her decision

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{image is a photo of Brittany Maynard with her family a week and a half before she ended her life}

Brittany Maynard died this weekend. Her death, at 29, was tragic and heartbreaking. She made a choice that I believe that she had a right to make – to die when she felt the time was right, on her own terms. I wish her family and those who loved her my deepest sympathy for what I am sure feels like an unbearable loss.

Brittany was a vocal proponent of what she called death with dignity. She and her husband uprooted their lives to ensure that she would have access to the tools that she needed to legally and comfortably end her life when the time came. She gained a lot of publicity along the way and in so doing, became a willing poster child for the cause.

I believe that she had the right to die as per her choice.

I am terrified of the broader implications of her campaign.

My friend Amy Sequenzia wrote the following on her Facebook page yesterday, providing a perfect summary of my fear.*

A lot of posts about assisted suicide today. This is what I think:

There are groups advocating for this and their language is already a problem. They use “not able to,” “quality of life,” “dignity” – words that are used against me, or words people use to define me and my life.

A doctor once wrote on my chart that I did not have human dignity. I hear almost every day that I don’t have a good quality of life. I am “not able to” a lot of things. This language, and the language in the laws, can make living disabled a very scary thing, not scary about the disability, but scary of the perception that can move people away from valuing us as humans.

I am in favor of doing all possible to control pain, I am in favor of living wills. I am not in favor of what, and how, these groups are framing the conversation (if you keep fighting to live you will be so disabled and miserable) and I am not in favor of people advertising such decisions so publicly.

I want to know:

What does quality of life mean and who defines it in a way that can become the standard of law?

What is dignity?

Because, for all I’ve read so far, I would be someone who would “qualify” wish to be dead.

This is what I fear. I fear decisions being made not only for those who (we believe) are unable to make them for themselves but for those who lack only the capacity to express the decisions they do make (or would make if anyone deigned to ask). And I fear that they are too often one in the same.

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{image is an undated photo of Nancy Fitzmaurice}

Last week, Nancy Fitzmaurice was starved to death. Her mother, Charlotte Fitzmaurice Wise won her petition to the High Court to end her daughter’s life. Nancy had been born blind with hydrocephalus, meningitis and septicaemia. She could not walk, talk, eat or drink without assistance. Her mother argued that she was “no longer [her] daughter,” but merely “a shell.”

The case set a horrifying precedent. According to news.au, this was the first time that a child breathing on her own, not on life support and not suffering a terminal illness was allowed to die in the UK. To put that another way, the court allowed one human being to kill another because someone other than the human being in question decided that their life was too hard, too painful, too low-quality to sustain.

How can we possibly make those decisions for another human being? And how can we expect anyone to make truly educated decisions for themselves when the rhetoric that we employ around the debate is, as Amy shows us, so insidiously ableist, so devaluing of lives that are lived outside the realm of those with which we are familiar? We can’t. And that breaks my heart.

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{image is a photo of Paul Corby, who has been denied a heart transplant because he is autistic. Click on the photo to read his story. Click HERE to sign a letter petitioning UPenn to reconsider their decision.}

Disabled people are routinely and summarily denied life-saving medical treatment thanks to the inherent discrimination in our medical system. That situation is desperate enough and one we’re trying to fight. But for the love of God, now we’re going to proactively end lives in which we just don’t see the potential for recovery, for pain management, for someone else’s subjective idea of “quality”?

I just .. can’t.

Brittany Maynard made a choice that I believe that she had the right to make. I wish that she’d made it knowing that a beautiful, meaningful, soulful life is not the sole domain of those whose lists of “able to”s is longer than their lists of “not able to”s. I wish that our society would stop teaching us that dignity is dependent upon our ability to … well, anything. I wish that she could have believed instead that dignity and humanity, throughout the life cycle and through the process of its end, are inexorably intertwined.

But I am not Brittany and I can’t possibly pretend to know what I would choose if faced with the same horrific choice. Whether or not I would do as she did, I defend her decision as I believe that it was hers to make.

