Tag Archives: disability

Feeling Snappy

1 Mar

Do you remember the film “Crazy People”, in which Dudley Moore’s character brings refreshing truth to advertising?  It’s hilarious.

My internal editor left me a post-it about needing a break from trying to keep up with the pace of my brain and the demand by my heart and soul, in any conversation, any debate, to “first, do no harm”.

So here’s the first in a series dealing with issues we face in the disability and the parenting kids with disabilities communities.

Because I’m done listening to assholes trumpet on and on, wailing about political correctness, as though the very concept of civility, of being aware and respectful of differences exists for no other reason than to annoy them.

And I’ve had enough of the shit sandwiches we have been expected to eat for far too long.

More of our experience with the r-word.

Take the Pledge.   stw-un-dated-dark

Advertisements

“That’s retarded!” or “What a retard!” or “Are you retarded?”

11 Feb

bullied.jpg



This is my son’s worksheet from after an incident at school today. It wasn’t the first incident. Today, though, they surrounded him and joined in and taunted him. It started because one student called him a retard.

This is not ok.

I realize many people still use the “r-word” casually and I realize many people use it and think it is ok if they use it because it was considered acceptable when we were growing up. It is not acceptable now. Please consider what you are saying when you are calling a friend “retarded” or “a retard” or calling their behavior “retarded” as in “that’s so retarded” or “you are such a retard“. You are saying (even if this meaning is unintentional) that people with developmental, cognitive, and physical (people assume far too much about cognition based on just a glance) impairments and disabilities are less than you, are less than “normal”.

Our community has fought, and continues to fight, just to live as others live and to have the same rights as Joe or Jane Average. We all have dealt with adversity, even the youngest in our ranks.

Do not add to the vitriol and mistreatment by using that word.

If you use it now, please stop. If you use it by accident… That happens, but think about the child or adult you are really hurting, and vow to never use that word again (and share this message. Please.). If you hear a child, your child, a nephew, niece, neighbor, etc… use the “r-word“, tell them what I am telling you here. Tell them it hurts. If you are a teacher or school administrator or support staff, please consider spreading awareness that this word is inappropriate and too many students are still aiming it at other children, and not always in a casual way.

Some of those children, being called retards or asked, “are you retarded?” on the playground, in the halls, in the cafeteria are children who have been fighting hard their entire life just to have a seat at the table and in many schools, inclusion means that the table has kids with disabilities.

If you think it’s not a big deal, ask those kids and ask their parents how they feel about it. Ask an adult with disabilities. If you don’t know any you feel comfortable asking then please ask me. It is a big deal.

I was called that dreadful word, as a child with developmental delays, and my son has been called that word daily, at school. My kid isn’t “normal” (which is a word we also don’t use in our home.). He’s better than that. His response to these lunchroom bullies is to explain to them why the r-word is not an acceptable word to use anymore. He is so much better, kinder, smarter than those nasty 8th grade boys. He would never call another child anything other than their first name, because he has been tormented and he knows that teasing and bullying is wrong. He is so much more mature than they are. He can’t fight back the way a developmentally average child would. So he explains. He tries to explain to these bigger kids why they are doing something wrong and mean. Which, of course, makes things worse, and magnifies his differences (which I see as such magnificent strengths) to these bullies. And the taunting increases. Where do you think these kids first heard the r-word? Probably at home, either from a parent or in a movie/on a tv show, and then they spread it around.

WE CAN STOP THIS.

Sticks and stones may break bones, but the reality is that words do so much damage, and until you have been at the receiving end of them, for a lifetime, it can be impossible to fathom the destruction they can cause.

Please share this and share this link: http://r-word.org/r-word-why-pledge.aspx#.Vr0azN-rTdQ

Please take the pledge and spread the message to family, friends, coworkers, classmates and ask them to move the message forward that the “r-word” is not acceptable in 2016.

Thank you.

xo,
Bek

An Obvious Sign.

