly injured people are flooded with messages of pseudo-hope for a cure for spinal cord injury. Christina was done a terrible disservice by being flooded with “hope” that she would be cured within 5-10 years. Unfortunately, self-interested doctors and scientists have been promoting this message (they got to Christopher Reeve early) for 30 years. I remember watching a Nova episode a few months after my injury in 1984, in which a doctor predicted five years for a cure to be developed.
Fourth, how much support did Christina get validating her own experience, with her body and situation. As members of many oppressed groups can relate, it really helps to laugh with another person in our same position over the way we are treated, stared at, discriminated against, etc. Besides the guy imprisoned in a nursing home who was going to starve himself to death, did Christina interact with other disabled people, disabled people who might be able to give her advice and support? So was she ever exposed as a disabled person to all the messages of possibility that are now available? For example, did she know that people with her level of injury were playing international tournaments in a new game called Power Soccer? People with disabilities need a community of people sharing our experience. Being isolated in one’s difference is oppression, pure and simple.
Fifth, like Christina I am also from New Jersey, a state not known for its support of people with disabilities. When my best friend got a spinal cord injury in 1971, there were no options but living at home or living in an institution. That can be a soul-killing choice. Christina lived at home and her mother did a lot of her care. For many 31-year-old, this would be unbearable. New Jersey now does have a PCA program, but I wonder did she got enough hours of care to meet her needs? When states and the federal government constantly underfund support programs, we disabled people get the message that we are not wanted.
Finally, it sounds like Christina was not getting appropriate medical care. Unrelieved pain and autonomic dysreflexia can feel overwhelmingly dangerous and scary, and both can be a challenge to treat. So can diabetes be difficult to manage, but diabetics are not flooded with messages “cure or die” like spinal cord injured people are.
The conclusion to draw from Christina’s tragic suicide is not that we all have the right to kill ourselves, but that people can easily be led to see suicide as the only way out of an oppressive situation.
(Note: This isn’t the first time John has written about the “intense anxiety, even terror” that seems to be the most common response from the public toward incontinence – on the part of someone else or the possibility that they themselves might experience it. His appropriately titled 2002 article “Incontinence” is available here at the Ragged Edge archives.)
The longest story about Christina Symanski and her death was published in the UK. The Daily Mail’s article carried a great deal more information about the interpersonal dynamics that helped to play a part in Symanski’s decision to die. A couple days ago, Symanski’s sister posted a new entry on Symanski’s blog and urged people not to read the Daily Mail story. You can check it out here and judge for yourself.
Most of the reactions to the Mail article are the predictable drek applauding her coming from able-bodied people. There were some exceptions, however. Someone calling himself “Larry, from Mississippi” responded to an able-bodied person who called quadriplegia “worse than death” and “90% dead”:
I broke my neck 26 years ago as a 16 year old, got my GED, went to college, ran a business, and trained boxers for 16 years as a quad. Quadriplegia is a fate worse than death?? You are effectively 90% dead?? Tell those young Golden Gloves and Jr. Olympic champs I coached/mentored that! I know everyone is different, but there is no explaining this to me. I’ve had roomates in rehab and college that were negative about their situations. I despise self pity! I made a decision to get in a hot rod with a drunk driver on December 25, 1985. She made a decision to dive into shollow water, which I had done many times too. Maybe quads and paras should stay in a childrens rehab full of children that never walked and never will as I did. Gave me a whole new perspective on things. Some of these comments blow my mind. If you think killing yourself is brave, you have issues. I truly hope you never get paralyzed if you are weak minded enough to believe this is the way out. I’m done..
Here’s another one, this time from an able-bodied person calling herself “Lady Pauline Maria” from the UK:
This is so sad. RIP. My mother became paralysed from the neck downwards in a freak car accident….she wanted to die and begged for help. I pleaded with her to realise she was more than a physical body. She was highly intelligent, wise and a amazing Lady who gave so much encouragement to everyone. Years of arguments, tears and slowly, she realised life beyond a wheelchair. She was loved and respected by so many people – an inspirational Lady of courage. She defied doctors and travelled to USA by plane. She needed nurses and help; even help to cough. She became the consultant to expert consultants. I admit encouraging her to realise a spiritual purpose and she did. My best friend and a truly courageous inspiration..It hurts my heart to read of people who give up when not understanding, we who love our loved ones are blessed with their living. This year is the paralympics – paralyzed people who defy physical limitations. Keep the happy memories and live to love. Life is very precious.
There are no doubt more like these these to be found for someone more willing than I to dig through the more than 200 mostly nauseating and depressing garbage consisting of applause and pitying pseudo-sentimentality.
Finally, Bill Peace has managed to struggle through his own disgust and write down his own reactions on his Bad Cripple blog. Here is the first paragraph of his blog entry titled “The Mainstream Media Discovers Christina Symanski: Perspective Please“:
American society loves people with a disability that want to die. These people are heros. These people are lauded as brave. Their stories are gut wrenching. Their writing is powerful. The latest such person with a disability that is being belatedly embraced is Christina Symanski who I have already written about. Symanski died last December but few noticed her death outside of her immediate family and those in the disability community that read her blog Life Paralyzed. I was deeply touched by her writing and disturbed by her death. I have tried to give a balanced perspective on the social significance of her death. This is exactly what you will not find in the news stories that I have read over the last few days. The first newspaper to write about Symanski was the New Jersey Star Ledger. This story was picked up by the UK’s Daily Mail and then the Huffington Post. I expect the news of Symanski’s death will go viral over the weekend and be picked up by hundreds of news outlets. I have no doubt she will be lauded for choosing to die. Proponents of assisted suicide legislation will bemoan her heroic suffering–Symanski slowly dehydrated and starved herself to death over a period of two months. Comments from readers on line are predictable–if we can euthanize our pets with dignity why did Symanski have to suffer a horribly painful death. The news stories are maudlin in the extreme and devoid of any serious discussion. For example, the story in the local NJ paper adds details such as Symanski’s last meal. The Huffington Post notes as an artist Symanski had decided she had suffered enough–the assumption being artists need to suffer to produce great art. The Daily Mail went into great detail about how Symanski was paralyzed and saved by her boyfriend who she was about to move in with.
