[The graphic shows an eye chart with the text "The only thing worse than being blind is having sight and no vision."]

It’s appropriate in this context to note that I spell out the text on the graphic in order to make the blog accessible to my blind readers. Because yes, indeed, my abundantly well-intentioned friends on the left: Blind people read. They even read blogs. On the Internet!

But I digress.

About your graphic… How can I put this? I’ll try to be as direct as possible: Using the word “blind” as a pejorative is not the way to go when you’re fighting for social justice.

Why? Okay, let me spell it out.

In this context, “blind” is entirely negative — nearly the worst thing that could happen to a person. And the people worse off? The ones who can literally see, but who have no vision for making the world a better place. Thus, blind people are just one tragic step above people who are too cowardly, or too selfish, or too morally bankrupt to care whether the world goes to hell in a handbasket.

You see, you lost me when you attempted to inspire people to moral action by appropriating the experiences of  disabled people and attempting to speak in their voices. You looked at blind people and assumed that blindness is a tragic condition, roughly synonymous with an absence of moral and philosophical vision. And then you used your outsider’s judgment of a situation about which you know nothing to bolster your cause. You fell into one of the worst tropes our society has to offer about disabled people: that disability is a physical and moral tragedy.

May I make a suggestion? When you’re fighting for social justice and general kumbaya, avoid the ableist language. Is that so hard?

© 2013 by Rachel Cohen-Rottenberg

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.

References

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

The news isn’t good. Two major things stand out for me:

1) In the minds of a great many people, children do not seem to exist as whole human beings with interior lives. This is especially the case for mentally ill or otherwise disabled children.

2) Fear is leading the way, and when people are afraid, they become illogical and cannot stay on point.

I think that these two things account for some of the truly illogical backflips I’ve seen people doing in order to rationalize the fact that the mother of an emotionally fragile child thought it was perfectly all right to talk about him in the media in the way that she did, at the precise moment when people were so traumatized that they were highly unlikely to respond with very much rationality or thoughtfulness at all.

When people are running scared, it’s probably not the best time to compare your kid to a school shooter. This fact seems to have been lost on a great many people. In fact, a great many people seem to feel that it was the perfect time.

Here are some of the basic themes that emerged yesterday. I have seen them emerge on a number of other sites. I let through some of the comments that expressed these sentiments and I responded to them directly yesterday. Others, I did not let through, because the content was so disturbing that I had to hold them back until I could speak to them separately and at some length.

1. How dare you criticize this mother?

That was a constant refrain. People said they were appalled. They told me that I was being mean and that I ought to be ashamed of myself.

And the whole time, I’m thinking to myself, “How is criticizing a mother for publicly comparing her minor child to the most hated person in America somehow more appalling than the fact that she publicly compared her minor child to the most hated person in America?” At this point, I’m hearing far more anger directed at people who criticize this choice than at the person who actually made this choice.

2. The public safety is more important than a child’s privacy.

There are people who said that it was perfectly all right to publish a child’s photograph next to the words I Am Adam Lanza’s Mother because, they opined, we need to know who these people are.  Yes. I got comments like that. I imagine that these are the same people who think that a woman wearing a hijab and carrying the Q’uran shouldn’t be allowed on an airplane.

Look, we’re talking about a 13-year-old kid who is seriously acting out inside his own family — a family that has been through a bitter divorce and custody battle. And now, in the national mind, he’s potentially the next school shooter from whom society needs protecting. On what are people basing their image of this young man? A blog post. One blog post. They read it on HuffPo, and now they feel perfectly qualified to make a judgment about someone they’ve never met.

I realize that people are raw and afraid after the shootings last Friday. But how does a mother talking about her kid, someone whom none of us has ever met, make anyone feel safer, hundreds of miles away?

Or would you like every mother of a troubled child to post her child’s picture on the Internet next to a title that reads I Am Adam Lanza’s Mother? How about we put the photographs on milk cartons? I’m sure it would be a great boon to the mental health of these kids. Public shaming always works to calm emotionally dysregulated people right down.

And besides, we’ll have created a whole new subclass of human beings to fear. We’re awfully good at that in America. We generate them like cars off an assembly line. It’s a sign of our abundantly good mental health. So far, we’ve got LGBT people, autistics, black men, people with mental illness, Muslims, genderqueer people, and vaccine manufacturers to fear. Hey, what’s one more?

3. Privacy is just an abstraction.

No, privacy isn’t just an abstraction, nor is the impact of having a mother go on the Internet and talk about how her child might grow up to be a mass murderer an abstraction. The impact is stigmatizing and very likely humiliating.

People are human beings, who have these things called emotions, and it tends to wreak havoc with their emotions when they don’t feel that they have the same right to privacy as putatively “normal” people.

4. It’s too bad she had to potentially compromise the mental health of her child by going public, but it’s important that we have this conversation, and you’re distracting us from it.

If the only way we can have a national conversation about mental health is by saying these things publicly about a 13-year-old child, we need to be looking at our own mental health as a country. We need to figure out why we think that’s healthy, why we rationalize it, and why we think that a child’s reputation and sense of safety are potentially expendable as long as the adults get to have their conversation. And we also need to look at our national ethics and think about why a mother outing a 13-year-old kid barely registers on most people’s moral compasses.

5. The mother was just trying to get help for her child.

This is not a reality show. This is real life. In real life, people don’t just show up and say, “Hey, great blog post. I’m here to fix all your problems.”

