Musings of a Marfan Mom

A Note to All Parent Advocates

| 27 Comments

A couple of weeks ago there was a murder/suicide that caught my attention. The mother and son lived in Sunnyvale, CA, not far from where we used to live. The son was autistic and his mother murdered him before turning the gun on herself. It appears as though a large part of the reason for her actions lie in the stress she felt as caregiver, particularly in her difficulty in finding her son some of the services she wanted for him as he turned 22 and therefore aged out of the programs he had been in.

Quickly, the conversation in the media and online communities focused on Elizabeth Hodgins. They sympathized with how hard her life was, how much stress she was under. It’s no wonder she snapped, they said. From there, the conversation segued into the need for increased services and supports. If there had been more options, she never would have felt the need to do this, they reasoned. Very few people talked about George.

This tragedy has weighed heavily on my mind these past 2 weeks. It’s true, services in CA aren’t fantastic. And Heaven knows I have hit wall after maddening wall trying to get the boys, particularly M, set up with what they need here in Ohio. Dealing with red tape is pretty much a full time job and a lot of the time, it kinda sucks. Plus after all that work, my kids still may not end up getting everything they need to help them be successful.

But you know what? When I made the decision to become a parent, I did so knowing that there are no guarantees in life. Some parents get kids who grow up to be millionaires. Some parents get kids who go to college or get a trade and live a very average life. Some parents get kids who have extra needs and may remain dependent on them for life. It’s not fair and yes, parents and other caregivers do need more help because caring for a child with a disability can be challenging and it can be isolating.

However, there is a time and a place for that conversation and the tragic murder of George Hodgins is not it. As many self-advocates have pointed out, using George’s murder as a springboard for that conversation is implying that it’s somehow ok to kill disabled people if caring for them is stressful. It’s not. It’s never ok to murder your child.

I realize that as parent advocates it is perhaps easiest to identify with the parent in this tragic story. However, being effective parent advocates means being able to step outside of our point of view and accepting where the self-advocates are coming from. And right now, they are saying that no matter how useful you might think the conversation you are having is, it’s disrespectful and downright scary. It creates a second class of people, people whose lives are “less than.” You know why? Because if this murder had happened for any other reason, no one would be excusing it! If George didn’t have autism, parental stress would not seem an “acceptable” reason for him to die and more people would be holding vigils for him, talking about him. And that is not ok. That is not the world I want my sons to grow up in.

So please: take a break from fighting the services fight and take some time to think about George, and all the other people with disabilities who have been murdered by their caregivers. Read some of the excellent blog posts by self-advocates that I linked to above. Then, help re-tell their stories…not as stepping stones for some advocacy effort, but just because they are people who deserve to be remembered and respected.

Finally, consider participating in the nation-wide day of mourning for disabled people killed by family members and caregivers, organized by Zoe Gross.

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27 Comments

  1. Rest in peace, George. May you be surrounded by the light of God forever and ever.

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  2. I would like to respectfully disagree, if I may. I know you don’t know me, I followed a link over here from Facebook, so feel free to disregard what I say.

    I don’t think that anybody is saying that it’s okay to murder a child, and I don’t think that autistic people are being given 2nd class citizen status. I do think that the realities of life with a severely autistic child absolutely must be acknowledged. The stress that autistic parents deal with every day has been likened to the harshest battlefield conditions, and that’s for parents whose kids are young and still getting services. My kid is relatively mildly affected, I will never face this possibility, which makes me lucky; and I can’t even imagine the kind of stress a parent must feel, knowing that there is simply no more help for them.

    Nobody is saying it’s okay to kill a child, people are allowing themselves to see the world through this mother’s eyes, and they do so because they fear that this might be their future some day. As such, I think this is the perfect opportunity to create a conversation about services; if not now, when? You can have this conversation while remembering and respecting George’s life but ALSO acknowledging the stress and hardship that his mother faced, because like it or not, her stress was real. Just like her son’s life was real.

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    marfmom Reply:

    Hi! Thanks for coming over! I welcome respectful disagreement: that’s how good conversations happen! :-) I agree that no one thinks they are saying that it’s ok to kill a child. However, what I’m reading from the adults with autism is that that’s how it feels, because the conversations are focusing on the mother and what she needed, but people are not talking about what George needed or how he might have felt in the moments before his life was taken. We have conversations about services all the time and work hard to advocate for increased funding. There are many stories that we can tell about why that is important. But in this moment, more emphasis is being placed on the stress the mother felt, and she chose to deal with that stress via murder. In any other instance, more emphasis would be placed on the victim and not the perpetrator. That’s saying that she had justification, and no matter how much stress you’re in, there is no justification for killing your child.

