Disability and Representation

Changing the Cultural Conversation

Amanda Baggs, the Pressure To Die, and the Case Against Assisted Suicide

Most people in the disability community know Amanda Baggs as a blogger, a disability rights activist, and the creator of the powerful video, In My Language. I first came to know Amanda in all those ways as well. Then she became a friend, and I found her to be one of the most ethical people I have ever known.

I’ve been pondering for days about how to write at length about what is happening to Amanda. Words have been failing me. All I’ve been able to feel is a deep sadness and a deep outrage that nearly take my breath away. But it’s time — not only because Amanda is a friend and a colleague, but also because her situation shows how easily vulnerable people are pressured to die by those who feel their lives are not worth living.

Amanda is autistic. She is also a wheelchair user and has a condition called gastroparesis (GP) — paralyzed stomach. Because of this condition, Amanda has had several bouts of aspiration pneumonia. The treatment for aspiration pneumonia is excruciating, and another bout could kill her. The only way to save her life is the insertion of a G-J tube through which she can both receive nutrients and vent air and bile from her body. Several doctors at the hospital in which Amanda is a patient suggested a G-J tube, and Amanda decided she wanted it. She has been quite clear about her desire to live.

A life-saving procedure to which a patient agrees ought to be the end of the story. But in the case of a woman with multiple disabilities, it hasn’t been. Amanda has had to fight for the insertion of the G-J tube in the midst of illness and exhaustion. In one especially ghastly encounter, she had to argue with a gastroentereologist who kept suggesting “alternatives” — when they both knew that the only alternative was death. In a post called The weirdness of being told that the death alternative is the one I should consider, Amanda writes:

Every doctor since I got here has been talking about feeding tubes. I discussed it with them and chose the g-j tube. In reality I chose it months ago. There’s been talk about feeding tubes since I was diagnosed with gastroparesis last fall and again when the diagnosis was confirmed this winter. This talk isn’t new or scary. I’m more comfortable with the prospect of a feeding tube than anyone else in the room, aside from being a little afraid of the pain early on after the operation.

What became really disturbing was the gastroenterologist’s attitude towards my treatment. He kept trying to find ways to persuade me that I didn’t want a feeding tube. He said I had to consider alternative options. My DPA pointed out that the current alternative option was death from pneumonia. The gastroenterologist confirmed that he knew that was the only current alternative. Then he went back to what a big scary decision a feeding tube was, and other things intended to dissuade me from what’s known both with gastroparesis and other neurological problems causing these problems, to be commonly the next course of action.I simply can’t continue aspirating like this, getting pneumonia this often is a very bad thing. I’ve had a number of close enough calls I’m not interested in getting any closer.

But apparently this guy, even after “the alternative is death” was spelled out, not only agreed to this, but still kept pushing “the alternative”.  And he was not the only person who appeared to know my life was in danger yet kept asking me to reconsider getting the tube, they’ve tried all kinds of ways.

On what possible basis would a doctor discourage a patient from having a life-saving procedure when the patient clearly wants it — and when several other doctors had already suggested it? It makes no rational sense at all. The only way it could possibly make sense is if one started from the premise that Amanda’s life was not worth saving in the first place.

How can a life not be worth saving? Apparently, when it’s a disabled life.

I don’t consider that viewpoint a rational premise on which to base any decision. I think that anyone who believes that a disabled life isn’t worth saving is engaging in bigotry deep and wide, and that kind of bigotry is never rational. It is always based on fear and loathing, no matter how rationally the notion might be presented, and no matter what the educational credentials of the person presenting it.

But, thank God, Amanda’s life is being saved. After a great deal of work by her fierce DPA and numerous outraged phone calls from disability rights activists all over the country, the doctors finally assented to inserting the G-J tube. But the question of the very worth of Amanda’s life remained. After she had signed the consent forms, a pulmonologist asked her not once, but three times, whether she was “at peace” with her decision.

Now, I can understand asking someone whether they’re at peace with a decision to refuse treatment, even though it means death. It’s always a concern that people feel absolutely sure that they want to forego treatment, because death is an irreversible choice. But it makes no rational sense to ask a person who has vehemently expressed a desire to go on living whether she is at peace with the prospect of going on living. And yet, that’s what happened. As Amanda tells it in “Are you at peace with your decision?”:

Before I got my feeding tube. After I’d already signed an informed consent form. A pulmonologist came into my room with a gaggle of interns and residents behind him. People who were learning from him. People who looked up to him as a teacher and role model.He had seen my cat scan. He knew how many times I’ve had pneumonia recently. He knew it would keep happening if we didn’t find a way to stop it. He knew that pneumonia is a deadly disease and that my health was worsening with each infection. He knew how many doctors had tried to talk me out of choosing the feeding tube — choosing to live.

