How I spent the Disability Community Day of Mourning

2 Mar

Yesterday was the Disability Community Day of Mourning. A day to reflect back on the fact that many disabled people are murdered by those closest to them. And that our society downplays those murders. Recently, for example, the murderers of Alex Spourdalakis were let off with a short sentence and an “involuntary manslaughter” conviction.

Involuntary manslaughter.

Alex’s former mother and former godmother (how can one claim those titles after such an act?) tried to poison him with a drug overdose. When that failed they stabbed him multiple times and slit his wrist, almost severing his hand.

Involuntary manslaughter usually refers to an unintentional killing that results from recklessness or criminal negligence, or from an unlawful act that is a misdemeanor or low-level felony (such as a DUI). The usual distinction from voluntary manslaughter is that involuntary manslaughter (sometimes called “criminally negligent homicide”) is a crime in which the victim’s death is unintended.

Involuntary? Calling that involuntary is a signal that disabled lives matter less.

I didn’t intend to do something as a marker of the day, other than remember some people who specifically break my heart as well as the many, many whose stories I do not know.

No. Instead I went about my life as I often do. I took my family out to dinner at a favorite restaurant. OK, my wife wasn’t there, but we often go out on evenings when the other isn’t there. It’s sort of our way of saying, “OK, since you are having fun, so will we”.

At the restaurant we walked in and the owner looked up and gave us a big smile. He knows us. He knows my kid will be very obviously autistic during dinner. He knows that his entire restaurant will experience this. And he smiles. And he takes our order, by asking us if we will have our regular dishes.

When we were done I could hear the owner offering to move the people in the table behind us. I thought perhaps we were disturbing them, so I apologized if we were an annoyance. No, I was informed, it was just that there wasn’t much room between that table and the one behind it. In fact, he said, he and his wife enjoyed seeing us as a family enjoying our time out. Our time, our way. Our obviously autistic way.

After leaving it struck me–this may be the family that once paid for our meal. One time we went to the register to pay, only to be handed a note saying that some anymous person liked seeing us so much that they had paid for our meal.

Before those who can’t accept families with autistic children having a happy evening–or complain that by reporting it, we somehow demean the experiences of our communities–there is also this. My kid once had a very serious meltdown there. As my wife left the restaurant (which still welcomes us even though, yes, sometimes we have meltdowns) a woman came out of the restaurant and offered my wife help. She was familiar with autistic kids. Perhaps this helpful woman, this woman who bought our dinner and the family behind us last night were all the same. In the end, it doesn’t matter. There are people who accept us.

They accept us because they see us. Because we aren’t hidden. Because we go out in the world, with our obviously autistic behaviors, our meltdowns, all of it.

Acceptance doesn’t mean that we have no challenges. That my kid’s life isn’t harder than most people’s lives. It does mean that even though it is hard, society isn’t making it harder.

And perhaps, just perhaps, some family who in the future has a disabled kid will look back and say–you know, this is going to be hard for all of us. But remember that family at that restaurant? At least there are places where we can go and people will accept us. At least my kid’s challenges won’t be compounded by a society that shames and disrespects him/her.

And maybe, just maybe, the more families who are out there, the more of us parents setting the example that we accept our children, there will be fewer parents who murder their disabled children.

A father can hope.

By Matt Carey

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29 Responses to “How I spent the Disability Community Day of Mourning”

  1. reissd March 2, 2017 at 20:27 #

    Your posts about the autistic victims of parental murder always bring tears to my eyes.

    This one brought a different set of tears, though I’m not forgetting Alex and other victims.

    Tears with a smile. May there be more like this restaurant owners and people.

    Thank you for telling this.

  2. Shannon March 2, 2017 at 21:17 #

    Much love.

  3. vaccinesworkblog March 2, 2017 at 21:20 #

    Love essay. Thank you

  4. Greg March 2, 2017 at 23:50 #

    Does accepting disability, and specifically, autism mean that we ‘normalize’ it to the extent that we no longer seek prevention? And, is this a good thing?

    • brian March 2, 2017 at 23:58 #

      Since ASD seems to begin to develop prenatally due to a combination of parental genotypes and de novo mutations, how exactly do you propose that we “seek prevention?” Would sequence analysis of each embryo be “a good thing?”

      • educationcomboplatter March 5, 2017 at 13:09 #

        I’ve got an idea! Since we know CRS causes some cases of autism – why not campaign for MMR and the like? I’ve never objected to that one.

      • Sullivan (Matt Carey) March 5, 2017 at 19:21 #

        Good points but–Greg did a great job of diverting this discussion to his purposes. I’d like to get back on track.

      • Chris March 6, 2017 at 05:33 #

        I tried to divert him by mentioning some very real causes of brain damage. It seems he actively ignored my contributions, probably because he among those who promote diseases that cause brain damage.