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  3. I agree. I’ve said similar things many times. Everyone seems to care so much about what the murderer was feeling, but no one seems to care about poor George. He was a person, too. He had feelings, too. I don’t care what anyone says I will not, cannot, empathize with a person who kills their own flesh and blood. Every parent experiences stress. It’s par for the course. It’s not justification for murder. If this had happened to a child who didn’t have autism people would be screaming for this woman’s head on a pike. There would be no sympathy for her. So why are people so ready to give it to this woman?

    I’m also seriously tired of hearing about how the murder of a person on the spectrum will allow the doors for communication about services to be opened. What utter nonsense. That is a conversation that we should be having every single day until the services that our loved ones need are in place.

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  4. I know this is a typo, but jillsmo wrote, in part: “..The stress that autistic parents deal with every day has been likened to the harshest battlefield conditions.” I think you might not have meant *Autistic* parents, but I am an Autistic parent and also an Autistic individual. No matter WHAT stress parents go through, murder is NOT EVER acceptable. Yes, there needs to be a conversation about the stresses parents go through but not at the expense of *erasing* George, who was murdered, his life taken from him, never to return. Parents of non-autistic children also go through stress, and even ACTUAL battle (military parents). The fact that parents of Autistics have been “likened to the harshest battlefield conditions” simply means that the writer has never been on an ACTUAL BATTLEFIELD. Any soldier can tell you that. I am SO TIRED of that metaphor. It’s just as “valid” as the demonizing messages in the infamous “I Am Autism” video. Parenting is not military duty.

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    marfmom Reply:

    I agree: it’s a poor metaphor, not the least of which because it infers that our child is the enemy.

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  5. Considering that this mother was actually among the luckier moms out there and that there doesn’t seem to be a correlation between relative lack of services and whether a parent murders their child, I just don’t think it’s a justified assumption that this murder could have been prevented through more services.

    In fact, just reading through the coverage of the last few of these incidents, the mothers involved had services they just didn’t think those services were good enough. George’s mother had recently pulled him out of a day program that was doing great things with other adults. Margaret Jensvold killed her teenage son after unsuccessfully lobbying to get him placed in a private school because he didn’t like the school he was currently at.

    So there’s a good argument that what made these mothers kill is not lack of services but rather the pressure that parents feel to get all of the best services for their kids. Arguing that the problem was that they couldn’t get the best of the best for their kids simply feeds into these parents’ belief that it’s actually so bad to not get those extra IEP hours or to not get that new treatment or to not get into that private school that, if they can’t get these things, they’re total failures and their kids’ lives are not worth living.

    If we’re going to have any conversation about something other than George in light of this murder, how about having an actual conversation about what if anything really could have prevented this?

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  6. (sorry that was supposed to be a reply to Jillsmo)

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  7. They didn’t even use his name to speak about his murder, the tragic story of his mother has her name and not a mention of his name, how is that okay?

    He is like that small part of the story that no one cares about, the news I read are like this, there was this poor woman that was terrified and killed hersef because she was burdened by autism, let’s show some empathy, one line about how she had a child with autism that was terrible to raised so she killed him because she loved him so much, no let’s talk more about her and the tragedy that those people and their disabilities cause on families.

    How scary must have been to have died killed by your own mother but no one cares.

    People are saying that it’s okay to kill people with disabilities, it has several names, it’s mercy killing, this is not something new, too many disabled people died in the name of a weird notion of mercy.

    I hate reading that raising an autistic child is like a battlefield, who thinks that this is true? The same people that think disabled people are burdens and tragedies? It can be a hard but not because of the child or because of autism.

    I know stress, I know fear and abuse, my life is full of it and I never wanted to kill anyone, I would never hurt someone I love, if a stressed mother kills her nondisabled child people would never say the same.

    Murder of an innocent is never alright, murdering your child is never alright, don’t try to explain if you are a decent human being.

    Thank you for this great post and sorry about the long comment.

    [Reply]

    marfmom Reply:

    Thank you for the long comment!

    [Reply]

  8. FYI-Actually the “battlefield” reference is a study saying that the full-time caregiver of autistic children has the same cortisol levels as a soldier who has been in extended combat.It was talking about the stress levels not the “fighting.” At no time did the study equate caregiving of a disabled child to “war.”