“Are you at peace with your decision?” Is a question I would expect to be asked repeatedly if I’d chosen to avoid treatment and go home and wait to get the infection that would kill me. Not a question that goes with choosing life. He asked me at least three times in a row.

I had a friend who came to visit from out of state, in the room with me at the time. She came because she heard I had pneumonia. Her father died of pneumonia. She was terrified for my life. She witnessed this conversation — easily, as she put it, the most genteel of the ways I’d been pressured to die.

There has been a great deal made lately of the so-called right to die — the right of terminally ill patients to obtain a lethal dose of medication in order to end their lives. Advocates for “death with dignity” believe that they can put enough safeguards in place to ensure that people are able to make a free and autonomous decision, protected from outside pressure at the hands of parties who do not have their best interests at heart.

Under our current system, the very notion of this kind of autonomy is a dangerous myth. There can be no free and autonomous decision to die with dignity when people who want to live with dignity are not encouraged to live — when the very idea that they can live with dignity is not even on the radar of the doctor who walks into the room.

Let’s face it: disabled people represent the failure of the medical profession to live up to the mythology our culture has built around it — that cures are right around the corner, that medical science is all powerful, that life can be made perfect and pain free, and that even death can be put off indefinitely. People with disabilities are an affront to a culture that idolizes the medical profession and assigns it all kinds of power it does not have. The myths by which we live fail abruptly in the presence of a person with disabilities, and doctors are no more immune from the power of those myths than anyone else.

What happens to people who don’t have the support that Amanda has? What happens to people who are sick, and in pain, and alone, and don’t have a fierce advocate? What happens to people who aren’t well known in the disability community? What happens to people who do not realize that they have worth, who do not realize that they have the right the right to live? What happens to people lying in hospital beds, uncared for, feeling that their lives means nothing because of all of the genteel and not-so-genteel ways in which that idea is communicated? How many people feel that they are simply a waste of space because they’re being pressured to choose the alternative of death?

In this kind of environment, no free choice is possible. And I think that the proponents of assisted suicide know that. I really do. In fact, I think that the very reason that people put assisted suicide on the table at all is that they know the kind of treatment in store for them if they become ill or disabled. It’s not really illness or disability they fear, because it’s entirely possible to live a very good life with illness and disability in it. What people fear most is being treated as though they have no dignity, as though they have no worth, as though their lives matter not at all. This is the deepest fear: to not matter. Even pain and death pale in the face of it.

I think that many people feel that they would rather die than to be treated as though they are worthless. And so they put forward legislation that will give them a way out. But they don’t realize that we can fight the idea that it’s better to be dead than ill or disabled — that we can react to it with outrage, and that we can create communities of support so that none of us ends up with our worst fears realized.

We have to. We can’t give up. We can’t give in to the idea that death is better than life. Because what is happening to Amanda Baggs should scare the hell out of all of us, and we need to take that fear and listen to what it’s telling us.

The reaction to fear can’t be surrender. Not when life is at stake.


Baggs, Amanda. “In My Language.” http://www.youtube.com/watch?v=JnylM1hI2jc. January 14, 2007. Accessed April 6, 2013.

youneedacat. “The weirdness of being told that the death alternative is the one I should consider.” http://youneedacat.tumblr.com/post/46816346769/the-weirdness-of-being-told-that-the-death-alternative. March 31, 2013. Accessed April 6, 2013.

youneedacat. “Are you at peace with your decision?” http://youneedacat.tumblr.com/post/47251303580/are-you-at-peace-with-your-decision. April 6, 2013. Accessed April 6, 2013.

© 2013 by Rachel Cohen-Rottenberg


    6 comments already | Leave your own comment

  1. 4/6/2013 | 7:49 pm Permalink

    Let’s not forget… oh… their behavior on her initial admission (which involved a fight), what they did with the operation itself ( http://youneedacat.tumblr.com/post/47096392053/on-the-surgery-itself-and-the-anesthesia-screwups ), or the postoperative “care” (e.g. http://youneedacat.tumblr.com/post/47066004981/so-today-was-interesting, http://youneedacat.tumblr.com/post/47249070590/why-are-so-many-physical-therapists-so-scary ).

