On August 19, an 88-year-old Oakland man named William Roberts killed his 57-year-old quadriplegic daughter Marion Roberts and then turned the gun on himself. Information about the case has been sparse, but it’s clear that Mr. Roberts was terminally ill with liver cancer and lung disease, and that he had cared for his daughter for over 25 years — first with his wife and then with his son. His daughter had become quadriplegic and had sustained traumatic brain injury from a fall in 1987. She needed assistance with all of the basic tasks of life, and it appears that she received that assistance with a great deal of love.
So what would drive a man to commit such an act at the end of his life?
I think about these kinds of issues a great deal. When a healthy parent, in the prime of life, kills a disabled child, my immediate response is to condemn the perpetrator. I do not want to hear about a lack of services, or about the perpetrator’s fear and hardships. No. You bring a child into the world and you are responsible for protecting the life of that child. That is my immediate response.
So I was surprised, as I read the story of William Roberts and Marion Roberts, that my response was not nearly so visceral. The gating issue, for me, was Mr. Robert’s terminal illness. His impending death seems to have been the motivator here, not his daughter’s disability. I see no evidence that he killed her because he wanted a “normal” life, or because he resented having a disabled daughter, or because he thought life had done him wrong. After all, he had cared for her for 25 years — into his 60s, 70s, and 80s.
I don’t know the man or the family, but it is possible that William Roberts killed his daughter because he was dying and he was terrified of leaving her in the hands of strangers. This is a fear that afflicts a great many parents of severely disabled children. And he had good reason to be terrified. His daughter was likely headed straight for substandard care in the disability gulag. Marion’s brother Thomas helped with her care, but it appears that the bulk of the caregiving fell on the father and that he was frightened about his increasing inability to care for her. Who knows whether anyone had stepped up to reassure him that they would be there after he died? Or whether he could trust those assurances even if they had come?
I’m beginning to realize the necessity of separating the responses to these stories — which inevitably follow the tired and bigoted logic of “disabled people are suffering and the parent/caregivers are putting them out of their misery” — from what might have been going on for the people involved. I don’t think that William Roberts killed his daughter because he thought she was suffering in the here and now. In fact, there is no evidence that she was suffering in the here and now, and there is no evidence that he thought she was. I think it’s possible that he killed her to prevent her from suffering abuse, neglect, loneliness, and indignity at the hands of uncaring strangers after he died.
The man was faced with an impossible choice on his daughter’s behalf: What is better? Death or hell? That someone who spent his elder years caring for his daughter would ultimately take her life (and his own) says far more about the world we live in than it says about him. I feel for this man in a way that I don’t usually feel for people who commit these murders. There was no good ethical choice here because the world didn’t leave him with one.
Is murdering your child an ethical choice? No. I can’t see how that’s arguable, ever.
Is leaving your adult child to be warehoused in hell an ethical choice? No. I can’t see how that’s arguable, ever.
The absolute lack of an ethical choice is not on William Roberts. It’s on the world.
To me, this is very different from a healthy person in the prime of life who kills a child and ends up being excused because they couldn’t get proper support services. Bullshit to that. Not getting proper support services while you’re in the prime of life is a very different thing from being tortured by what will happen after your death when your death is clearly around the corner. This man spent 25 years caring for his daughter and, by all accounts, did an outstanding job. His worry was not about a lack of support services when he was still alive. He could make up for that lack. But after he was dead — what then?
As I age, my greatest fear is to fall into the hands of strangers for my care. I do not fear pain, or further disability, or even death as much as I fear entering the medical system on my own. It is my worst nightmare. I think that it was likely William Roberts’ worst nightmare for his daughter.
Do I condone what William Roberts did? No. I don’t. A murder-suicide is ghastly. I don’t consider it a noble act.
Do I condone the unconscionable choice the world gave William Roberts? No. I don’t. I grieve for a world in which death or abandonment into hell are the choices people are given.
If my condemnation is going to fall, I’m going to let it fall on a world that creates these unconscionable choices.
