Sunday, June 25, 2006

Is saying it's hard the same as excusing murder?

Another day, another story about a parent trying to murder her child and blaming the disability:


Kellie A. Waremburg, 32, of Pekin was charged Thursday for trying to kill her 4-year-old daughter, who has cerebral palsy, with a potentially lethal cocktail of medication. Waremburg told police she decided to give the mixture to her daughter to get her "to go to sleep and not wake up."

The child, Lexus Fuller, also has to be fed through a feeding tube, is physically handicapped and uses a wheelchair, has blindness and mental retardation, all of which can be related to cerebral palsy.

Although Waremburg's individual struggles with raising Lexus were not known Thursday or what was the exact reason behind the alleged attempt to kill the girl, her case is similar to that of Karen McCarron, the Morton woman who allegedly suffocated her 3-year-old autistic daughter, Katherine, and told police she "wanted to end her pain and Katie's pain."


There's lots of talk in the disability community about these recent murders (and attempted murders). And it's not just the murders themselves, but the fact that advocacy groups are using these murders as a way to talk about how difficult it can be to raise children with significant disabilities in modern societies that offer little in the way of actual family support.

Now first of all, there isn't any excuse to murder your child.

But I don't think this is really what the groups who are speaking up are trying to say. I think they are just responding to questions along the line of: "Excuse me, Mr. Advocacy Organization Representative: is it REALLY that difficult to raise a kid with autism? With cerebral palsy? With whatever condition includes severe or profound cognitive impairment, Etc?" To which Mr. Representative responds, "Yes. Yes, it is difficult".

And then the reporter---and the rest of the non-disabled world---automatically responds, "Well, see? I don't blame the parent. They were really pushed to it".

No, they weren't. I've been a parent of such a child, and known and worked with other parents of kids with profoundly complex and difficult disabilities, for 16 years. I don't know anyone who has killed her kid.

And although the large majority are having rather ordinary lives, I've known some in deep despair. And still, they don't murder their children.

But how are parents of children with complex and challenging disorders supposed to reveal the truth of their lives, the difficulties that are real and challenging, without causing reporters (and society at large) to jump to the conclusion that murder is understandable?

I ask you.

And once the community in which these murders occurs is made known of the despair of some parents, what responsibility does it bear to try to assist?

Because if it's just about shocking front-page stories, if it's just evoking a "tsk-tsk" response from the community, and particularly if the mothers and fathers who kill get off easily on the basis of "sufficient suffering and punishment"...well, I fear for some other fragile children. I really do.

mary

6 Comments:

Blogger Dream Mom said...

My heart just breaks every time I hear a story like this. It is never acceptable to murder anyone, period. And to harm someone less able should be a harsher punishment.

I think there are plenty of ways to help people understand the challenges of raising children with disabilites. I think most of the time, there are things we need to work on as a society to make things easier for these parents. The more we can help people understand, the better they will understand. Blogging comes to mind as a way to help people understand. I know for myself, it is important for people to understand the love I have for Dear Son, his disabilities and the challenges we face and also solutions or things that would make life easier for us and for others. When we do that, maybe, just maybe, other little children can live.

Mary, you write so many good posts on this issue, I wish you would put some of these in the Grand Rounds each week.

10:27 PM  
Blogger Stephen Drake said...

Mary,

this will go up on the bioethics listserv sometime. It's the closest I can come to a response right now:

did you *read* some of the quotes from the parents? Some of the parent "advocates" clearly were tying "stress" and "burden" to feelings of murder and calling it more or less "normal."

The Peoria paper went the way they did with the *encouragement* of the ANSWERS group and the Autism Society of Illinois. The ANSWERS group, whose definition of "dedicated" seems to equate to "obsessed with cure,"
are largely responsible for the early direction of the coverage - including columnist Phil Luciano's disgustingly titled "Helping everyone but herself..."
(A bizarre title for a column about someone charged with murder and obviously Katie doesn't fit into Luciano's conception of "everyone."

A sampling:

From a friend of McCarron's: "I don't condone what she did," the friend
says. " ... (But) you have those moments. And at the last moment, she snapped."

A leader of the ANSWERS group said this: "…we understand how she
got to hat place. We've all been either at that place or near it, but by the grace of God, we chose differently."

Mike McCarron, Katie McCarron's grandfather, put it best:

"When I see the lead in line “I don’t approve of murder; but…” I just have to buckle my seat belt because I know, here it comes. The
advocate goes on to virtually admit it is OK, or understandable
because Katie had autism. If these people are “advocates” for
people with autism I can’t imagine what the “opponents” must
be like."

Until Mike McCarron spoke out, it would have been hard for most
readers to realize that Katie was only recently reunited with her mother - and died ten days after that.

