If we don't talk about disability, will it go away?

I've spent a lot of time in the last year and a half imagining what the world would look like if disability were considered normal. What if it were no more remarkable than the color of a person's eyes?

There are many people who advocate this idea. To them, a disability is just like a person's race or gender. So, for example, just like we wouldn't need the backstory on an able-bodied person to judge his singing ability, neither should we ask the disabled person.

Many of the people who commented on my quest to find the best way to address the elephant in the room said there is no reason for me to say anything at all. In fact, by being upfront about it, I would be giving Malachi's cerebral palsy primacy in who he is and how people see him. The best thing to do, said many commenters, is to not talk about it or be very brief.

As much as I try to think about it in this way, it just doesn't ring true for me. Not talking about disability will not make it seem more normal in someone else's eyes. Not talking about a taboo is not an effective way to erase the fear, uncertainty and discomfort the majority population has about it. The only thing that helps in the long-term is talking about it, and guiding others towards satisfying their curiosity about it in a safe and respectful way — something they almost certainly won't know how to do automatically.

It reminds me of a time when I was about 16. In preparation to volunteer at a domestic violence shelter, I was in a group training with about 20 other people, all much older than me. There were several black women in the group and at one point the conversation turned to oppressive language and how saying "black" was offensive but saying "African-American" was inaccurate. Someone else chimed in with: "I hate it when I hear the term 'people of color.' I mean, I don't see any clear people walking around!" Everybody nodded and mumbled their assent, but I had had enough.

I told them how important race issues still were in this country and how important it was for us to have words to talk about them. Taking away term after term or otherwise making the majority population scared or ashamed when they are trying to be appropriate will just make us not want to try the next time. Even if the words are not perfect, we have to be willing to see the intent behind them. Until racism is well and truly not an issue at all, we still need ways to describe each other. Simply erasing them from the language won't make the prejudice go away.

Likewise, simply not talking about an obvious or unusual issue will not make it seem normal.

A fabulous performance with a huge unspoken question

Today's post builds on the issues discussed here and involves some audience participation. Got your No. 2 pencil ready? Good!

Step 1: Get a box of tissues.

Step 2: Watch this video. (Seriously, watch it. It's awesome and worthwhile, the rest of the post is about it and, c'mon, what else do you have to do right now?)





Step 3. Discuss.

In particular, I want you to ask yourself whether you think the producers should have indicated his disability earlier or later or not at all. How would your view of his performance have changed if you didn't know his backstory? Would his rendition of "Imagine" been as emotional, poignant and powerful? If he hadn't talked about his disability at all would you have been distracted during his performance, wondering what the deal was? If they hadn't said anything, would you wonder why they kept flashing on a white woman identified as his "mum" and his brother, another young Arabic amputee? Or is that all ultimately not relevant to his singing ability and therefore shouldn't be discussed?

Step 4. Scroll back to 1:20 when one of the judges asks how old Emmanuel is. Note how he responds: "I'm not exactly sure." Do you think he says that every time someone asks his age? Or does he have to decide each time someone asks him this simple question whether it's worth going into the whole story? Also note the pause after his answer. What if he hadn't voluntarily continued to talk about it? What would have been a polite way for the judges to ask about his disability — clearly a fascinating part of who he is — without seeming like they were prejudicial or trying to define him?

At what point do we address the elephant in the room?

What does it feel like to have cerebral palsy? (Guest post)

A question I've been wrestling with for a while is "What does cerebral palsy feel like?"


So, I asked a blogging buddy who writes at Life of the Differently Abled. If you want a window on the life of an adult with CP, I highly recommend you check out her blog.


Here's what she said when I asked her what CP feels like:

Hello to the loyal readers and new friends of this blog and my great appreciation goes to Shasta for allowing me the opportunity for a guest post. Shasta approached me to try and understand her son who has cerebral palsy and what it felt like.

My name is Laura Forde. I am college educated and live in Canada. I myself, have quad spastic cerebral palsy and one of Shasta’s questions to me was something that I have spent a little time pondering before writing this post, she asked: what does cerebral palsy feels like I’m asked this question frequently and have done my best to describe the physical feelings of cerebral palsy but in that previous post I neglected the emotional component of cerebral palsy.

I have come to the harsh reality that cerebral palsy means I am physically slower. This when I was a child worked against me, I was often left out by my peers this wasn’t meanness. This I feel was simply something that was a norm for me. My physical disability and use of wheelchair seemed to automatically label me as different. I won’t lie that difference presented a sense of social isolation. That being said I have always had a small but mighty core group of friends.

Thank you for allowing me this introduction and I hope you will invite me back  

Wordless Wednesday: O, HAI, I CAN HAS LAP NOW?

This is probably only funny to me, but oh well.

I love lolcats, so it's past due that I made my own featuring our very own Tilly. She's been great since the boys came home, but once they are asleep, she INSISTS that it's her turn now. She will follow me around the house yelling at me until I sit down so she can sit on me. This picture was taken when I had the audacity to put my feet up on the chair and hug my knees to my chest, denying her a lap.

No dice, said Tilly.

(BTW, I don't need to explain what lolcats are, right?)

The elephant in the room

The older my boys get, the more I find myself in public with them, knowing the person next to me is in the process of figuring out that there is something not quite right about one of them.

Today I went to a library storytime for babies. For most of it, Malachi was in my arms while Jaden roamed the room, but that wasn't too unusual; many other children were in laps as well. But at a certain point the storyteller brought out a bucket of toys for everyone to play with. This apparently was the cue for the moms to start chatting while their children were happily distracted. I spent a few minutes helping Malachi pick out and play with toys, but I had come with another multiple mom and I wanted to chat, too. So I left him laying on his back on the floor in the middle of the room.

I'm probably being paranoid, but it seemed like I could feel, one by one, the mothers in that room asking themselves and each other a silent question: "What is wrong with that kid?"

They didn't act weird towards me or towards Malachi; they acted like everything was normal. But we all knew there was an elephant in the room and no one knew how to bring it up.

I've heard enough times by now that people take their cue about how to react to your child's disability from you. If you act like it's no big deal, they will too.

I guess I'm just not sure what the best way to "act like it's no big deal" is. If it truly is something that doesn't matter and isn't shameful, doesn't that mean you talk openly about it? And since people aren't going to ask you directly because they are worried about offending you, should you just be upfront and boldly answer their unspoken question? How do you do that in a way that doesn't seem self-conscious? How do you do that in a group situation?

Recently, I tried to "break" the news to a twin mom who was praising my courage for getting out by myself with the two of them. "Well," I laughed, pointing at Malachi, "he doesn't move very fast." She didn't laugh. She was just confused and unsure if it was something OK to laugh about.

Another time, a dad asked what was "up" with Malachi. Relieved, I launched into an explanation about his CP only to realize he wasn't asking about that at all.

Many other times, I've sat silently, wondering if they are wondering. I think about how I would want to be asked, but nothing sounds good. I don't envy their role any more than mine.

Does anybody really know? How exactly does one address the elephant in the room?