© 2013 by Rachel Cohen-Rottenberg
There are many good things to say about Andrea Smith’s piece The Problem with “Privilege.” She is absolutely right that to effect systemic change, we must get past the point of self-reflection on privilege, confessions of privilege, and ranking of privilege. She is right that we have to start working to dismantle privilege in all of the spaces we create and in all of the systems in which we are complicit.
But I have a serious problem with an otherwise excellent intersectional analysis: It mentions disability precisely once.
I begin articles like this one with great hope that disability will be integrated into the analysis — only to find, with great disappointment, that disability seems to merit a mere mention (if that). It’s a depressingly recurrent pattern. It often leaves me wondering whether to engage the author’s other arguments, or to simply leave the discussion, secure in the knowledge that, once again, I have not really been invited in.
One of the early warning signs of trouble ahead is Smith’s listing of oppressions under the “gender/race/sexuality/class/etc.” heading (Smith 2013). I cannot exaggerate how much I detest listing oppressions in this way. My friends and I are not an “etc.” My friends and I are disabled. When Smith does not explicitly incorporate this category into an analysis of the colonized subject, she has just done the very same thing that she is arguing against: constituting herself against an imagined Other.
The subject of which she speaks is not disabled. Like the White subject who has to be “educated” about race, the subjects of Smith’s piece have to “educate ourselves on issues in which our politics and praxis were particularly problematic: disability, anti-Black racism, settler colonialism, Zionism and anti-Arab racism, transphobia, and many others” (Smith 2013). But to whom does the word “ourselves” refer? Who is inside that group? Who is outside? By implication, most of the people on the outside are the ones consigned to a handy category called “etc.” about whom we have to “educate ourselves.”
Despite the us/them division thus evoked, we folks in the “etc.” category are already here, hidden in plain sight.
Please start talking about us as though we are you. Because we are.
Please start talking about us as though we have struggled for generations inside of our own civil rights movements. Because we have.
Please start talking about us as though our oppression winds its way through every other oppression under which people labor. Because it does.
And please start talking about us as though we merit the same attention as any other group of dehumanized, Othered folk. Because we do.
Smith, Andrea. “The Problem with “Privilege.” Andrea 366. August 14, 2013. Accessed August 29, 2013. http://andrea366.wordpress.com/2013/08/14/the-problem-with-privilege-by-andrea-smith/.
© 2013 by Rachel Cohen-Rottenberg
For my crip body with its aching hips
the unexpected pain
that radiates into belly and legs and spine
the signals that suddenly don’t reach knees
For this body, I offer praise upon praise.
For the exhaustion of ears that cannot filter
one sound from another
words of laughter, anger, boredom, joy
fragments of everyday stories
talk about children and weather and
racism and baseball
all equally embraced and resisted
by a mind that doesn’t know
what background noise
For this body, I sing halleluyah.
For watching your speech form words in my head
for reading the words in an endless stream
for inscribing my words on the parchment of my mind
for forming painstaking speech out of just the right ones
just as you’ve started talking about something else
For this body, I give thanks.
For the tenacity of thought
that hikes through canyons and across
searching for something new in the
at 3 o’clock in the morning when
all I want to do is, please God, let me sleep
For this body,
I pour out my love.
For the days that I cannot find words
for the days that the colors won’t translate
for the days that the verbal torrents come
and my words somersault and backflip
and wind in circles around themselves
For the days I long to talk like you
like you, whose thoughts become speech
like arrows that never fail to find their mark,
effortlessly, it seems,
while you are doing ten other things
as though it were nothing
as though it were the easiest thing ever
Before this body, my body, I stand in awe.
Does it surprise you
that I praise this body?
Does it surprise you that I love it so?
I will not hate this body my mother gave me
this body that that caresses, that comforts, that reassures,
that sustains other bodies
that bore exquisite life.
Why should I cast it out of the circle of love?
My body fights, it curses, it cries
it pours out words of outrage and grief and hope.
Why should I not hold it close?
The one you call broken
The one I have always known.