I think if you want to advocate you need to think about who you want to look for in models. Mike McCarron, his son Paul (Katie's father) and Mike McCarron's grandmother all made sacrifices - gladly. There has not been what bit of meaningful acknowledgment from the autism advocacy
groups of the terrible tragedy that has befallen that family - they've concentrated all of their most eloquent statements of sympathy for the mother.

I think we also need to be mindful of the stories we choose to tell, especially when it involves stories that include other people who can't tell their own side
of it, but will live under the burden of those stories nonetheless. Do you want
to tell stories that will help liberate your child and others in every way?
Or do you want to leave stories that Peter Singer will use in one of his presentations?

--Steve

6:27 PM  
Blogger mary said...

First, I ought to be allowed to say how hard it is to raise my daughter without that being fuel for Singer. His arguments about personhood based on cognitive ability are not contingent on my withholding the truth; I cannot deny my own experience to avoid being used by a Peter Singer. The difficulty in supporting a person with a disability is not an argument for or against personhood, regardless of Singer's logic. Either his arguments about personhood are valid or not; they aren't contingent on the hardship involved in raising a kid with significant cognitive impairment.

Secondly, I have read your examples and think you should consider the "advocacy" group you are talking about. Just putting the words "parent advocate" before or after your title doesn't make you one. The Autism Society of Illinois released a statement that says: "

Autism Society of Illinois extends deep sympathy and support to the McCarron and Whitten families.
Although details of news surrounding the recent tragedies of the McCarron Family of Morton and the Whitten Family of Geneva (April 2006) are unclear, the tragedies themselves bring to the forefront the absolute desperation sometimes felt by many families who are caring for individuals with Autism Spectrum Disorders and other developmental disabilities.
While Autism Society of Illinois understands and empathizes with the often overwhelming and persistent struggles of parenting someone with Autism Spectrum Disorders, we do not condone or support the actions of family members to harm or take the life of their developmentally disabled loved one."
The Autism Society of America should also have made a strong statement that there is no excuse for murder no matter what a parent felt; that autism is not a reason to murder, and that this alleged murder was mom's fault and not the child's and not society's. I don't know why this message didn't get sent along with the message that some parents are having a very difficult time of it.

Thirdly, I understand how people can get to the point where they feel they are going to harm their child, and I am not talking about children with disabilities, just children in general. I understand because I have been the frustrated mom with the colicky baby crying incessently at 3am. But I didn't do it. Saying I understand how someone could get there isn't the same as saying I condone harming a child.

Lastly, I think the harm that will be done is not that "advocates" will say things like, "I understand how she got there; there but for the grace of God go I" etc. The harm will be done when other people with no conception of the reality of these families lives will just shake their heads and move on. The very basis of this blog is that people are responsible for one another. Katie's mom was WRONG. But there are other families out there in crisis, and it's real. Who's going to care about them, once the TV cameras shut down? And how will not telling the truth help?

I am not attempting to argue that because there are no cures for certain diagnoses or because there is lack of community support for certain kinds of behaviors therefore murder is condonable.

I am asking you how parents (not advocacy groups) can talk about the problems they encounter daily without being accused of condoning murder.

mary

7:36 PM  
Anonymous Maureen said...

Murder isn't understandable. Despair can sometimes be understandable. Here in England, there have been two recent cases - an isolated, depressed mother who jumped off a bridge with her autistic son. A father who killed his son "to end his suffering". He was tried for murder, and acquitted. (I think. He may have been found guilty but given a "suspended" sentence). I personally felt some anguish for the desperate mother, less for the father. My judgements are based on ignorance of the facts in both cases. I do think the indifference and ignorance of society as a whole makes life for us much tougher. I don't want sympathy - I would like to believe that the care my daughter gets when I am gone would give her a decent life. In fact, I am terrified of the future.

4:34 AM  
Blogger That Girl said...

I think the timing is very bad, and disrespectful.
Though I felt much like saying that I sympathized with how she felt but not what she did about those feelings, the place to express that is not when talking about the death of Katie, but in a conversation about helping families or caretakers cope.
Just like talking about ways to have a healthy pregnancy is not wrong, but announcing it in the hospital room where your sister had a miscarriage is tacky, insensitive, and can be seen as deliberatly hurtful.
Part of the problem (which I would love for you to address in a post) is the Othering of both the child and the mother - the child becomes "disabled child" object of pity and the mother becomes "saint mom", object of awe. Whenever you turn anyone into an Other like that you are not seeing them as people.
Being the caretaker of a special-needs child is intrinsically (sometimes) isolating enough without this cliche-drawn picture of a Florence-Nightengale mom impeding interaction too.

12:41 PM  
Blogger That Girl said...

I wanted to add that there are plenty of people who are insensitive enough (obviously) to time a good point at a bad time.
The thing to do with these people is not to challange them on their argument (which may/may not be relevant/valid) but to challange them on their manners. They have irrefutably bad manners.

12:49 PM  

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