    This blog post barely scratches the surface on what’s wrong with Amanda’s treatment.

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    • 4/6/2013 | 8:03 pm Permalink

      Alexander, I’m well aware of the details of what’s happened. The purpose of this post wasn’t to cover everything that’s wrong with Amanda’s treatment. The focus of this post was on the pressure to die and the assisted suicide question. If you’re looking for a post covering all the details, you’re looking in the wrong place. Everything that has happened is so unutterably painful to me that I couldn’t possibly write that post right now. It’s taken just about everything I have today to write this one.

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    • 4/6/2013 | 8:08 pm Permalink

      There is no free choice. There are always cost to be accounted and balanced. The quandary is the scale measuring the cost and whats in the bank.

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  2. 4/6/2013 | 11:01 pm Permalink

    Thank you so much, Rachel. I’ve been meaning to write a post about this, but I may just link to this instead– you’ve said almost exactly what I would. There’s also a wonderful section about this topic in Nancy Mairs’ “Waist High in the World” that I may try to link here when I have more spoons.

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  3. 4/8/2013 | 4:51 pm Permalink

    In fact, I think that the very reason that people put assisted suicide on the table at all is that they know the kind of treatment in store for them if they become ill or disabled. It’s not really illness or disability they fear, because it’s entirely possible to live a very good life with illness and disability in it.

    I think it very rarely profits any exchange of opinions to expound upon the “true motivations” of the opposite part. If you want others to respect your capacity for independent self-determination – regardless of what “impairment” or “disability” they might assign to you – you should accord them the similar courtesy, and assume that their stated motivations are, in fact, genuine.

    I have no difficulty at all imaging a condition where my life – even with the finest, tenderest care and assistance that anyone could wish for, even surrounded by friends and loved ones – would be such continuous agony and tribulation, and any moments of pleasure or meaning so vanishingly few and far between, that I would prefer death and oblivion to continued life.
    As an atheist, I believe that my life is fundamentally my own property to do with as I will – including to end it if I choose to do so, and that it is morally and ethically right to assist another person in doing this if that is their free, informed decision. I believe that mastery over your own life and existence to be a fundamental expression of personal dignity – and that people may be able to face and endure more pain and trials than they could have imagined if they know that option to end it will always remain available to them; rather than feeling they must take this step prematurely to avoid being deprived of the choice later.

    And I will never, ever, so help me God, support any legalization of assisted suicide or euthanasia.

    Because, as RCR writes, there are – or rather were – countless Amandas out there that didn’t have her personal strength and support network, and that had their lives – lives that still had the capacity for meaning, and joy, and hope – cut short by an attitude so callously cynical that it doesn’t even deserve the name of paternalism. With all the people out there who worry about being a “burden” on their family, their friends, or society, we can’t afford to allow even the tiniest shred of a hint that euthanasia is a valid response to these worries or pressures, or that the quality of their lives is to be weighed on a scale against the cost of maintaining that life. The profound injustice done to those patients denied the chance to end a life that has become meaningless to them is the price that must be paid in order to avoid the far greater injustice – and the potentially corrosive effects upon society as a whole – of a system that formalizes, regulates, and thereby, if only implicitly, normalizes a choice that should only ever be made in extremis, and never, ever, as a consequence of outside pressure.

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  4. 4/9/2013 | 4:22 am Permalink

    Rachel Cohen-Rottenberg, thank you. My spirit of my frim Bubbie, Ruchel (Rachel was only used on her citizenship papers and death certificate), hovers- she was my teacher of righteousness.

    Stephen Drake posted an excerpt and link on Not Dead Yet to here. I’m almost afraid to use words after reading so powerful a blog entry as you have done. (I’m too ill, CFS/ME, to do a blog. I use comments, mainly on NDY and a small newsletter, a monthly report, to artists who are disabled in a small support group since April 1985.)

    Other disability/human rights activists have pointedly asked, What other group is urged to kill themselves? Recently, on Stephen Drake’s list of entries on NDY is the story of Iraq War vet Tomas Young, the calling him of a “hero” by Phil Donahue, and the media bandwagon, for promising to do “assisted suicide” in the “next few months” in a hospice (I never before heard of a hospice, which has agreed to allow Young to starve himself, for someone not “terminal”). He is an example of the failure you mention in your piece. The society bemoans the suicides of U.S. Iraq and Afghanistan war vets, yet the severely disabled Young is cheered to death.

    Again, thank you. Some of us sure make beautiful noise.

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