© 2013 by Rachel Cohen-Rottenberg
So this morning, I was riding the Santa Cruz Metro bus to Live Oak when a woman tried to get on without paying the full fare. She told the bus driver she had only 50 cents. He told her she couldn’t board. She told him that she had to go and get her check. He told her she couldn’t board. She offered to pay double the fare tomorrow. He told her she couldn’t board.
I felt so badly for the woman that I offered to pay her fare. Of course, she was pleased – perhaps a little too pleased. She immediately ran over to me and said, “Thank you, thank you, thank you!” and hugged and kissed me. I could smell the alcohol on her breath.
After she paid her fare, she sat next to me in the accessible section and hugged me again. And again. And again.
I have a very difficult time talking to people when they’re drunk – unless of course I’m drunk, which I wasn’t, because it was 11:30 in the morning and, besides, I don’t drink. But the woman was really very sweet, and we had a pleasant conversation, which was punctuated by many pats on my knee and a few more hugs. And then, because she was curious and had very little verbal self-control, she asked why I use a cane.
I was in a generous mood, so I told her. To my surprise, she did not respond by telling me how I could cure my hip with prayer, yoga, or herbal remedies. Instead, she lifted up her shirt and showed me – oh my God — a partially healed knife wound in her abdomen.
I didn’t have time to feel cranky about the fact that she’d only asked me about my hip so that she could show me her wound. I was too busy listening to the story she told about how she’d gotten it. The story didn’t make a lot of sense, but from what I could piece together, she had been tutoring a woman’s son, and the woman came in and got angry and stabbed her. Somehow, in addition to the knife wound, she also sustained a back injury and ended up with two titanium plates holding her spine together.
On a normal day, I’m tongue-tied with drunk talkative people, but this story put me way into the zone of I have no idea what to say and never will. So I attached myself to the one point of commonality I could find.
I said, I have a titanium plate, too — in my neck! I have no idea why. I just needed to say something. Anything – other than, Oh my God oh my God oh my God.
She high-fived me, and my stop came up soon after. She hugged me again and promised to pay my fare next time.
Life is nothing if not interesting.
© 2013 by Rachel Cohen-Rottenberg
(April 26, 2013, Albatross University) — In a dramatic new breakthrough, researchers have concluded that autism is caused by being alive.
“This is a great day for medical science,” said Dr. Ernest Eagerly, Director of the Department for the Medicalization of Humanity at Albatross University. “Our research team sorted through a myriad of studies linking autism to everything from pet shampoo to freeway traffic to creases in the placenta. After controlling for variables in the research such as usefulness, rationality, shameless self-promotion, and general hysterical posturing, we determined that all of the studies had one thing in common: people with autism are alive.”
But that’s not all, according to Dr. Eagerly. “Not only are people with autism alive, but their parents are also alive — a clear and dramatic indicator of an underlying genetic mechanism. This new understanding opens up exciting avenues for treatment and cure. If we can locate the gene that controls for being alive, we might just crack the autism puzzle once and for all.”
Autism is a neurodevelopmental disorder that has stolen the souls of 1 out of 88 adorable children who otherwise look completely human. There is no cure.
While the latest research findings are dramatic, experts caution the general public that it’s important to be circumspect. “Being alive takes many forms and one has to be on guard against them at all times,” said Jenny McWhatsHerName, spokesperson for Only My Generation! (OMG!), an organization dedicated to the proposition that an epidemic of aliveness began with the development of vaccines. “Aliveness is not just a simple question of breathing,” she said with a giggle. “I mean, duh! You can’t simply hold your breath until you pass out and think that you’re going to be able to beat this autism thing! Laughing, loving, feeling at ease with your life — these are all warning signs.”
What’s the bottom line, according to OMG!? “Be afraid,” she said. “Be very afraid.”
Dr. Eagerly agrees. “We have found that the best defense against a diagnosis of autism is to sit completely skill and live in abject fear. I know it seems extreme,” he added, “but what’s the alternative? Enjoying your life? That will only result in hordes of people with autism being released upon an innocent and unsuspecting public.”
