Sunday, April 30, 2006

"Blogging Against Disablism"---Crippled Communication

[Ed. note: Today has been designated "Blogging Against Disablism Day", and I have joined the bandwagon. However, I believe that the idea came from the UK, and they tend to say things a little differently across the pond. "Disablism" and "Disability" can be used interchangeably, it seems. I can't find a definition for it. Check out Diary of a Goldfish for more info.]

***

Scenario:

Mary walks from her van to the front doors of the department store, pushing her 4-year-old son in his wheelchair. She has to buy him an Easter outfit, but he's hard to buy for, so she may have to look for a while to find something that fits him just right. Thankfully, she has the whole day to look--just her and him, enjoying an almost carefree day. They only have to accomplish this one thing, and then she's going to surprise him with a shake at McDonald's. He can't eat anything else, but he loves this little treat in spite of that.

She quickly realizes that she's not the only one shopping for an Easter outfit today. The store seems mobbed. Filled with Mothers and Fathers, strollers with toddlers, sulking teenagers. Her heart sinks. She thought she was doing this before anyone else would want to. She hates taking him to places where there are crowds. Besides, it's not the weekend! Oh, but it's a school holiday. She wished she'd remembered that ahead of time.

The man ahead of her at the front door was kind enough to hold it open for her. Perhaps today won't be as irritating as she imagines. But her optimism is crushed just as she arrives in the children's department.

The stares.

So many of them. Little children gawking and not even blinking. She quickly tries to delve into a rack of clothes, being careful to point his chair to where there are less people, less staring. It's only a matter of time before she hears it:

"Mommy? What's wrong with that boy?"

"Don't stare Johnnie, it's not polite...."

But he continues to stare, because his mother is too preoccupied to do anything about it. Mary decides it's best to move on to another rack. Maybe near the back? Hmmmm, they seem to have some nice dresses there.....maybe I'll go look at them until they leave.

And they do leave. But they are replaced by yet more hurried mothers with impolite children. She can't get away from it, and yet she's upset with herself for not realizing that this happens and she probably should've learned from last year that she shouldn't take him out with her. She just can't handle the staring, the comments, the whispers and guarded glances.

He's not a freak! She wants to yell. He's a wonderful little boy with feelings just like you! But she's knows it's no use. They can't see past his contorted form and seemingly vacant eyes. SHE knows different, but how could they understand?

She didn't even find him something before it happened. The straw that broke the camel's back.

A woman, perhaps in her mid-twenties, notices her wheelbound son and decides to come over to her. This doesn't happen to Mary very often, but she panics everytime it does. What are they going to say? Do I know her from somewhere? Oh, I hope I know her and she just wants to talk about high school or something!

"Hi! I was just noticing your little boy. He's so cute! What's his name?"

Mary sees right through the smokescreen, but plays along despite her gritted teeth and plastic smile. "His name is Justin. He's four."

"OH! I have a son who's four! He's home with his Daddy today, though. I don't mean to pry, but I was wondering why Justin's in a wheelchair?" the woman says with a smile. She bends down to smile at Justin at his level. And then looks up to Mary for the answer.

Mary, by this time, is aghast at the woman's rudeness. Why should I tell you, a complete stranger, anything? Do you really want me to tell you? How long do you have, lady? His medical history is long and complicated, and a short answer is hard to come by. So she comes up with something:

"There's a bunch of reasons, but mainly CP. Ummm, I have to go now. Nice, um, meeting you."

She turns his chair quickly in the opposite direction, not looking back to see the woman wave and say goodbye to her child.

Mary quickly decides that taking Justin out today was a big mistake. She promptly leaves the store and loads him up. Instead of going to McDonalds and letting him see all the bright colors, she resigns to going through the drive-thru and then straight home.

She'll have to get that outfit another day. By herself.

***

Even though this story is fictional, it is based on actual, everyday occurances. Here, in the U.S., I find it is especially disturbing. Mainly because we have the knowledge, the ability, and the wherewithal to change it.

The problem is communication. I think our country has done a fairly good job at making concessions for those who have disabilities in general. There are wheelchair ramps and elevators and large bathroom stalls everywhere. Social services may still be lacking in some areas, but not all, and the common people can do something to make that better through law. But it's the lack of communication---the one thing that no President, dictator, or judge can alter in spite of all their power---THIS is what needs to change.

Dialogue. We need to have dialogue. Simple, respectful interchanges between everyday people. People who aren't ashamed or stressed out by the disabling condition they live with. People who are willing to train their children (and themselves) that people who look or act different are not circus side shows. With these type changes, a scene like described earlier would be all-but-nonexistant.

