“Please Don’t Murder Us” Shouldn’t Be Controversial

If you say that lack of services can lead to parents murdering their disabled children, then every time a parent of a living disabled child complains about lack of services, you have to say they lie, since the children are alive. Or you are a hypocrite. 

If you say that parents who murdered their disabled children “snapped” under the pressures of life, or because of mental illness, you have to tell us where this other world is, the world where my friends who have mental illness and disabled children, yet do not hurt them, despite very stressful everyday events. I though we all lived in the same planet. Or maybe you are full of BS. 

If you say that parents who attempted to murder/murdered their disabled children did so because they wanted the children “in a better place”, tell me how this place looks like, when you visited. Or just shut up.

If you are this parent, I hope prison is your forever home. 

If you feel offended and call it hyperbole when we point out the similarities of today’s courts granting parents of disabled children the right to starve them to death, and the program Aktion T4, then you better build a time machine and go back in time to change history. Or your ableism is very inflated. –(via Amy Sequnzia, Facebook)

This was after two very difficult weeks.

It was when I heard about a girl in the UK who was allowed to be starved to death, after a surgery left her in extreme pain. The mother asked the courts to starve her and withhold fluids. The judge said she was a devoted mother and granted her the right to kill her daughter. Nancy was 12 years old, multiply disabled, and she loved music. What was not explained is why a surgery for kidney stones left Nancy in so much pain, and why she, not being terminal or in life support, did not have the same options for pain management as non-disabled people have.

It took her 14 days to die from dehydration and starvation. She was conscious.

I try to imagine that same mother and her hypothetical non-disabled daughter, who would be in pain after a kidney stone surgery. I imagine her holding the hospital accountable and demanding solutions and top care. Maybe she would have gone to court and the judge would still have called her “devoted”, but not for requesting a “mercy killing”, but for fighting for her (hypothetical non-disabled) daughter to live. As parents should.

Non-disabled lives, people are ready to fight for. Disabled lives receive “mercy killings”.

It was after I heard the verdict of a socialite who murdered her Autistic son. Jude was 10 and I can see his sweet smile. The murderer made up a convoluted story that does not convince. She said her two ex-husbands abused Jude, but punished her son instead. Now she is using the money she has – a lot of it – to pay for attorneys who will appeal the conviction while blaming everyone else for the act of a filicide perpetrator.

It was when I read about the murder of London. He was 6 and liked hats. His perpetrator was his mother, who threw him from a bridge into the freezing waters of a river.

She had fantasized before about driving off a cliff with London. She got the idea from a video made by the hate group Autism Speaks. By the time she reached that bridge and got rid of London, as if the little boy were not a valuable life, she already had the list of excuses memorized. Her defense will be like many others and she will be martyrized. London will be remembered only as the “burden” that led the woman to commit the heinous act.

The news were heartbreaking and made my soul shatter. But it only got worse. And this is a pattern that repeats itself every time: a disabled person is murdered and instead of mourning with my community, I spend all my time trying to explain why all murders are wrong, and I find myself having to defend my right, and the right of disabled people, to live.

I will say it again: I have to defend my right, and the right of disabled people, to not be murdered.

The media, broken as it is, does not miss the opportunity to turn the murderers into martyrs. Because of laziness or incompetence, journalists justify the actions as the inevitable result of having to deal with the “burdens” that we are.

Some in the media are not lazy but show a very high level of malice. They interview murderers, attempted murderers, and their sympathizers, allowing them to demonize the victim. There is no respect for the ones who died, not respect for the victims. Their most vulnerable moments are exposed to make the perpetrator seem heroic.

The best example of this is Dr. Phil, who I call “The Douche Doctor”. Or how my friend calls him “The Shit Bag Fucking Asshole”.

If the media makes me angry, some parents make me sad and worried.

I have seen parents of disabled children, including adult children, defend murderers. They try to silence us by saying that we can’t judge them, that their children are too disabled. They believe that the death of a disabled person they never met has so little value that their deaths don’t deserve mourning. They choose to believe the media darlings, the perpetrators.

Standing with such parents are many uninformed people who do not know anything about disabilities, who seem to believe we spend our lives waiting for the “mercy killer” hero who will end our “misery”.

