For about a week now, activists and advocates have been engaging in the fight to safeguard the health and safety of Amanda Baggs, one woman dealing with medical ignorance, apparent bigotry, and regular messages that her life isn’t one worth saving. Even now, a positive outcome isn’t assured. (I direct blog readers to just peruse the last week’s worth of blog posts for the full story if you haven’t read it yet.)
All this has been happening in a hospital in the state of Vermont, which is on the cusp of passing landmark legislation in the state – and that’s played out as a kind of “elephant in the living room” as we (including me) have written about Amanda Baggs’ struggle without mentioning the broader context of the push to legalize assisted suicide in her state.
Rachel Cohen-Rottenberg, who writes regularly on her blog “Disability and Representation,” decided to point out the behemoth that no one’s been talking about in “Amanda Baggs, The Pressure To Die, and the Case Against Assisted Suicide“. Here’s the intro:
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.
As I said, this is just the intro, Rachel has written a lot more in this post about what the fight for Amanda Baggs’ safety has to say about what is happening to other disabled people in the state – people who don’t have the large network of activists, advocates and bloggers that Amanda Baggs has. What does the “right to die” mean in a system where many medical people seem to believe that death is preferable to some forms of disability?
Please go to Rachel’s Disability and Representation blog to read the rest of her insights on this latest rescue (we hope) of one of our community.
I’ll try to add my own thoughts within the next few days, after I’ve had a chance to digest what she’s written.
There are some advocates online who I think would like to be engaged in broader action for promoting a better understanding of, and attitudes toward people with disabilities among medical personnel in general, not just in Amanda’s case in particular. But a sense of direction and concrete guidance for construction action might be helpful. There has been a little bit of Facebook discussion here, involving one Mom in Vermont who has been hesitant to bring her disabled daughter to the same hospital in the future if she should need treatment because of this recent situation with Amanda (she talked with hospital personnel on the phone about it): https://www.facebook.com/pdurbinwestby/posts/241990369277992
Rachel Cohen-Rottenberg’s piece needs “to go viral”…Thank you Stephen. I left a comment under her blog entry. You keep us linked and connected. How many gifted writers are among us!!!! Amanda Baggs, “master teacher” is not alone. There are so m any of us, the severely disabled and the societal impression is that we are “exceptions” and to be erased. (And if we disappeared, it’s the old song line “You only know what you lost when it’s gone” but we ain’t goin’.)