Thursday, August 4, 2016

The massacre of people with disability and what parents can do

Until yesterday, I only felt sadness and despair about about last week's massacre of people with disability in Japan. Then I realized there was something I could do. You, too. Actually, you're likely already doing it.

The attacker stabbed 19 people to death as they slept at the Tsuki Yamayuri-en facility in Japan and wounded 26 others. The suspect, a 26-year-old former staffer, had planned the killings, Reuters noted. In fact, he'd stated that he was going to do the deed in two letters given to the speaker of the lower house of parliament in February.

"My goal is a world in which the severely disabled can be euthanized, with their guardians' consent, if they are unable to live at home and be active in society," he wrote.

I read the stories that popped up.  I discussed the massacre with a friend over the weekend. Yesterday, I read a post by writer Elizabeth Aquino, mom to a young woman who is severely disabled. She linked to a powerful Forbes story by Emily Willingham about the "erasure" of disabled people.

Emily noted that if there had been 19 children or restaurant-goers injured, there likely would have been far more of an outcry on social media. She pointed out that given that we live in a world where people often see the disabled as second-class citizens or worse, it's "hard to get outraged when you can't see someone as full human the first place."

As parents of children with disability, a lot of us know just what she means by "erasure." I thought of people who have assumed that Max is a tragedy. Elizabeth reflected on dismissive comments she's gotten about her daughter, including "What a waste her curls are, aren't they?" and "Would you have had an abortion if you knew?"

I wondered what I could do. It's how I always feel whenever a tragedy makes headlines. Only this time, it was personal.

The answer came to me yesterday evening, when I bumped into someone I know in town. Whenever she mentions Max, it's always in a pitiful tone of voice.

"I saw you out with Max a few weeks ago, it's amazing what you do for him!" she said.

"What were we doing?" I asked.

"Taking a walk!" she said.

"Well, that's what lots of mothers do with their children," I responded.

"I guess, but you know, not everyone would love a child like Max the way you do," she said.

I was stunned.

"You know," I said, as evenly as I could, "I get that it might seem like Max is so different, and maybe his challenges are more visible than others' but he's a bright, funny and generally awesome boy and I love him to death because he is my child."

She looked a little startled and said, "I understand." Then we moved on to talking about a new building going up in town.

I was glad I said something. Maybe some part sunk in.

It occurred to me as I fell asleep: This is exactly what we, as parents of children with disabilities, can do on the heels of this tragedy and in the face of those who consider our children less-thans, and keep right on doing. We can spread the good word about our children to people in our lives, on social media, on our blogs and wherever. We can help others see that disability is only one part of who our kids are. One person at a time, we can chip away at the stereotypes, misconceptions and misunderstandings about disability.

We can show the world that disabled lives matter, too.

Photo: Kazuhiro Nogi/AFP/Getty Images


  1. So ashamed I did not know about the stabbings. Where our world has come to. And almost the saddest of all is that the intent comes from wanting to end suffering, but all the wrong ways. I shared your post on Facebook and so agree, we cannot do much but we can always do something, and speaking out is one path more need to tread.

  2. It's sickening what that man did. I definitely try to show the world that my life as a disabled person matters just by being myself and being involved in things I care about and advocating for myself. I realize that my experience is mine and I do not represent the entire community but I also realize I am usually the first person with a disability my friends have befriended/ gotten to really know so I try to educate them.

    1. That's all any one of us can do, Kathryn. My experiences as Max's mom and observations about his experiences do not represent the community but I am the first mom of a kid with disability that many people know, and I do my best to represent.

    2. And sometimes the only one, Kathryn.

      Unless we go to big places and see more than one of us.

  3. Thank you so much for blogging about this Ellen. It's quite chilling how little attention this story got. There will be an online vigil and chat about this on Twitter, 8-9 PM today, August 4. More information here:

    1. Belated thx for letting us know, Andrew, I shared on Facebook.

  4. I feel the same way when people make comments about how it's amazing what I do for Ivy. As though leaving her in a corner to waste away was an option. Would they say the same thing about my taking another child to PT to rehab a knee after a gymnastics accident? I think that if people understood that we don't see our child as any different from our other children, they would have a better understanding of how to interact with said child.

  5. Ellen....
    "We can show the world that disabled lives matter, too." Yes, yes, yes!! Disabled lives matter!! I love that!! Human Lives Matter!! Which is exactly what people who have learning, intellectual or physical disabilities--people who have special needs--are!! They're human beings!! With real thoughts, real feelings, real emotions, real dreams, real aspirations, real gifts, real talents.... Real abilities!! They're not tragedies, they're not mistakes, they're not mutants from X-Men!! ;)
    "Stay hard, stay hungry, stay alive", Raelyn

    1. I. Completely. Agree.

      Also extra points for using that X-Men analogy again.

    2. M....
      Yes, yes, I have used my X-Men analogy before.... Which you've very well read/heard!! I've expressed that members of the LGBTQIA+ community are--sadly--treated by society as mutants from X-Men!! It works both ways, right?! I think that my X-Men analogy applies to anybody who is different.... You get extra points for catching it, Friend!! ;-D
      "Stay hard, stay hungry, stay alive", Raelyn

  6. Thanks Ellen,

    You speak for all of us.

    In response to the person commenting on your walk with Max, I would have added "I love him to death because of who he is and not in spite of who he is - and because he is my child."

    Barbara Koffler-Anthony, Toronto

    1. That is a perfect sentiment, Barbara. I will keep those words in mind going forward.

  7. Why is it that when it's Japan and against disabled people, it's an 'attacker'?

    But when it's America and against LGBT people, it's a 'terrorist'? Because "MUSLIM!!! ISIS!!!" [Never mind that he's homegrown and that ISIS doesn't represent Islam.]

    And the white, racist church shooter?
    Well, he's mentally ill. And don't forget, he used drugs!

    a person who uses terrorism in the pursuit of political aims.
    synonyms: extremist, fanatic; More

    Just food for thought.

  8. I agree so much, the smallest moments of pushing back against that type of rhetoric (especially when the speaker does not know what is wrong with what they are saying) has more effect when practiced regularly by many, can have a massive effect. Sometimes it is hard for me when I push back on family and friends regarding these types of things, but I always feel so much better that I have made them think about what it is exactly that they are saying.

  9. The Left Brain™ has arrived.

    I don't know what kind of vile cowardice drove him to these lengths. He may have resented being neglected in favor of another disabled person or have a phobia of disability. I would also consider other negative experiences and a lack of positive experiences. It helps (me) to depersonalize and analyze in these matters.


Thanks for sharing!