And I pray with everything I have that it, and all the publicity surrounding it, doesn’t lead to any of us feeling justified in making those decisions for each other.

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{image is a photo of Brooke tossing pebbles into the water as the sun sets over the shore}

Connerton Photography, all rights reserved

 * Shared with Amy’s generous permission

19 thoughts on “her decision

  1. I want to encourage you to be an advocate for appropriate language for when these laws are written! Start petitions, contact lawmakers, etc.
    In my line of work, as an Occupational Therapist working in rehab and long term care, I see people daily who are on full life support, with tubes coming out of every orifice. They don’t respond in any way to people who speak to them, touch them, or spend time with them. They exist solely in a bed, sometimes without even having family members come to visit. How can that be a life of quality? I can’t claim to know. I recently read an article stating that MRI or CT could be used to determine brain function in people who don’t respond to outside stimuli. We have a much better understanding of brain-death, which should be useful in this matter. But this is different. Someone who is on long term life support and non-responsive can’t tell us what they would choose, but a person with a terminal illness or with a physical, mental, or intellectual disability probably can. There’s a lot of research that needs to be done, along with the clarification of language, and spreading better understanding of disability. As I said before, be an advocate, for yourself and others.

  2. Thank you for this, for once again putting my fears into words in such a graceful way. Everything about this terrifies me. Beautifully written as always. xoxo

  3. You’ve captured the essence of the dilemma. Where do we draw the line. Unfortunately once the precedence is set there’s always a group or someone wanting to move the line just a little further. Some things should remain in Gods time not man’s. No one should be able to make that decision for another human being unless that person is on true life support.

  4. Thank you so much for writing this. It is so hard to suggest, when you hear Brittany Maynard, that what she wanted shouldn’t be the rule for everyone. But it is soooo much more complicated than that and, like you say, there are so many other current examples of how absolutely terrifying these laws can be. I really hope this post makes people think about this issue.

  5. As a mother of a child who is about to be evaluated for autism, this hits home. And then reading the petition for Paul (the link you shared) scared me even more. My son has outbursts regularly and to think he could be arrested and thrown in a psych ward because of his autism is terrifying. The population needs to be educated. Language needs to be correct and understood. Be an advocate. I plan on being one for my boy. Thank you for putting into words what I couldn’t.

  6. I admit to straddling the fence on this one. One side says YES you have the right to choose to die should you be in pain. The other side says NO you cannot tell me that I have the decision to end my child’s life based on society’s view of what their “quality” of life is. I despise that both questions are intertwined, yet they must be. There cannot be a single discussion on this subject at “right to die” becomes more public and therefore more legislated. Thank you for providing a balanced view on this very important subject.

  7. This is what I wrote elsewhere on the topic:

    I have mixed feelings. Currently in the medical community there are very real problems with doctors and other medical practitioners taking it upon themselves to decide that a disabled person’s life must not be worth living, and acting accordingly. This can mean anything from counseling against a disabled person receiving life-saving procedures to deliberately choosing to enact a treatment for an illness so slowly as to be useless.

    It is a very real and very serious problem.

    On the flip side, I totally agree with people having the right to take charge of their death, and I don’t think we should prolong life at all costs. If a person with a terminal illness decides that they want to end their life at their terms, at their time, I’m all for it.

    So I think for me the big thing is that doctors should never, EVER be allowed to bring it up or hint at it or suggest it or anything. It needs to be entirely in the hands of the individual, and no one else should ever have any power to decide for them if their life is worth living or not.

  8. I think we have to separate Brittany Maynard, and specifically the Oregon death with dignity law and its use from the potential expansions and creep into other gray areas. The difficulty of drawing a line does not mean that Brittany Maynard (and others like her) should not have been able to make the choice she did, but that we should advocate to prevent the line from being drawn in a way that encroaches on the liberties of others.

