5 Things It’s Okay to Say (to a Person who uses a Wheelchair)

Recently, there have been a lot of posts on my newsfeed about what not to say: to single people, to married people, to parents, to kids, and-most recently- to people who use wheelchairs/have disabilities. And all that awareness is good.

Person-first language is important and necessary. It’s generally good to be sensitive and tactful with what we say, because language reveals where our emphasis and values fall in the scheme of things. However, I am sure it can be challenging to know exactly what to say, if all you’re ever confronted with is a list of “noes”.

best buds

Photo by M. E. Smith

So, for my part, I’d like to help. Because it’s good to know what to do. And because I don’t feel like being negative today:

5 Things It’s Okay to Say to a Person Who Uses a Wheelchair [This Person, at least]:

1. It’s okay to say, “Can I [or may I] help you?”

This is a perfectly natural and normal question to ask anyone if you think they could use a hand. So there’s nothing wrong with offering to help a person who uses a wheelchair. In fact, offering is infinitely preferred to assuming that help is needed, thereby pushing my wheelchair or otherwise assisting me without asking. If I say no,  I may need the exercise, the quiet time, or the opportunity to try to complete a task independently. But there are many times I accept help gratefully when offered.

2. It’s okay to say words like walk, run, stand, and so on:

You may invite me to go for a walk with you, to run to the store, to stand around and wait for something or someone with you. None of those phrases are offensive, none of them make me sad. It is precisely because I have a wheelchair that I can participate in the same activities you do. I don’t want to roll to the store with you, because a) that sounds deeply weird and b) it is no longer an activity we’re doing together. But a walk in the park with you? That sounds lovely.

3.  It’s okay to say, “My child has a question for you.”:

Children are inquisitive, and some of the most fascinating conversations I have had about disability have been with children [like the school kids who told me that everyone should be able to play on the playground, or the little girl who thought I was a Transformer]. I welcome questions and interaction from children, even if they seem perplexed or intimidated by my wheelchair at first. Something as simple as “Why do you use that?” is an opportunity for me to help a child be more aware of disability and how it affects people.  Not to mention it encourages a natural dialogue and helps to counter the Fear of Difference that kids sometimes struggle with.

[I would also encourage parents to think of age-appropriate ways to discuss disabilities with your children on your own time, in case you are in a setting where your child sees a person with a disability and is curious, but immediate conversation with a new person is impractical.]

4.  It’s okay to say, “Excuse Me”:

Too often, I have unknowingly been in someone’s path, and that person has attempted to squeeze by, inadvertently bumping my chair [or worse: moving my chair without my permission: gross].  Beyond that, I have been apologized to for being in someone else’s way more times than I can count. It is perfectly fine to say, “Excuse me” if the need arises. In fact, it’s downright polite. Your mom will be proud.

5. It’s okay to say, “Hi.”:

Sometimes, when we see people different from us, we look right at them. It’s okay, it happens to the best of us. I’ve gotten caught staring myself a time or two, I’m sure. When I notice someone staring at me, I say, “Hi!” to break the ice. It [hopefully] snaps the person staring out of it, in a kind way.

So next time you see a person in a wheelchair, if you don’t know what to say, just try hi. It eases the tension, and you might brighten someone’s day.

 

Advertisements

It Takes a Special Person [Guest Post by Mary Evelyn Smith]

The amazing Mary Evelyn Smith is a dear friend and fellow blogger over at What Do You Do, Dear?, where she writes-with plenty of candor, humor, and sass- about the joys and challenges of being a teacher, a wife, and a mom. We share a lot in common: our faith, many of our perspectives on life and people, and a devout appreciation for Arrested Development.  

Her family is one of my favorites, and her son, the Sim-Monster, is a sparkly fireball of Awesome.

You can read the blog here, like her on Facebook here, and Tweet her here.

It’s an honor to have her grace my corner of the Blogoverse! 

***

Image

In 2012 when my son was born with spina bifida, a birth defect of the spine, I joined the ranks of millions of people worldwide who love someone with a disability.  I’ve learned a lot in the year since—how to find the best wheelchair accessible parks, how to schedule multiple therapists, how to be a mom.  But more than that, I learned that I am “a special kind of person.”  At least that’s what people told me.

Why?  Because it takes a special kind of person to raise a child like my son.

I’ll be honest and say that at first, I really liked being a special kind of person.  Who wouldn’t?  It was nice.  It meant I was doing something good, something important and noble.  I am, after all, raising a child who has a disability.

But after a few months it didn’t sit so well anymore.  Being called a “special kind of person” began to make me uncomfortable.  And then I saw a photo on Facebook that made me realize why.  It was a picture of a teenage girl dressed for prom and standing beside her date—a boy with Down Syndrome.  The picture was charming, but it’s the comments that got to me:

“Honorable move, looks like she made his day!”

Someone at my school did the same this year. It made me proud of her because she’s absolutely beautiful and could’ve had anyone she wanted.”

 “That is very sweet of her…”

Turns out, she was a special kind of person just like me.  But it felt hurtful somehow.  I started wondering, “How would I feel if the boy in this photo was my son?”   Sixteen years from now, when my son goes to prom, will people applaud his date? Will they see her as a martyr? As a saint?

Image

Just what are we saying about people with disabilities when we glorify those who love and care for them?

