"I hope that I will live one heartbeat longer than she does"



Content warning: This post is about sentiments leading to murder of people with disabilities. Proceed with caution.

At an autism conference recently, I heard the father of a 20 year old autistic man say in his speech to the whole conference, “I hope to live one heartbeat longer than he does. I’m sure many of you feel the same way about your children.”

That sentiment gets people killed. If you are the parent of a disabled child and you say things like this, it is a matter of life-and-death importance that you stop talking this way. The father who said this is probably entirely correct that many of the other parents in the audience felt the same way. I have heard this sentiment expressed by many other parents of children with disabilities (not just autism.)

Parents who hope to outlive their autistic children are talking about people who, barring tragedy, will almost certainly outlive their parents. Autism does not limit lifespan; most autistic people should live to be old. If you hope to outlive your autistic child, it means that you are hoping that their life will be tragically cut short. It means you think they’re better off dead than they would be living without you. That’s dangerous.

It’s not true. Nobody is better off dead. It is not a blessing to die young. Expressing a desire for someone to die young is not love. (People who say this may well love their children in other ways, but this sentiment is not love.)

Please stop implying that your child will be unable to live and be happy after you die. People just like your child live on in adulthood after their parents die, and your child can too. And they will have a much easier time of it if you accept that they will outlive you, and help them to prepare for their life without you.

The only way it’s likely to live a heartbeat longer than your autistic child is if you kill them and then yourself. Many parents who feel this way do exactly that. And, even if you would never kill your child, people who are considering committing murder can hear what you say. If you say that you hope to live a heartbeat longer than your child, it makes the murder that is the only way this can plausibly happen seem like a much more legitimate choice. Don’t give potential murders that kind of encouragement.

In the disability community, we observe a day of mourning and read a list of people with disabilities murdered by caregivers.

The list is long. And it’s only a list of the names we know. There are many others who died without making the news. 

I hope and pray that your child never ends up on this list. I hope and pray that they outlive you and have a happy and meaningful adulthood. I hope and pray that this list never gets any longer. 

One murder is too many. Not ever again.

Under the cut is the (as of this post) current list of the names we know. In loving memory; may these murders be the last:

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youneedacat said:

Joel Smith and I (Mel Baggs) helped compile the original list of autistic people who were murdered by parents and caregivers, back in 2003.  This is a different list, but it incorporates that list so I am adding this on as historical information.

Also… I am autistic and have other physical, developmental, and psychiatric disabilities.  Right now I am in the process of outliving my father.  He is dying of cancer.  We don’t know how long he has, but it doesn’t seem like it will be long.  My mother has a number of life-threatening medical conditions, but has not been given any estimate of her lifespan.  But currently, despite my own poor health, my autistic brother and I look like we will outlive both of them.  My brother lives “independently” (which means he is dependent on all sorts of things, but they’re the same things nondisabled people depend on, so they’re invisible).  I live with a great deal of support for autism and a large number of medical needs.  I have people in my house several times a day and a service at night that can come within 5 minutes at any time.  

Meaning I’m one of those people that parents are afraid to let live.  Because I require extensive supports.  Fortunately, my parents have never expressed such sentiments and never would.  In fact, when my mother first heard someone say that, she freaked out and sent me a long email about how ever since a doctor counseled her to abort me, she’s wanted me around, and I should never ever doubt that she wants me alive.  So when you say those things, you also upset parents who have always wanted their children.  But anyway…

I’m going to survive the death of both my parents, barring some freak accident or sudden change in my health status.  Right now, I’m under treatment for my health problems (I have a feeding tube and take steroids for my adrenal insufficiency), so my risk of death is lower than it’s been in years.  I will not enjoy my parents dying.  Very few people would, unless their parents were total assholes, and even then they often mourn them anyway.  But I’m going to live through it.  I think my attitude towards death is healthier than most nondisabled people.  I can handle this.  Being autistic does not mean that my life will be over just because my parents’ life is over.

If you are afraid of what will happen to your children after you die, then start fighting for services right now.  It is parents and self-advocates who fought for the services that, right now, keep me and almost all developmentally disabled Vermonters outside of institutions.  You can do this anywhere.  People have done it everywhere.  Look at what people have done and emulate it.  Find ways to make the money follow the person, Medicaid waiver programs, that kind of thing, so that a person can live in our own apartment/house/mobile home or with a roommate if we choose, regardless of severity of disability.  The precedents are there, in countries around the world.  You can do this.

Don’t just build what you think is some kind of utopian institution (those awful farm communities everyone seems to love, but they’re still institutional in power structure) and put your child there.  Make a world where your child has a choice of where to live, even if you think they’re never going to be capable of making that choice, that’s not yours to decide.  I know people who couldn’t communicate choices until they were 30, 40, 50, 60, even 70, so don’t write your own children off.  Fight for the same rights that DD people already have in many places.  That’s where your energy should be going, not into whining about how you are the only person who could ever care for your child properly.

Because guess what?  You aren’t.  In fact, in many cases, people who are hired as caregivers do better jobs than parents.  Because parents have all kinds of emotional entanglements.  Parents try too hard to make decisions for their offspring, they cross boundaries that shouldn’t be crossed.  Other caregivers can do this too, but parents are especially prone to it.

One time a man said to me, “You mean I should let some high school dropout take care of my child?”  He had no idea that in the room was my caregiver, a high school dropout, and one of the best caregivers I had ever had in my life.  Lose your prejudices, they don’t do you any good.  I see a lot of classism in parents deciding that paid caregivers won’t be any good at their job, or will somehow be worse or more likely to abuse than parents or family will.

Not that what I have is perfect, but it’s a hell of a lot better than living with my parents, and it’s way better than being murdered.  And outliving your parents is an experience almost everyone has to grapple with, denying that to autistic people (by killing us!) is denying us one more normal experience in life.  Nobody takes it well.  Almost nobody, anyway.  That doesn’t matter, we still all have to deal with it.  Parents of disabled children often have this idea they should shield us from life’s difficulties, and that always is destructive.  Always.