25 Jun

Obvious sign of a day that needs to come to a close… Not being able to find my reading glasses.
Yes, I was wearing them.  It took me 10 minutes of squinty searching and they weren’t in the freezer or the spice cabinet.  I found another pair and popped them on.
I was, then, wearing two pairs of reading glasses on my face, and another on the top of my head, with one pair hooked on my collar, while I searched for any single pair of reading glasses so I could check my email on my ipod and recline with a cup of tea.

At least it was only four pairs time.

It’s progress.

(four weeks into summer break so far)

My boy is the sweetest, kindest, and most patient person I know. When I apologize because I’m too tired to take us on any big adventures on the average day, or when the pain gets bad enough to warrant a day of Spongebob and Cheerios, heatpacks and drawing, he gently tells me that my apology isn’t appropriate because I didn’t choose the pain or the fatigue and he tells me I’m his “sweetest, cutest, nicest Mama”. I tell him that I’m also the luckiest girl in the world because I get to know him and be his Mama.

I don’t want him to ever feel like his role is, primarily, soother. He is my child and I am his Mama. We are best friends and on our really difficult days, we are kindred spirits who just don’t fit in easily but always fit in with each other. (Though these days he’s getting awfully close to the border of where I am really embarrassing in my goofiness, when we are out in public. I get reminders before we get out of the car.) At the same time, there is so much negativity out there about how hard it is to be the parent of an autistic kid and I make sure he knows that the difficult parts of parenting and his autism is other people and not him and that he is a joy. I also remind him that we are all works in progress and he has been saying that, lately, whenever either one of us has a particularly spazzy or goofy moment.

I am the luckiest girl in the universe.
I am the luckiest Mama in the universe.
I am fortunate beyond measure to know this remarkable kid.

Here he is, jumping for joy:
So happy!

And right now I need some sleep.
There will be a post to catch up on the events that I have skipped over… Eventually.

Goodnight.
xo
B.

Opportunity to bust down some barriers…

18 Jun

Just keep swimming. Just keep swimming.

13 Jun



Pedal

Originally uploaded by CleverIndie

Physical Therapy (for me) ended yesterday.

The loss of my only undivided me-time has brought up many things.

Lots of tears.

This was my first break in almost 6 years. I had 18 hours where I wasn’t in charge, out of almost 50’000 on duty and on high alert.

I’m exhausted. I’m angry.

The true colors of some people are really shining through, and not in a good way. Having a not-readily-visible disability and a child with different needs brings out the narcissism in other people. It’s partly the myth of the supercrip. It’s partly their choice to live in denial. It’s a whole lot of their narcissism. If they don’t accept a fact then it doesn’t exist. It’s like “La la la let’s pretend everything is ok and then it is! And if it isn’t lets kick the person when they fall to the ground and then call them negative when they tell us to stop or start to cry! She’s dead from our kicking? She is cured of her disability! Isn’t positive thinking grand!”

Ok. A bit of sarcasm (just a dash, right). But I don’t feel like boring you with back story. And positive thinking is wonderful. It’s the kicking and the holier than thou-isms that I have the problem with. It’s also the living in denial part- ever wonder why disabled folks are often depicted with a chip on their shoulder? The loss of certain abilities eventually (over a variable passage of time) becomes accepted fact, but the bitter pill to swallow is the loss of family and friends and the feeling of being tricked, cheated, resented, and lied to by supposed loved ones who invent their own truth rather than bothering to listen to the one person who has experienced it. Try trusting anyone after people who were once at the very core of your world and your family decide what you can and cannot do, not based on any reality except their own needs, and if you try to explain you get labeled as selfish or lazy or negative. And if you do what you can to help them with their needs it is never enough. Any which way, you wind up being judged rather than accepted.
It’s a losing battle. I feel stupid for even trying to fight it. I have to learn to conserve my energy and to say goodbye to those who cannot see past their own noses.

I’m in that really weepy (ok, sobbing) part of building up to cutting off my hair (not really going to hack it off, yet), blasting “The Warrior”, and moving stompingly forward.

But I’m tired and my body really really hurts.

No support for this broken body.

Fact. Not whining. Not negativity. Just fact.

I’m putting this out into the universe because my voice is hoarse.

%d bloggers like this: