Monday, January 14, 2019

May the Force be with you. (Or at least some common sense.)

We arrived early to the exhibition hall to pick up tickets, lanyards, and an accessibility guide map. The hall was already teeming with all manner of Star Wars greatness -- banners, droids on display, and so many people wearing every imaginable Star Wars tee-shirt.  My boys were there for their birthday trip along with two of their best friends. I was simply escorting them through the ticket-purchase process.

A gentleman rolled up to them in his own wheelchair and immediately started talking to the boys about how to best navigate the expo -- not wheelchair-wise, FAN-wise! There was no awkwardness. There was no preface of wheelchair-comparison. These fans simply dove right into their conversations and never missed a beat. I guess the Force does that for you. :)


At the Star Wars Expo 2015


Last week, after I posted about the woman calling Mason deformed, a sweet friend asked what is appropriate to say to someone with an obvious disability. Her question came from a genuine heart wanting to grow her little people into caring big people and it has left me pondering all weekend.

My mind immediately went to interactions where the boys have met people who completely ignored the wheelchair and power sticks (crutches) they use. Sadly, I could only think of a handful of those instances:

Their best friends in Arizona (The ones who accompanied them to that Star Wars convention a few years back.) stand out the most. Those guys found the common ground faster than anyone before. They zeroed in on the things they had IN COMMON with my boys, rather than the things that make them different.

I thought about the night I gave Benjamin's friend a ride from an event on their college campus back to his apartment. The two college kids talked non-stop about some comic and how it was written.

I also thought about random interactions like the one on the bus at Walt Disney World earlier this month. A young girl seated beside Mason just began talking his ears off. She asked him a million questions and guess what, they were ALL about the parks. Not one about his power sticks.

Unfortunately, I can list far more times when the boys have been addressed in a condescending manner as if they didn't understand what was being said to them. Or worse, weren't addressed at all as if they were incapable of communication.

What in the world is the difference? Why are some people capable of striking up a conversation and never seeming to notice the wheelchair and some people can simply not see past it?

I am really not sure. I would like to think that those who can't see past it are uneducated or evil or some other equally horrific adjective. But I have known extremely-educated physicians, as well as some of the kindest people, be terrible at interacting with my boys. So it isn't that easy.

So short of distributing light sabers and you know, the force, maybe guidelines are in order:

1. Yes, it is as easy as just saying hi! But don't slow down your tone. Or raise your voice. Just say hello -- maybe even ask how they are doing. Benjamin and Mason -- and everyone with a disability -- are people, JUST LIKE YOU. How do you like to be greeted? It is probably safe to assume you can do the same with them.

2. If you are a mother with littles and you find them staring -- don't despair. Children are curious and if YOU react harshly, for the rest of their lives they will feel awkward when they encounter someone in a wheelchair. (And when you act like they are people JUST LIKE YOU....guess what?? So will your children!) Let them ask questions. When the boys were little, I would answer. But soon they took ownership of that and enjoy answering for themselves. I can guarantee you that they prefer being able to explain their disability to you trying to rush the child away from their earshot.

3. After your child's curiosity is satisfied, help them see things they might have in common. Benjamin has a Disney sticker on his chair -- you can point that out and tell your child that he likes Mickey Mouse! It is pretty easy to find common ground if you are raising boys -- start with Mickey, move on to Star Wars, or Super Heroes....and if you have girls, well they need to know Mickey, Star Wars, and superheroes too! Seriously, every person you meet with a disability has something in common with you. Find the things that make you most alike rather than linger on the differences.

4. Use common sense. Would you want yourself or your child described as deformed? Then that probably isn't a good adjective. (Because...say it with me now, my boys are JUST LIKE YOU!) If you wouldn't want your child described as whatever adjective you are considering using, then please for the love of all things good, don't use it on my boys.

5. People first language is important. But my boys don't mind being called disabled. They aren't big fans of special needs at 21....though that was fine when they were younger. The word handicap literally comes from cap-in-hand as in, the word comes from those with physical disabilities begging for money. Let's drop it from our vocabulary, please!

6. And my last guideline -- when in doubt, ask. Really.

Listen, we are full of grace over here. I have a tendency to ask for tables at restaurants something like this: "Hi! I have six people and one of my little guys is in a wheelchair so we will need something accessible."

Oh for the love. Benjamin hasn't been a "little guy" for a long time and yet....I just find it awkward and so I default to what I have said for years. So if you talk to us and don't just absolutely nail it -- we are still all good and full of love for you for trying. Just don't be the woman at Cate's soccer game a few years ago:

Little girl: "Mommy, why is that boy in a wheelchair?"

Mom, clearly agitated (and loud): "STOP STARING! HE IS BLIND!"

Hmm. She got so many things wrong here. All she had to say was, "Oh, wow, that chair looks cool! I don't know why he needs it but I bet it can go fast!" Or something along those lines.




Get out there and greet. 

We are serious.


Carol - The Blessings Counter

1 comments:

Beverly said...

I so love reading your blog, cause it helps me remember how to stay normal with everyone..i sometimes get a stroke pt who needs to learn to write, and holding knitting needles retrains the hand !!
My oldest brother was a polio survivor, so I get the societal reaction of people who have some kind of outside the normal box challenges.
Love you, come see me soon
Beverly Anglin owner SN