Musings of a Marfan Mom

A Note to All Parent Advocates

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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.

27 Comments

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