Letter To The Others

You’ve seen me at the playground with my son and passed us in the mall.  He is the one in the wheelchair, the one who drools, and vocalizes with insistence instead of words.

I owe you an apology, not for who my son is, but for what I’ve done to you.

I tend to be pretty zealous about the words you choose, and in doing so probably shut you down. You see, I really don’t like the word retarded. It’s too loaded, full of negative connotations. But, it’s hiding in my house, sealed in an envelope, written in a letter by my doctor.  My son has a diagnosis of mental retardation and I don’t even like those words coming from a doctor. I may even bristle inside a bit if you want to know what’s wrong with him. There are other hurtful words too, but I don’t believe you say them to hurt me, in fact, you may not know what else to say.

Or perhaps you do. Maybe you’ve been flooded with information about People First Language or been given options like “cognitive impairment” or “developmental disability.”  I’m wondering if it makes you stop and think before you speak, even get flustered.  Are you the one who smiles shyly as you walk by because you’re too afraid to say the wrong thing?

Here’s what I want you to know: while I do feel strongly about the words chosen to describe my son, you’ll hurt me more with your silence.

My son is here to teach us all about the beauty of our differences, to stretch us beyond our comfort zones into each other’s lives.

So please say hello to him. You can ask me about my son too; what grade he’s in; what he likes to do; if he gets along with his brother.

Please accept my apology for confusing you, overwhelming you, silencing you. I look forward to talking to you.

Fondly,

Another Mom

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Shared at Joy in This Journey

What’s Up with Courtesy Medals?

I’ve been glued to the Paralympics this week and love how this event puts people with disabilities center stage based on their own achievements. There’s just one thing that bugs me; why are guide runners getting medals?

After watching Wheelchair Rugby, we’ve all learned never to pet someone who uses a wheelchair, right? Sometimes people with disabilities are accompanied by a caretaker, interpreter, or guide. The rule is, if you want to speak to the person with a disability, speak to them, not the person with them. Sounds easy enough.

For example, I’m going to approach a deaf person with my hand out, look at them and say, “Hi, my name is Heather. What’s yours?” I will NOT smile at her, turn to her interpreter and say, “What’s her name? Tell her my name is Heather.”

We need to see people with disabilities as whole and valuable individuals.  That’s why I’m loving the Paralympics. Which brings me to the guides…..

People with varying levels of visual impairments are competing in cycling, running, and football (soccer). They can choose to have a sighted guide or not. This is the first paralympics ever that guide runners are getting medals.

The commentator from Channel 4 in Great Britain called them courtesy medals, as in it’s not really about you but thanks for the effort. It seems that having courtesy medals would somehow dilute the meaning of any medal. Since this is a paralympic first, I have no problem with this issue not being clear, but as I see it, it needs to be clarified and communicated by the time we go to Rio. Here are 2 possibilities:

The guides DON’T get medals. They assist the actual competing athlete in a unique way but it is not their (guides) event. They wear pinnies and are called guides. They are part of the team that includes trainers, coaches, and whoever else propels the athlete to the podium. The athlete takes center stage.

The guides DO get medals. If they get medals, they should compete as a team. They should be wearing a team jersey instead of the orange pinnies they’ve been wearing. They should be addressed as a teammate, or sighted runner, as opposed to guide which implies some sort of hierarchy. In the relay for visually impaired runners (take a moment to picture that please and be amazed) the guide actually carries the baton. Seems to be a job for a teammate.

Now before I show you this most fabulous video, I feel compelled (yes, I was yelling at the TV) to clarify something. Just because a person is visually impaired does not mean they’re deaf. A blind person can hear a crowd roaring their name and can independently raise their hands to wave if they choose. Don’t grab a blind person before asking them and receiving instruction about how best to help. The reason all of these rules are broken in the following video is because these teammates, sighted and visually impaired, have been working hard together and have their own mojo.

Here’s the race that led up to the best medal ceremony EVER, I kid you not, and I can’t find it anywhere. If you find it (Women’s 200m T11 final) please post in the comments.

 

So, what do you think? Should guides be given medals?

More Food for Thought

Ok- I’m sure to offend someone with this post so let me just start by saying this is just my opinion and it’s sort of messy and grey, as I believe are most things in life.

I’ve been reading about and thinking about the idea of our “broken” children. My knee jerk reaction is that Aidan is most certainly not broken, he’s just different. I still feel that way, somewhat. It’s a loaded word, one I wouldn’t use in front of him nor when I need to be his cheerleader. At the same time, come on, I get it, he’s broken. Let’s not overlook the obvious. He can’t walk, he can’t talk, his brain can’t even get through the day without a monstrous lightening storm. That’s broken. Aidan’s body does not work the way it’s meant to. To deny that would negate his (and my) hard work. Aidan’s achievements take a village and whole lot of effort.

However, here’s the important part: Aidan being broken in no way means that he should be less valued. This is the balance. We need to call the situation what it is and then cherish, appreciate and find beauty in his brokenness. Because all of this is very murky, I reserve the right to my knee jerk reaction until I muddle through and find myself somewhere in the middle being honest.

The truth is, Aidan is broken. He’s also the most perfect and precious Aidan Bowie there is.

P.S. If this post got your knickers in a twist and you still want more food for thought, take a deep breath and read here. While this dad refers to his daughter as broken, he also calls her a monster-slayer. There is great victory in that.