Because the only known remedy for being alive is dying, researchers stress that a cure may not be in the offing for several years. “It’s a tricky situation,” said Dr. Eagerly. “How do we separate autism from being alive, when the two are so closely linked?” He lauds the efforts of organizations like “OMG!” that suck the will to live right out of autistic people and their families.
“These organizations are on the cutting edge,” he said. “Just keep sending them your money.”
© 2013 by Rachel Cohen-Rottenberg
Yes, I’m sick of autism.
No, I’m not sick of Autism the Condition. That I can live with, although it’s a complete pain in the ass sometimes. But what isn’t?
So that’s not what I mean. I’m talking about everything that isn’t actually the condition:
Autism The Event.
Autism the Tragedy.
Autism the Gift.
Autism The Epidemic.
Autism the Blessing.
Autism the Puzzle.
Autism the Next Step in Human Evolution.
Autism the Reason to Pound People Over the Head Because My Life Sucks Worse Than Yours.
When it comes down to it, what am I really sick of? I’ll tell you: I’m sick of autism The Condition That Must Be Interpreted.
Do we really need one more study about what causes autism? Do we really need one more article about how people with autism rock your socks off? Can we stop with the inspirational memes about autistic geniuses Who Overcame The Odds And Beat Autism Into The Ground? Can we call a moratorium on posts about how autism is an Epidemic of Tragic Proportions Never Before Seen By Human Beings? Can we please, please, please stop talking about autism as though it’s actually a thing that stands alone from actual people?
I know I’m old and jaded. Well, no, not really. Yes, I’m old. But I’m not jaded. I’m the opposite of jaded. I long for the time before autism was A Thing. I grew up before autism was A Thing. I grew up just being, you know, a kid. Just a kid. A kid with lots of what are now politely called issues, most of them unarticulated, but just a kid. I played baseball. I climbed trees. I stayed up till all hours. I read lots of books. I was quiet. I was kind. I had lots of plans for the future.
It would have been good to have articulated my issues. Seriously. I wish someone had helped with that. I wish someone had taught me how to take care of the body and mind that I had been given, rather than the body and mind that everybody thought I’d been given. I wish someone had given me a language for the particulars of how my mind and body work so that I wouldn’t spend the next 50 years of my life driving myself into the ground.
Really. I do wish for all that.
But I am so, so glad that autism wasn’t A Thing then. So glad. Because now it’s A Thing — A Thing that shadows me wherever I go. A Thing that I have to decide to disclose or not. A Thing that’s like a big box that I’m supposed get in and stay in and say This is Me. I often wonder who made that box, and I often wonder why they made that box, and I often wonder why people spend so much damned time talking about that box, worrying about that box, describing that box, and making money off that box — and spend so little time listening to and providing support to the people they’ve put in that box.
And sometimes, I wonder how the hell I even got in that box at all. I don’t recall that box even being there for the first five decades of my life. Did it just grow up around me and enclose me? Or did I jump into it, not realizing how hard it would be to get out — not realizing how hard it would be to say, in a world of boxes, that boxes feel suffocating?
My therapist in Brattleboro used to say that all labels are a box. Labels can be useful — for services, for finding kindred spirits, for getting support. But when it comes down to it, the support really needs to be about very particular things, not about the box, because all of us have very particular needs. None of us look like what’s advertised on the outside of the box — not completely. For me, the main disability is auditory. For someone else, it’s tactile. For someone else, it’s multi-sensory. For someone else, it’s a whole other constellation. You can’t put all that on a box, no matter how big it is. The label will always be a vast oversimplification.
I’d like to get out of the box now.
I’d like to just be Rachel again.
Just Rachel. Rachel who needs quiet in order to hear. Rachel who needs clarity in communication. Rachel who sees word pictures in her mind. Rachel who loves organizing, and who has a passion for so many things, and who can focus like a laser beam on any of them. Rachel who never stops thinking. Rachel whose heart is broken by the world on a regular basis. Rachel who fiercely hopes for better.
That Rachel. The one I’ve always been. The one outside the box.
© 2013 by Rachel Cohen-Rottenberg
I just found this graphic on a Facebook page called Moving The Sun To Shine in Dark Places:
[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