And, of course, he has much more to say. Read the rest of it here. –Stephen Drake
I had to go to the Daily Mail story, to make sure it was the same story which I read on the website when it was posted as top story, left margin on home page. I kept saying to myself, could there be more than one?
Buried in the story, (my sense of humor leaves it in after I realized what I’d typed), was that her “step-mother and father made her feel guilty for her accident” and the results. It was quietly forgotten in the rest of the story and the comments.
I had a very close pal, another artist who is disabled, who I have mentioned here before. My friend was a tv salesman, artist on the side, when he fell asleep at the wheel, without his seat belt on and crashed, becoming instant incomplete quadriplegic: that is, he could move one arm. He moved back to his parents home in OK. I met him, via the art group I started, 8 years after his accident. He told me he’d been very depressed in the beginning because hospital staff said to him, “Why should we bother to help you? You caused your disability by not wearing a seat belt.” He kept a loaded gun within reach in the headboard of his bed, contemplating suicide. He remembered he loved art and got back into it. His work is magnificent, pointillism (dots), Western themes and architecture locally. We spoke on phone as I could. He had similar sense of humor, altho a male chauvinist.
His family was wonderful. His parents died. His lover did caregiving for awhile. He did not
qualify for local services. He died after 27 years from Mercer Staph infection in a regional hospital, 3 weeks after going in for treatment for bed sores (from sitting in his wheelchair in his greenhouse). He is gone about 4 years. And, one lifelong friend stayed friends and visited annually from a distant state, but all his other friends vanished. My friends all disappeared when I got severe ME/CFS.
i am christina’s aunt and i just wanted to write that i’m sick of reading comments from whoever about what she chose to do. If you have a similar injury and are feeling good about yourself and your life then that’s great. she wasn’t. if you are not disabled you need to definitely keep your comments to yourself.
Both John Kelly and Bill Peace are disabled individuals with spinal cord injuries. What they are both pointing out – among other things – is that many people don’t feel their lives are worth living. It’s only when that person has a disability – like Christine’s – that society, family, and medicine seem OK with facilitating their self-obliteration.
Christina was in daily pain and misery from her AD symptoms and her nerve damage. Her physical autonomy and personal privacy was stripped away. She was tortured by her lost love, and the life they could no longer have together. Her mental and physical anguish turned her reality into a nightmare. If you are content to live with the problems that you have, it doesnt mean that everyone should or even could feel the same way about their problems. Christina didnt see this as a life worth living, meticulously catalogued why her quality of life was not worth living for, and nobody earth should attempt to judge her choice.
Rey – people, especially hospice professionals and other professionals who encouraged and guided her through this process of dying through starvation and dehydration – *did* make a judgment about her choice. There are lots of despairing people in the world with the problems that you list (minus the physical disability), but – so far, anyway – assisted suicide groups and hospice don’t jump in to “help” them kill themselves through starvation and dehydration.
She made a considered, reasoned and by her logic, rational choice to end what to her was an intolerable life. I think we are all entitled to make this decision, disabled or not.
It is still a gut-wrenching story.
Everyone who wants to end their life sees their life as intolerable, regardless of their age or health status. So, if we’re all entitled to make that decision, I guess you mean that everyone – absolutely everyone – who is serious about wanting to die is entitled to the support and help of palliative care professionals to do it quietly and mostly painlessly. Of course, if you only meant we should give this kind of “help” to people who are “suffering” if they’re old ill or disabled, it’s not really about respect, is it?
Given that it took Christina two months to die, I think it unlikely that anyone ‘jumped in’ to help her.
I just recently came across Christina’s story online and read her book. I wish that she had found more reasons for living but it was her decision. It is also so unfortunate that her father and stepmother treated her so badly instead of giving her the intense family support that she needed.
It sounds as if she was not given all of the medical treatments she required. Obviously when you are not a celebrity like Christopher Reeve(and don’t get me wrong- I loved him and felt so bad about his accident) you are not going to have companies donate medical equipment to you, etc.
Aside from the care of basic needs,paralysis is terrible although some people(including jill Kinmont Boothe,Joni Earackson Tada., Steven McDonald) have lived full lives. Again, the choice was still hers but I wish she had let Jimmy make the decision himself.
The majority of people with high-level spinal cord injuries do go on with their lives, and almost none of them are rich. Nevertheless, most find a level of satisfaction in their lives – probably most linked to degree of family support and acceptance, feeling of control, being able to get out of the house – and being in their own home.
I respect Christina Symanski’s decision. At the end of the day, it’s not our business. Did you or anyone from your organization offer help, Stephen? Or do you just preach?
We found about Symanski’s death after the fact. When someone contacts us when there’s something that can be done, we try to reach out – or have others reach out – privately (no publicity) to see if there are resources or other issues that local activists and advocates can help with. That’s somewhat more helpful than the online cheerleaders and labeling the decision to die “courageous.”
Good for you. I am disabled, with an incurable progressive disease, and I will keep that in mind as I consider my future options,