Doctors may have to follow privacy laws, but private citizens don't. Why is it so hard for us to discuss these things? It's not as if we as humans could change our situation. I could no more keep Michaela from having an abnormal brain as you could keep yourself from having a normal one. So why should I mind if you are curious as to why she acts that way?

A lot of times curiosity is spurned by an insecurity about something. People don't yet feel comfortable with others who act or look different than themselves. But this will never change until those who live with the disability can feel comfortable with their own situation. Once that happens, we can then begin to knock down the walls of silence and indifference. We can begin to realize that abnormal is normal in humanity, and that it's not something to be ashamed of or ignorant about.

Once we, as a society, are not shy about what makes us different and discuss those things as if they were normal, then curiosity will start to subside. More of the general public will be educated. They will not need to ask. They will not be afraid of that gentleman who's drooling in his wheelchair. They will say hello to him as he passes by instead of just gawking at him. Or trying to be "polite" by ignoring him. Since when is ignoring people polite? Yes, people don't like to be stared at, but they don't like to be treated as a leper, either.

It's a two-way street, this communication I'm talking about. And it's the major reason why disability is such a stigma in our society. We need to initiate it--those of us dealing with handicaps, and those of us who aren't. But I dare say that the ones who are, carry the heavier burden. We are the ones who have to let others know that we're OK talking about it. And if we're not--then we need to comes to terms with our situation. And realize that almost everyone is touched by disability.

It's all part of being human. But lack of casual dialogue cripples our fight to mainstream those with disabilities. Pun intended.

***

Alternate Scenario:

Mary walks from her van to the front doors of the department store, pushing her 4-year-old son in his wheelchair. She has to buy him an Easter outfit, but he's hard to buy for, so she may have to look for a while to find something that fits him just right. Thankfully, she has the whole day to look--just her and him, enjoying an almost carefree day. They only have to accomplish this one thing, and then she's going to surprise him with a shake at McDonald's. He can't eat anything else, but he loves this little treat in spite of that.

She quickly realizes that she's not the only one shopping for an Easter outfit today. The store seems mobbed. Filled with Mothers and Fathers, strollers with toddlers, sulking teenagers. Her heart sinks. She thought she was doing this before anyone else would want to. She would've brought his big-kid stroller instead; if she knew there would be a crowd. The wheelchair can be difficult to maneuver. Oh well. Must be a day off from school today.

She beelines for the children's department, hoping to find just the right outfit. One rack catches her eye, and as she pushes the chair in that direction, she notices something:

The stares.

So many of them. Little children gawking and not even blinking. She quickly tries to delve into a rack of clothes, deciding to point his chair to where there are less people, less staring. It's only a matter of time before she hears it:

"Mommy? What's wrong with that boy?"

His mother, absorbed in her search, stops and bends down to see what her son is talking about. "Wha? Oh! Johnnie, lets go say hi. That little boy looks like he's your age."

The mother and her child come closer and all-but-ignore Mary, smiling at her, but choosing instead to focus on her son and say a few words. After their little interchange, the mother smiles at her again and tells her that they better go and get their shopping done quickly. As they leave, the mother tells her son to wave and say good-bye to Mary's, which he dutifully does while skipping down the aisle.

Unfortunately, Mary can't seem to find something that catches her eye. "Oh, well", she thinks. "I have all day to find something anyway." As she turns to leave, she notices yet another person looking at her son. This time it's a woman and not a child. Mary pretends not to notice the woman and continues on her merry way. However, the woman stops considering the garment on the rack and heads in Mary's direction.

At first Mary wonders, "Do I know her? Did we go to high school together or something?" But soon realizes that, no, this woman is a complete stranger. Mary stops, and looks around her to see if she dropped something, prompting the woman to come and alert her. But she hasn't dropped anything as far as she can tell.

"Hi! I was just noticing your little boy. He's so cute! What's his name?"

Mary returns the woman's warm smile."His name is Justin. He just turned four last week. Didn't you sweetie?" Instead of waiting for a reply that will never come, she turns her attention to the woman. "Do you have any children?"

"Yes! I have a son who's four! He's home with his Daddy today, though. I don't mean to pry, but I was wondering why Justin's in a wheelchair?" the woman says with a smile. She bends down to smile at Justin at his level. And then looks up to Mary for the answer.

Mary, contemplates how to best answer this question without taking up too much of her time. His medical history is long and complicated, and a short answer is hard to come by. So she comes up with something:

"There's a bunch of different reasons, but mainly Cerebral Palsy. He also deals with spasticity, so he can't move himself very well."

"Wow. I've never heard of that. Is he in pain?"

"Sometimes. But I think today is a good day. Right, Justin? CP keeps his nerves from sending the right signals to make his muscles move. And spasticity keeps his muscles very tight and unable to relax. Right now, he's on a medication that helps him with that, so he's having some really good days and moving more."