    The statistics on the Oregon law does not suggest that Oregon is on a slippery slope to devaluing the lives of those not deemed perfect and healthy. The option, for physician assisted suicide, is only available to the terminally ill, and further, the terminally ill who are not identifiably depressed or otherwise under psychiatric duress. Oregon physicians deny the request to half or more of those who request assistance. In the 17 years the law has been in effect, about 700 patients have chosen this option. Oregon is not on a slippery slope (though Switzerland and the Netherlands might be — there’s a report of assisted suicide in the Netherlands because a person was fearful of retirement!).

    There are utilitarians who want to use the right to chose end of life care as a first step in a judgment on the utility of individual lives, but we should fight them, not force a young woman to suffer and die in a way she doesn’t want to, when faced with a terminal diagnosis of glioblastoma. Of course, if someone with glioblastoma wants to die without medication that, too, should be their choice.

    • Bj, I still don’t get “death with dignity”.
      The problem is, the organizations advocating for Right to Die laws do use the rhetoric of “disabled lives are misery” to get people afraid. They say that if you have a terminal illness, you don’t want to – lots of examples. The examples are the things that are part of my everyday, part of my life.
      About Oregon, recent study shows that the majority of the people who ask to die do so because they don’t want to burden others. While this is a personal thing, it is the slippery slope since we are said to burden people and often silenced.
      As Jess said, it is also about privilege, and disabled people do not have such privilege.

    • so much agreement with this, bj.

      i live in oregon. i have multiple degenerating conditions that mean, in the fullness of time, i will be making the same choice brittany did, and i’m glad i live in a civilised state where that’s an option.

      i’m also severely disabled by multiple NON-lifethreatening things, including autism and multiple brain injuries. i’m housebound and frequently bedridden. i have trouble speaking and can’t use the phone or skype well, and i’m too ill for visits. many people (possibly most) would say that my quality of life stinks. but *i’m* happy and enjoy life with my partner and my cats. and that’s my choice, too, and it should be.

      i find it incredibly frustrating and offensive to have people who are disabled but who are NOT facing a long drawn out and painful death which they’d prefer to avoid claiming that the law should deny those of us who do OUR CHOICE.

      i just don’t get it. people don’t want an unwanted choice forced on them, so they want to take away choice from others? that sounds suspciously like some anti-choice, anti-quality rhetoric i’ve heard all my life. :/

      me, i prefer we all have the freedom to make our own choices about our own lives AND about our own deaths.

  9. Wow. I cannot believe that these children were treated this way. It breaks my heart. I too am an advocate for choice. It’s something that we’ve inherited and have the right to exercise. I don’t believe that that means we have the right to decide, life or death matters, for those who can’t or are “unable to” decide. That’s breaks my heart. We should and must defend those and build up those who need us to advocate for them. They are so precious. Thanks for your post.

  10. No one has the right to measure “quality of life” for another human being, it is too subjective and where does it all end, do we the start looking at deaf people or someone with one leg shorter than another. You may think my views extreme, but think back to Nazi Germany and remember the atrocity of the holocaust.

    • Sharon, this is not extreme. What happened to Nancy Fitzmaurice is the same that happened in Germany 1938 that gave origin to the Aktion T4 program. A family asked to be allowed to kill the disabled son because he did not have “quality of life”. It is very frightening.

  11. No one has the right to measure “quality of life” for another human being, it is too subjective and where does it all end, do we the start looking at deaf people or someone with one leg shorter than another. You may think my views extreme, but think back to Nazi Germany and remember the atrocity of the holocaust. This comment is a continuation of views I was expressing which was posted before I had finished.

  12. i believe every human has the right to decide upon their death. however, i don’t believe any human has the right to make that decision for any other, unless via a power of attorney, where that is stated to be the patient’s desire if in a particular state of ill health.

    i don’t believe that people who are physically, mentally, or development disabled are somehow less than human, have fewer rights, and i don’t believe others have any right to change how they are treated in the health system. an autistic child/adult, has the same right to be on the heart transplant list as the best gymnast or most brilliant mind.

    being human is not a subjective state. it is the state of all living homo sapiens sapiens. no one gets to make them less than human or withhold care or decide they should die. human is human. only the individual gets to decide if and when and how to end their own life. no one else.

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