    I also reject the idea that this is all about lack of money and services. Last year in NY a wealthy socialite murdered her autistic child and herself. It is so much more complicated than a simple soundbite and simple fundraising letter. I personally resent this tragedy being sued so inappropriately.

    The devaluation of the disabled in society is rampant. From the moment you are pregnant until you deliver that child, society puts a huge amount of pressure on parents to abort disabled children. We are told that we have no right to bring the disabled into this world. Until society changes their attitude to those who are differently abled this thread will continue. It begins at the highest levels of society and continues throughout our children’s education. The lack of right to life of the disabled can be extrapolated to those who do live among us. If society believes you had no right to be born in the first place, what value does society put on your life once you are here? Until we as a society decide that it is not OK to abort a child because it has a disability will the disabled continue to be devalued, and we will continue to hear stories which sympathize with the murderers rather than the murdered.

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    marfmom Reply:

    As a person with a disability, who had a child that inherited that disability, I really hear you on that. I’ve blogged about it on more than one occasion. No one would come out and say “Maya, your life, or your child’s life, is not equal to my life” but every time they said “You’re getting pregnant? Don’t you know your child might have Marfan syndrome too?” that is exactly what they were saying. I have a pretty awesome life. Marfan makes aspects of my life more challenging, but it doesn’t stop me from doing most of what I want to do. Having a disability is not the worst thing in the world and my life, and my son’s, are just as rich as the next person’s.

    Thank you for clarifying the battlefield reference.

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  9. I think that’s because in light of such a horrible tragedy, people need to know *why* this happened, and so they look for reasons. Remember that she also killed herself, so the violence wasn’t solely directed at her son.

    What kind of a place does a person have to get to where a murder suicide is their only option? I don’t think that kind of thing is limited just to parents of disabled kids, by the way.

    (this is supposed to be a reply to marfmom’s reply to my comment, just in case it doesn’t end up that way!)

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  10. I’m sorry, I’m having trouble making my comment replies actually show up under the comment that I’m trying to reply to, so I’ll put them here.

    Paula: Yes, that was a typo. Sorry! :(

    Twitchy Woman: I agree that a discussion about prevention is important, but in order to do so the stress of this woman’s situation must be acknowledged. It’s almost like you can’t both acknowledge her stress AND respect her child at the same time; why do we have to choose one or the other?

    I know you guys don’t know me, so you probably think I’m this pro-killing or pro-cure kind of person, but that’s not at all true. I’m not excusing her behavior. I’m not saying that what she did is in any way okay. I just think that you CAN do both; you can mourn the loss of George and you can sympathize with the despair that his mother must have been feeling in order to get to that place where murder and suicide were her only options. Yes, we’ve all known hardship and we’ve all known stress, but some of us are better at coping than others, and just because we’ve done it, doesn’t mean everybody else can.

    I wonder what the dialogue would be if this had “only” been a suicide?

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  11. Hi Jill- first this wasn’t just a suicide so I don’t really think that that is relevant. Truth of the matter I also don’t think advocates are saying not to look at the stress that families go through, the despondency and the mental health issues around being a caregiver. BTW caregivers of those on the autism spectrum are not the only ones that end up killing their charges.

    What advocates are saying and recognizing is that the victim, George, seems to be left out of the mix. I also have read articles how Autism Speaks in seeking funding has written a letter talking about adult services, but in the guise as a parent. Again George is left out of the mix. I believe The Autspot and Autistic Hoya have written pieces on that issue.

    So its not so much that everyone is ignoring the realities of how the mother felt. We are upset because noone seems to care about how George felt when he lost all his services, friends, support and consistency. What might it have been like when the person you trusted the most in the world puts a gun to your head? We just want society to think about George as a human being equal to his mother in want and need.

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    marfmom Reply:

    Autism Speaks wrote a letter and pretended to be a parent? Any links?

    And yes, totally agree with what you wrote.

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  12. Jill I am not really sure why I came across as not acknowledging the stress. What I’m questioning is not whether she was stressed, but *why* she was stressed.

    I don’t buy that it was because she lacked services, just based on the actual details of her story. So many of these parents of disabled kids who commit murder-suicide appear to be quite well off and getting far more services than most other parents of disabled children. I’m sure many parents are stressed out primarily because they actually lack services but that seems not to have been the case with her.