When we, again, say that the assumption should be that we want to live, they turn to condescension, proving their ignorance. How can we, disabled people, especially the very disabled ones, even know what we want, that we want life?

Then there are all those “secret doctors of every specializations”. They don’t have medical education, but they claim to know all the “bads” of the disability – never anything positive about the victim is said; they diagnose the perpetrators, always a mental illness, proving themselves not only ignorant and ableist, but also bigots. They will fight to the end to “prove” their diagnosis, from a distance, never having met the murderers, not knowing what a mental illness is. It does not matter. They KNOW that the murderers were loving and just “snapped”.

Lastly, there are the ones who like to deconstruct our fears, an attempt to show us how wrong we are in our conclusions.

They refuse to accept that we, and our non-disabled friends who are parents of disabled children and who value disabled lives, do fear intensely when our deaths are seen as acceptable, even desired.

Note: when you try to deconstruct fear, all you get is a lot more fear.

To them, it is rational to starve non-terminal patients to death, if the decision follows protocol, all the way to the courts, if everyone, except the patient, is heard and if the courts decide it is the “merciful” thing to do.

Of course, the patient is disabled.

We hear: the patient could not state their wishes.

I say: assume we want to live.

We point out that disabled people are not offered the same treatment options as non-disabled people.

They say it is not about the disability but their arguments are full of ableism, and they betray themselves by letting it out that the disability makes it hard for the parent/murderer.

We mention historical facts and precedents.

They call us hyperbolic.

The weeks before I wrote the Facebook post were difficult.

They followed months and years that were difficult.

All this time we have be using our energy to defend our right to not be murdered.

We are asking to not be murdered.

We are asking: don’t murder disabled people.

Some people tell us this is too much to ask.


 

"We Cannot Stop" by Amy SequenziaAbout the Author, Amy Sequenzia.

 

 

 

13 Comments

  1. Sheryl on November 11, 2014 at 4:13 pm

    Thank you once again for your powerful words. I mourn for these precious lives lost and fear for those living with people who devalue their lives. xx

  2. Saraquill on November 12, 2014 at 1:31 pm

    I have trouble wrapping my head around why a judge approved starving the 12 year old. Were there no court appointed advocates to campaign for the girl, and why is that judge still on the bench?

  3. Paula C. Durbin-Westby on November 14, 2014 at 2:13 pm

    As a person who had a “minor” kidney stone operation and was in pain for 5 months afterward (not typical) this just strikes WAY too close to home. The initial reports I read only said “routine operation,” not kidney stones, Or maybe I was not processing it visually. Sometimes it takes a long time to get over the pain. I have had kidney stone procedures twice. SO glad no one killed me. I have been having a discussion with some people about disclosing autism for other-than-autism-related medical things, and I will continue to NOT disclose, unless I am wanting something specifically autism-related. This decision was WRONG, and not just because of kidney stones because nothing really justifies it. It’s just that I can EMPATHIZE more since I have had a similar health issue. I wonder WHICH kidney operation they “botched.”

  4. Brenda on November 14, 2014 at 2:45 pm

    Thank you are so right .Disable people have know right. Only judgment
    MY GRANDDAUGHTER HAS AUTISM AND SHE IS THE MOST BEAUTIFUL LITTLE GIRL. LIFE IS VERY STRESSFUL FOR MY Daughter
    But to hurt her will never happen .I hate when children are murder by parents and then say they snap
    It’s know excuse you don’t kill your kids if you don’t want them give them away .

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  8. Catherine Fowler on September 19, 2016 at 7:19 pm

    Thanks for this article Amy if this happened to any other group in our society it would not be tolerated. We should not have to constantly defend our right to live!!!!

  9. Erin on February 10, 2017 at 2:03 pm

    why do you think Autism Speaks is a hate group? I’ve never heard that before, but I don’t know much about them, I thought they were just advocates for autism.

    • Erin on February 10, 2017 at 3:23 pm

      Hi! I actually just went and did research on this, and WOWWWWW. Yes. yes yes yes. I had no idea! they didn’t seem like a hate group but DANG. thank you so much for opening my eyes to this!

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