    • Sullivan (Matt Carey) March 3, 2017 at 00:43 #

      Does something have to be “normal” for you to accept it?

      I don’t consider it normal to be expected to seek out a way to prevent my child from existing. I accept that people believe that is a good thing, though.

      • Greg March 3, 2017 at 01:25 #

        No, something does not have to be ‘normal’ for me to accept.

        Yet, while I might accept ‘abnormal’ though, I will forever scream that we should do everything in our powers to prevent a child from becomming brain damaged, and which will likely severely restrict his ability to enjoy a happy life, full of potentials. On the contrary, to me, to not hope for this is not just incomprehenisble, but downright reprehensible.

      • Sullivan (Matt Carey) March 3, 2017 at 02:45 #

        Ok. From my kid’s perspective you are abnormal. I suspect my kid would accept you anyway.

        So. How much brain damage have you accumulated in your life?

        You have some, you know.

        Did you like reading that? Being referred to as brain damaged?

        Now consider the fact that autism is a *developmental* disability.

        If you don’t know the difference between different paths of development and damage, you had no business in this discussion.

      • Sullivan (Matt Carey) March 3, 2017 at 02:51 #

        How often do you scream in front of your son “you are brain damaged. This means you will forever be unhappy”

        Or do you only scream this out of his earshot?

      • Sullivan (Matt Carey) March 3, 2017 at 19:48 #

        Well, you seem to have gone away, Greg.

        Here’s the thing–you came here and derailed a discussion. You made it about your topic, not the one in the article above. Your comments on “brain damaged” appeared, frankly mean spirited and trolling. An attempt to take what was a very good moment in my life and, frankly, piss on it.

        So I tested you. I tested to see if you were trolling and mean spirited. I figured if my hypothesis were correct you would either show that you find the phrase “brain damaged” to be hurtful or you would go away.

        If my hypothesis is correct, here’s the thing–you failed. I had a great night out with my family. You did not taint that memory. In fact, all you did was reinforce the idea that one of the greatest obstacles my kid has to a better life is the attitudes propogated by a minority in the autism parent community.

      • Sullivan (Matt Carey) March 3, 2017 at 19:52 #

        and let me add–

        your attitude that disability = unhappiness, that autistics should see themselves as damaged (false) and that being damaged is also something that equates with unhappiness is precisely the sort of attitude that feeds into filicide. You are part of the problem.

        And you make it all the more important and special that we have a community that accepts us. You made me appreciate that more.

      • Sullivan (Matt Carey) March 3, 2017 at 19:55 #

        and let me conclude–I pity you. Not in the “I’m in an argument on the internet and I want to taunt” use of the term.

        I went out and enjoyed a great time with my family. One based on the fact that we could be happy. That my kid could be happy. And that this was supported by a community of acceptance.

        And you saw that as a challenge.

        That is quite seriously sad. And, yes, I hope that someday in your future you can overcome this.

      • Chris March 3, 2017 at 01:45 #

        “I will forever scream that we should do everything in our powers to prevent a child from becomming brain damaged,”

        Which is why we supporting preventing measles, mumps, Hib, tetanus and other diseases that cause meningitis and encephalitis with vaccines. Plus we encourage proper car seats and bicycle helmets. in addition to proper diets for growing children.

        I don’t think there is much to prevent many of de novo mutations that cause disabilities.

      • Chris March 3, 2017 at 18:15 #

        I forgot other ways to prevent brain injury in kids, like withholding oxygen. My other son paid his housing expenses in college by being a city life guard. We take water safety very seriously in our family.

        Also, my oldest son has a genetic heart disorder called obstructive hypertrophic cardiomyopathy, plus he had seizures as a newborn long before there was an HepB vaccine. I am always curious when people tell that those two things could have been prevented. I have always thought it had to do with some de novo mutation, since his phenotype is so very very different than both of his siblings.

  5. Chris Hickie March 3, 2017 at 12:29 #

    Thanks, Matt. When I see (usually in clinic but sometimes when out and about) parents like you and that love you have for your child it brings a smile and a tear to my eyes as well.

  6. Greg March 5, 2017 at 01:01 #

    Matt, I didn’t go away, but for some reason my comments are not getting through.

    • Greg March 5, 2017 at 01:25 #

      Matt, you said by wanting to prevent autism, I don’t want your kid to exist?

      I’ll be perfectly clear Matt. I want your kid to not only exist, but to thrive. This means not saddled with a disability that will render him/her with a 33% chance of being non-verbal, a 40% chance of being mentally retarded (or ‘intellectually challenged’ if you prefer), and a 85% chance of growing into an adult, unemployed, and entirely dependent on his aging folks to look after him/her. And, yes Matt, I want you and your child to comfortably walk into a restaurant, without you or your child praying that you will sit beside understanding customers that won’t treat your child with scorn.