    I strongly suspect that the true thing that was stressing her out was that she felt pressured to get the *best* services for her kid and that these would mean the difference between a really good life for her kid and one that was so miserable that death was more acceptable. There’s far too much pressure on parents – especially upper-middle-class parents like this one – to compete for the “best” services for their kids. I’ve see this kind of attitude in my parents from time to time, and in the parents of friends of mine, and it usually just makes people develop martyr complexes, but for a parent who’s espsecially prone to catastrophic thinking (to use a term from CBT), this sort of pressure can be extremely dangerous.

    If you permit the comparison, imagine that she were a wealthy person who killed herself and her kid because she ran into some financial problems that would have landed them in the lower-middle-class. This is not an uncommon motivation as family murder-suicide motivations go; downward economic mobility is extremely stressful even if you’re not falling into abysmal poverty. But I am pretty sure that nobody would be saying “this could have been prevented if families had more money.” That would not only be missing the point of what was actually stressing the mother, and it insults the countless lower-middle-class parents who’ve been making do this whole time without killing their kids. The fact that there are a lot of people who are really desperately poor is an important thing to talk about but not particularly relevant to the situation. Here, it was simply disappointment – extreme disappointment – and that’s not something you can get rid of by improving people’s economic situations overall since they’ll just respond by adjusting their expectations accordingly.

    It’s not a perfect analogy but it’s the best I can come up with. I am worried that I’ll come off as saying “people in really bad situations should just suck up and deal,” which I’m not. I’m trying to say “financially well-off parents of kids with disabilities need to stop pursuing perfection at the expense of their own children’s well-being.”

    Sorry I’m being long-winded.

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  13. “However, being effective parent advocates means being able to step outside of our point of view and accepting where the self-advocates are coming from. ”

    Empathy?

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  15. It’s even sadder than no one is talking about this young man’s father, who had to come home to this tragedy. I can’t fathom how he must feel, losing his son and trying to make sense of what his wife did.

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    marfmom Reply:

    True too. I’ve thought about him a lot, especially as his son’s murder and wife’s suicide have ignighted a firestorm within the autism community. I would imagine that may make it more difficult to grieve something that is already complicated. :-(

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  16. Because sympathizing with a murderer is not a good way to prevent murder, that’s why.

    I think every person who has ongoing responsibility for caring for a child (and especially an infant) has been angry and stressed to the point where they would harm that person if they didn’t know it was wrong. Knowing that it is wrong and inexcusable to assault or murder another human being makes it easier to avoid doing so.

    Sympathizing with those who murder autistic adults and children in stressful situations makes it dramatically difficult for others in those situations to refrain from committing acts of horrific violence. It doesn’t help anyone.

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  17. And also —
    Wasn’t the man in question an adult and not a child? If his mother was really *that* stressed out by having to care for him, couldn’t she have abandoned him rather than murdering him?

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  18. Jill- I am saddened to see your responses to the post. The Autistic self-advocates have brought to public consciousness a completely essential discussion that will be of help to every Autistic person alive: DON’T KILL ME. It’s the same kind of discussion they try to raise time and again about seclusion and restraint – “Don’t torture me,” and about “cure”- “Don’t obliterate us.”

    However, every time they try to raise these issues, some non-Autistic parent highjacks the discussion by objecting to some point they have made. I have met you, and I am sure you are well-meaning, but marfmom’s post was about the terrible way that the murder of an Autistic young man, George Hodgins, was discussed in the press and in the vast majority of parent autism blogs. So when the rare parent takes the torch and amplifies the message of the Autistic people who are so aggrieved by this, so personally affected and hurt and enraged, what are we as parents to do?

    I don’t think it’s our role to make certain that a parental point of view is present in EVERY post on the Internet. If parents are going to be better allies of Autistic people- our own children included- we must give space to the Autistic people who are fighting for everyone on the spectrum. We need to listen to what they are saying and consider our role as an ally: will what I have to say help? Will Autistic people be bettered by my specific comment? Do I need to contradict them right here and right now?

    Please consider that if there is any question that the answer might be “no,” then we need to leave them space to be heard.

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  19. Hi Twitchy woman (love that name)-
    I can’t even guess about what her motivations were; you could very well be correct with your suspicions. Personally I can’t even comprehend a possible scenario where murder suicide seems like my only option. :(

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  20. Hi Elise-
    Thank you for that clarification. I apologize if anything I’ve said here has been upsetting to anybody in any way.

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