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This Is How We Dare

You probably saw the hateful pink letter this week, the one addressed and delivered to the family of Max Begley of Ontario (If you haven’t read it, please use this link to read it. I don’t care to repost it here.). The social media outcry has been huge because the letter represents the worst of the attitudes to which people with disabilities are subject. People read that letter and were shocked; how could anyone suggest to a mother that her child be euthanized? A mother herself, no less? Who says that about a child?

And yet, I remember the time I was at the grocery and there was a man there who had Tourette’s syndrome or a similar disorder. Every few seconds, he vocalized loudly, and I heard a woman say under her breath, “Freaky retards should stay home.” In the meantime, my own son, eight at the time, was at home with his dad, flapping and swinging his way through an elaborate stereotypy that dominated his body for months.

There was the time Carter and I were at the post office and a stranger, observing Carter’s behavior, called him a brain-damaged brat.

Thousands of times, I have turned on the TV after a mass shooting or a celebrity meltdown to hear talking heads discuss the mentally ill and have resolved, again, to protect Carter from knowing that the words mental illness apply to him as long as I possibly can.

And then, there were the negative comments on my recent post Dear People Who Do Not Have a Child With Disabilities, almost all of which asked (demanded) some version of how dare you?

To sum up: some people want to know, how dare you ask the world to speak to you in a new way? They mean well; this is just the way life is! How dare you?

To sum up the anonymous letter sent to Max Begley’s family: how dare you inflict your son on the world?

To sum up the comment from the woman in the grocery: how dare he be out here in the world where there are other people who might see and hear him?

How dare we?

Why are parents of disabled children so incredibly self centered and self focused? They want everyone to bend over backwards to accommodate them and their kid. Don’t you know that EVERYONE has their battles? It’s not all about you, all the time! How often do you reach out to your friends to find out how they are doing? How often do you even know what is going on in anyone elses’ [sic] life except your own?

Asking for what we need is not an indication of self-centeredness or selfishness. Asking for what we need is healthy. 

Each of us, whether we have a child with a disability or a typical child, has our own set of issues to deal with on a daily basis. Some, admittedly, are more complex than others. But, again, I stress; you can either let all that is thrown at you drag you down and OWN YOU, or you can wrestle your life back and OWN IT. The choice remains yours.

Asking for what we need is not weakness. Asking for what we need is brave.

 Complaining about it and attacking those in society that make attempts to understand my situation by asking questions, or comments like the “What You Say…” is counterproductive. It only serves to make the situation worse and as so many have pointed out on this blog, who among us needs more to fret over and get upset about, not me.

Asking for what we need is not attacking others. Asking for what we need builds relationships.

Just don’t assume that ALL parents of disabled children or people with disabilities are that angry and negative all the time. Most of us get over it and get on with our lives.

Asking for what we need is not a sign of anger or negativity. Asking for what we need is proactive.

I also feel that if you can identify that a person is well-meaning, there is no need to make other assumptions about they are saying. Trying to be understanding is a two way street.

Asking for what we need doesn’t mean we think that other people are bad or wrong. Sharing information is sometimes part of asking for what we need.

All I got from this is that it is better to ignore or show no support to you or any mom with a child that has disabilities so that I don’t offend you or them. Isn’t it worth looking past the words that were said and appreciate the effort of support and even care towards you and your family. 

Asking for what we need is not criticism. Asking for what we need is an invitation to deeper relationship.

Sounds like you’d rather not talk to people who don’t have a child with disabilities. Shame on them for trying to be supportive or positive? Maybe they should just tell you, “Wow, it must suck to have a kid like that.” Maybe you could print out a list of things that are acceptable for them to say to you so you won’t be upset by them trying to say a nice thing and messing it up.

Asking for what we need is not shutting people out. Asking for what we need is a request for healthier community and an effort on our part to build that community.

So even if people are trying to be nice, it’s THEIR fault that YOU interpret their comments a different way than they were intended. So basically everyone should just shut up and not say anything because even the people who are being nice will still be villified [sic] in your mind.

Asking for what we need is neither hate nor vilification. Asking for what we need is an appeal to our common humanity.

 It comes across a little bitter.

Asking for what we need is not bitter. Asking for what we need is hopeful

I think it’s important to remember, though, that in MOST cases, these people are trying to be helpful.

Asking for what we need is not ignorance. Asking for what we need is about believing the best of people.

We dare to ask for what we and our loved ones need because people with disabilities are, first, people. We are humans who have lives to live. We need to go places and do things, just like you. We need sensitivity and kindness, just like everyone else.

We dare because it is always OK to ask for what we need. Always. Some people don’t want to meet our needs, and it is still good and healthy for us to ask.

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7 comments to This Is How We Dare

  • Dear haters:

    Yes. I’d rather you ignored me than told me my so is too old to be doing whatever it is he’s doing that you think he’s too old to do. Thanks to his mental illness and/or his medication, his IQ has deteriorated 35 points since he was in Kindergarten. Just because he’s 6 feet tall doesn’t mean he’s a grown up, emotionally or intellectually. Forgive me for not running out and having that printed on his t-shirt.

    True, lots of well meaning people say hurtful things without knowing they are hurtful. I find it ironic you want us to spare your feelings by not telling you they are hurtful, but you don’t give a rats ass about our feelings.

    I don’t have to ask how everyone else’s kids are doing. I get it every day. Whether it’s on Facebook, or the annual Christmas brag letter, chatting on the corner waiting for the school bus, or calls and emails reaching out to say hi, I hear my friends and family brag about their kids. And when I’m asked how my family is, 99% of the time I will say “fine,” and move along, because I don’t need to explain it for the 1,000th time / get sympathy / get unsolicited advice.

    No one is asking you to change how you speak to us. In fact, I actually prefer it when you tell me to suck it up, or God only gives us as much as we can handle, or if I only changed his diet to gluten/sugar/meat free he’d be cured, or how can I stomach putting all that medication into him. I prefer it because it’s easier to avoid people who have no qualms about being douchey than try and educate them all. So keep being douchey. I appreciate the very visual warning of who and where you are.

    THAT’S what bitter sounds like.

  • Melanie

    Can I just say – I admire you so very much for your total honesty! It is hard for anyone to be honest about their feelings, much less those of us who have little to no time to think about our feelings. Thank you, thank you, thank you!

  • You are the best advocate and educator I have ever met. Your words are so important to the betterment of this world that our kids are stuck with. I’m honored to know you.

  • Jenn

    I relate to so much of what you say. My kid is the one that people stare at and or say rude things about. 10 years ago I would cry about it/apologize. Now, I just mentally flip them off and give them the stink eye. I refuse to just stay home with my kid. The only way she has learned to act appropriately in public is by being in public.

    I have two really close friends. One is always telling me what I am doing wrong / what I should try next, ect. (her kids have ADHD, mine has severe ASD with major mood and behavioral problems). My other friend just chats with me about each others lives while we let the kids all just be with each other. Actually, sometimes my girl blends in TOO well with them and I panic cause I think she ran off…

    Guess who I prefer spending time with. I tend to like anyone who treats my kiddo well, though.

  • Rosie

    Has anyone ever tried a more benign/all encompassing “label” for these afflictions? We see political corrections all the time, but no one has hit the mark. Maybe this one doesn’t either. But sometimes we need a word for things. How about C D? Cerebrally different.

    Cerebral differences. Simple, not using overused pointed words. Nothing more to explain. Cerebrally different. We’re all different.

    I like it. Let’s give everyone a chance without hurtful labels. I so dislike labels. Kudos for your discussions.

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