      Matt, this is what I want for all future Matt jrs, and children for that matter. If this makes me a satantic abliest, then guilty as charged, and go ahead and hook me up with my horns and pitchfork.

      • educationcomboplatter March 5, 2017 at 02:36 #

        Can you cite all of that?

        And Greg, you can’t want his child to exist but want him to have a different child instead of the one he has.

        As for employment, why not go out and advocate work trials for example?

      • Greg March 5, 2017 at 02:36 #

        Matt, it also seems my use of ‘brain damaged’ has gotten under your skin.

        Matt, as many might have noticed, I comment a lot at AoA. I remember using the term there, and one of the regulars really took offense and called me out. Considering that my kids are neurotypical, I really felt bad that it may have appeared that I was taking a swipe at that parent that was likely hurting, by speaking ‘dispargingly’ of autistic kids. Surprisingly, many other commenters subsequently came to my rescue, and defended my use of the term, if it meant avoiding the PC, neurodiversity, bull crap, cover-up terminologies that were really hurting the autistic community. Matt, as someone who is very well acquainted with autism (and I will leave it at that), If I had an autistic child.I would consider him/her brain damaged. It’s a developmental disabilty you say? To me, it’s developmental brain damage.

      • Sullivan (Matt Carey) March 5, 2017 at 04:41 #

        “Matt, it also seems my use of ‘brain damaged’ has gotten under your skin”

        Final comment in this discussion–

        I’ve been at this way too long to let something that trollish get under my skin.

        I have also been at this way too long to not spot a clear troll when presented with one.

        Patting yourself on the back for “getting under my skin” is pathetic.

        Someday, listen really listen to someone who actually understands neurodiversity. The straw-man arguments of AoA are about as informed as their views of autism, medicine, biology, epidemiology (The list goes on and on).

        First off, neurdiversity is a fact. There is a diversity of neurologies. It’t not “PC” to acknowledge facts. No more than it is PC to acknowledge racial/ethinic diversity.

        The neurodiversity movement is based on a simple idea–that people are still people and deserving the same respect despite the differences in neurologies.

        If you find that “PC”, “bull-crap”, “cover-up” terminologies, you only demonstrate that either you really are a bigot or you are very ignorant. Which happens when you rely on AoA for information. I truly hope that that you are merely ignorant and you actually try to understand what you are talking about.

        With that, goodbye Greg.

      • Sullivan (Matt Carey) March 5, 2017 at 04:32 #

        Disabled people can thrive. The pathway to thriving isn’t lacking disability. That’s obvious. Painfully obvious. So many able people are not thriving.

        I see a disabled and thriving person every day of my life.

        Perhaps someday you will understand that. Until then, you are part of the problem.

        When you start trying to characterize me as thinking you are “a satanic ablist”, you say more about yourself than about me.

  7. Greg March 5, 2017 at 04:09 #

    Matt, you also say that you pity me? Indeed, if I were an abliest, who could not, or did not want to accept that an autistic child and his family could have a happy diner outing, then I would say the pity is well deserved. Yet Matt. I know who I am. As for you Matt, I also pity you for being a sell-out, a total fraud, attempting to seek respectability by straddling two opposing fences. Even worse, I pity you because I sense you’re also fully aware of who you are.

    • reissd March 5, 2017 at 04:12 #

      Not accepting the vaccines-cause-autism myth doesn’t make Matt a sell out or a fraud.

      He does much more for the autism community than the people selling fake treatments to parents or burying them in the guilt and anger that the myth forces on them.

      And yes, your comments read ableist. Calling people with autism brain damaged is insulting.

    • Sullivan (Matt Carey) March 5, 2017 at 04:29 #

      Good to see I was correct.

      No, “brain damaged” didn’t get under my skin. It was a signal you were trying to get under my skin. As with your “sell out” comment. Glad to see you shed the thin veneer you’ve been using.

      I hadn’t noticed you comment at AoA. They stopped being relevant years ago. I read the occasional article when someone alerts me to something especially egregious. By the way–people who actually have an understanding of autism do not participate at AoA.

      You may notice I do not comment there. I do not lend my name to a group that is causing so much harm to the disability community.

      I am fully aware of who I am. And I’m comfortable with it.

      • Alain Toussaint March 5, 2017 at 04:58 #

        Let’s put it in the record: I am not brain damaged, I do enjoy having a nice time at the restaurant who other autistics fellow and their autistics kids who deserves a chance to live a fully inclusive life as autistics individuals and have the best accommodation ever wherever it is needed and wanted, period.

        Alain

  8. Judith March 5, 2017 at 17:08 #

    We attended an after party for a Special Olympics competition. The young people were all dancing, eating chips and enjoying themselves. One young man told us that he didn’t like his mother hanging around him all the time because, “She was cramping my style.”

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