What does this say about us as a country, and about our clarity of thought, that we think these kinds of things will work? And why do we conveniently forget that the media, in its shameless opportunism, is exploiting both a national tragedy and the pain of this woman’s family for page views and advertising dollars? This is the same media that, in the past week, has engaged in the following activities:

a) Interviewed children from Sandy Hook Elementary School the day their schoolmates were killed.

b) Incorrectly reported that the shooter’s brother was the murderer, resulting in the shooter’s brother being publicly reviled while he was in a state of shock and grief over the loss of his mother and the actions of his brother.

c) Propagated a false and dangerous equation between Asperger’s and violence — with the result that, in just my small circle of friends, at least two have gotten phone calls from relatives asking whether their little autistic kids are going to grow up to be school shooters. One can only imagine the verbal abuse and bullying of autistic children going on in the schools this week. A number of my adult friends are living in fear.

How does any of that hold the promise of a solution to anyone’s problems? How is that a safe or productive environment in which to publicize your child’s issues?

6. What would you prefer? That the woman suffer in silence?

It’s not a choice between suffering in silence and stigmatizing a child in the national media. If people can’t find any territory between those two extremes, they need to do some serious self-reflection.

7. It’s important to talk about these things openly in order to break the stigma of mental illness.

Yes, it’s important to talk about these things openly in the proper context. The day after one of the worst school shootings in American history is not the day to announce to the world that you think your kid is going to grow up and do the same thing. That does not destigmatize mental illness. Not in any way, shape, or form. When people are reeling in pain, grief, fear, and shock, for a person to publicly announce I think my mentally ill kid could do the same thing someday does not destigmatize anything. It engenders fear of mentally ill people, and the likely result is that mentally ill people will not seek help because they do not want to end up being stigmatized as the next school shooter.

How people could miss the point so spectacularly is really beyond me.

8. You have no idea how people feel in these situations.

Maybe not. Could someone express concern for the child now?

9. The mother was just crying out for help.

Perhaps she was. Could someone express concern for the child now?

10. This isn’t about the child.

Yes, it is. It absolutely is. Could someone express concern for the child now?

Please?

Source

The Huffington Post. “‘I Am Adam Lanza’s Mother’: A Mom’s Perspective On The Mental Illness Conversation In America.” http://www.huffingtonpost.com/2012/12/16/i-am-adam-lanzas-mother-mental-illness-conversation_n_2311009.html. December 16, 2012. Accessed December 16, 2012.

© 2012 by Rachel Cohen-Rottenberg

I’ve always rejected that paradigm, for one simple reason: If people are being killed, or having their limbs blown off, or sustaining traumatic brain injury, or going through any of the other innumerable types of physical and psychological trauma that happen in the midst of war, I couldn’t care less whose side they’re on.

Do you think I weep any less for a Palestinian baby who is killed and for the Palestinian parents who have to bury that child than I do for an Israeli baby who is killed and for the Israeli parents who have to bury that child? I don’t, and I have relatives in Israel with families, and my tie to the Jewish people is very strong. But my membership in the Jewish people doesn’t mean that I bifurcate my conscience and tell myself a story that it’s all right for Israelis to bomb the hell out of Gaza and kill babies because of the sins of Hamas. It also doesn’t mean that I think that the sins of the Israeli government make it perfectly acceptable, or reasonable, or ethical in any way, shape, or form for Hamas to lob rockets across the border where children are going to school, or to blow up buses, or to do anything else whose only purpose is to destroy life and hope.

If you think that violence is the answer to anything, I’m not on your side. And if you think that the sins of one side mean that everyone on that side deserves to have violence done to them, I’m not on your side.

I’m not on your side if you’re the Israeli government and you want to pound the hell out of the Palestinian people, thinking you’ll bomb them into submission. That strategy is doomed to fail. We Jews have been kicked around for thousands of years, and we’re still here. Do you really think that the Palestinians are any different and any less determined to live and thrive in the face of violence?

I’m not on your side if you’re anti-Zionist and you think that Israel has no right to exist. Do you really think that your fantasy of Israel ceasing to be will create the world anew? Do you really want to make Palestinians the sole victims of the despicable history of the past 60 years and counting?  Have you not seen for over 60 years just how brilliantly it works out when people who consider themselves the sole victims of history get a nation state? That strategy will result in a bloodbath. Good luck with your conscience on that.

I’m not on your side if you demonize Israel as a colonizer and the Palestinians as terrorists — not because there isn’t colonizing and terrorizing going on, but because that kind of rhetoric just continues the war-mongering. How is making one side or the other the personification of evil working out for you? Has it reduced the body count? No? Then maybe it’s time to stop.

I’m not on your side if you want Allah to grant a Muslim victory, and I’m not on your side if you want God to grant a Jewish victory. The One Above is not a Palestinian or an Israeli. God does not take sides when people are killing one another’s children. God is weeping over the very idea of granting victory to one side or another. God wants a victory of peace and justice, for everyone.

Whose side am I on? I am on the side of anyone who wants to wake up and realize that talking about who belongs on the land, who God wants to win, who is an oppressor, who is a victim, who is a colonizer, and who is a terrorist isn’t working. Maybe it makes people feel very righteous and in perfect solidarity with whomever they think is more oppressed, but it does nothing whatsoever to solve the problem. It does not address the very basic concern that people on both sides have: To wake up tomorrow morning and not have to bury their children.

If you want to solve the problem, get off one side or the other, and start standing on the side of peace and justice — not just for Jews, and not just for Muslims, but for everyone. That’s the side I’m on.

© 2012 by Rachel Cohen-Rottenberg