"That's really great! I'm very glad to meet you, Justin. It looks like Mommy's taking great care of you. I'm gonna go now, but you have a fun day with your Mom." The stranger gives him a big smile and a wave. She thanks Mary for sharing her time and information before she heads to another department.

Mary heads out too. But she figures it's getting close to lunchtime, and a McDonald's shake is waiting for them--with Justin's name on it.


***


Communication--"Don't leave home without [being able to handle] it"

(It's your "Visa" to an easier day!)

10 comments:

JeniBeans said...

well put, my friend.

Rachel said...

Thanks for the "alternate scenerio" too. Thanks.

Attila The Mom said...

This was so great! I love the way you put the alternate scenarios.

Sometimes it's so confusing as to how to act/react in these types of situations.

Kudos! Fabulous post!

BEG said...

It's interesting. I have learned that the best approach I can take is to simply and completely explain to someone about my hearing aids, what I can/can't do, etc. I have found that most of the time people are curious/sympathtic, but have no idea how to ask or what to do. I can't get angry or exasperated about it. I especially take my time with children who come up to me or who ask about them. Maybe I get more opportunities about this, because I can pick up a child (makes it easier for me to talk with the young'uns) and when they try to play with my hearing aids, I calmly explain what it's all about, and the kids are very matter of fact and go on to other things -- and mum's sitting there embarrassed beyond belief at their kid, and I tell them I'm happy the child asked and explain myself.

Yes in many ways its quite tedious. And yes, I love it when the other person is matter of fact and so on. But the way I figure it, the more people lose their fear of "the other" the better off we all are.

I especially like it when I get a child to understand there's nothing wrong with being a little different...

Kelly said...

Great post - and I like your alternate to the ending better! ;) When I read the first story, I wasn't upset by the stares, but by the way the Justin's Mother handled it. Like you say, its a two way street.

Kim said...

I'm so glad you put up that alternate scenario!

Had a patient once, eleven years old, small for her age and with multiple disabilities. She was in my ER for an asthma exacerbation.

Dad had been through it all before, so I was talking to the child, who had spasticity issues and CP (among other things), and while the child could not speak, she smiled and let me take a blood pressure and generally let us get her settled.

The whole time I'm talking to her, I'm telling her what we are doing and how great she is going to feel and this child is interacting with me. With her eyes, as she was nonverbal, and a smile.

It wasn't until later that I found out this child had the mental abilities of a 12-month-old.

Huh?

I told her Dad that I had gotten the impression that his daughter was understanding much more than a 12-month old would.

Was she? I was talking to her like I would any eleven year old. It had been years since they had come to the 12-month conclusion.

The point is, I had no preconceived notions about what she could or could not understand, so I treated her with age-appropriate descriptions and conversation. No baby talk or anything like that. And I got the impression she was hearing me.

I wonder if I would have changed my approach had I known ahead of time that they felt she had a "12-month old mind".

So, to make a long story short...great post! : )

RaCeCat said...

Well put Kell... love you lots

ballastexistenz said...

I don't know...

One of the first things I can remember of being in public with my mom, is people asking my mother, about me, "What's wrong with her?"

Later on in life, I was really uncomfortable with the fact that it seemed like people thought they had a right to know everything about the way my brain and body functioned, and that my mother really would often describe it to people.

And now that I'm the one getting asked the questions, I just find it invasive and exhausting. It's not that I'm ashamed of who I am, it's that I wish there was some easy way of telling people that my body is not public property. It doesn't help that there's not really a simple explanation for any of the questions they ask, and that most of the quick answers breed more questions or misconceptions.

I'm very open about being autistic, I've got "Autistic Liberation Front" stickers on my wheelchair, but... being autistic too often means people think my life is public property, and their property. And pretty soon they're demanding my entire life story.

Which, as far as I'm concerned, is a pretty personal request. I mean, how many people ask complete strangers for the story of their life? I get asked for it on a regular basis.

So I'm thinking there's got to be some other way than just answering the questions.

Anonymous said...

Your blog made me smile because you just described my life. As a mom with a son in a chair, (he is now 7) I have experienced both scenarios, only you left out the part where I leave the store in tears. I have been tempted to put a sign on my back "Yes, it is a child in a wheelchair." Or "its a Zippy Quicky Custom Wheelchair." The worst are the people who feel obligated to tell me all the items the State will pay for, as if we won some lottery of benefits "did you know the State will buy you a van? Did you know the State will pay for an addition to your home?"
Any ideas for a snappy reply?

Kelly said...

Anonymous,

Try this:

"Yeah, the State does that---it's called an institution, and my son isn't gonna live in a State-supported home!"

That should send them on their way.

Nice to have you along for the ride....feel free to email me anytime!