Think of it this way:  I am married, I have a mother and father who love me, I am surrounded by friends but what if, time and again, I overheard snippets of conversations—words that praised them for the love and care they’ve given me?  Imagine whispers to my mother: “It takes a special kind of person to raise a kid like that.”  Or to my husband “You are such an inspiration— I don’t know if I could be with someone like her.”  These comments would say so much about my worth— my value.

Believe me, I am not diminishing my work as a mother.  I am not ignoring the extra time and energy it takes to carry a wheelchair up a flight of stairs.  I am not pretending that my son is just like everyone else.  But when we glorify his friends, or his mother, or his one-day prom date, we imply that he is less-than. We imply that those with disabilities are not equally lovable—that it takes someone “special” to muster up this kind of affection.  It seems we reveal our innermost bias—at least I think I did.

photo 1

The thing is, all love should be praised and all sacrifice too.  Loving someone is hard work—whether they’re a football player, a musician, or a wheelchair tennis star.  So call me hard working or call me a wonderful mother.  But if you call me a special kind of person I’ll probably nod and smile because I know a secret: if you knew my son, you’d love him too.

So, I guess, you’re a special kind of person—just like me.

Dear Simeon: Enjoy your new wheels! [a guest post for What Do You Do, Dear?]

This is a guest post for my friend Mary Evelyn’s amazing blog, What Do You Do, Dear?

Her son, one of my favorite humans, just got his first wheelchair. I wanted to write Sim a letter about what being in a wheelchair is like, so he and his mom can read it together later on when he starts to get older and ask questions.

Enjoy! And read the rest of her blog instantly.

**

Hi, Simeon!

I’m Beth. I’m friends with your Mom and Dad. I go to Church with your Uncle Joel and Aunt Sarah. I made you a video where I sang Happy Birthday to you when you turned one. I bet you could tell that I’m very, very silly. Most people figure it out right away.

Your Mom wrote a blog post about you getting your first wheelchair the other day. I watched that video she made, and it looks like you already know just what to do. Awesome! 

It is fun to use your chair to learn ways to do things your friends do that work for you. You want to zoom around the playground? You can. You want to twirl around in a circle for the heck of it? You can. If there’s something you want to do, there’s a way to figure out how you can do it. 

As a bigger kid who uses a wheelchair, too, I can tell you: having a wheelchair can be great. It helps you get around more easily by yourself. You can keep up better with your friends who are walking, running, or playing with you; especially if they are pushing your chair during playtime. You will meet a lot of great friends to have fun with. I have no doubt. 

But there are going to be some people you meet that won’t understand wheelchairs or what it is like to use one. They won’t understand that you have your own way of doing things that works for you. They might say that there is something wrong with you, that you’re sick, or that you can’t do something they can do. They might tease you. They might laugh at you. They might look at you funny. They might feel sorry for you. They might call you names. They will make choices that hurt your feelings. 

When I meet people who act like this, I am angry. I’m sad. If they just got to know me a little, they wouldn’t choose to say and do things like that! It’s okay to be upset when people hurt your feelings. Just do your best to remember the good friends and helpers all around you who love you very much. 

You may meet some other friends with wheelchairs, some who use crutches or a walker, some who have service dogs to help them with seeing or hearing or reaching things. Some of your friends might not have wheelchairs or walkers or crutches or service dogs, but there are things they will need help with, too.

We can all help each other, we can all be friends with each other. We can all learn from each other. There are two things we should always remember to say, “Thanks for helping me!” and “What can I do to help you?” Helping each other makes us all better friends in the long run. 

Being in a wheelchair does make us different from a lot of our friends. Feeling like you’re different can be scary. But it is nothing to be scared of or sad about. God makes each one of us special. There is only one me, there is only one you. All of our friends are special, too. We are all different from one another. And that’s just it. Because no two of us are alike, everyone is fabulous, everyone is wonderful; everyone is fantastic. 

So, keep your chin up, Sim. Keep on rolling. Keep on being fabulous, fantastic you, no matter what. 

Zoom zoom. 

With Lots of Love, 
Your friend, 
Beth

Statue of Limitations

I haven’t written in a while. Life has been getting in the way of my art these days. Work, bills, stress, housekeeping. All necessary, and for all I am thankful as a means to realizing the more independent life I have so long fought for. . . But boy-oh-boy has all this maturity made me an unreliable, frustrated artist.

Since when did Leonard Cohen ever write about forgetting to check his mail? Is there a song on Pet Sounds about paying your light bill? I don’t think so.Clearly I have been lacking in perspective. In my head, my life and the things in it have been nothing to write home [or the Internet] about.

Until I came across an article featuring an interview with Anna Eleanor Roosevelt, the granddaughter of the coolest [and most differently-abled] POTUS ever: FDR. In it, she discusses the FDR Memorial, and how she, some members of her family, and [self-] advocates within the disability community, fought [successfully] to have a statue that features FDR in a wheelchair added to the memorial. Since its addition, it remains the most photographed spot on the site. 

 

Although FDR did have misgivings about making his disability a public matter, the fact remains that all of his major life accomplishments, including all 4 of his terms as President, were realized after his disability became a prominent part of his life.

The fact that a member of his family recognizes and celebrates this is to be commended. While life with a disability isn’t always a picnic, disabilities should never be ignored. 

Recently, I was having dinner with friends when one of them said “We don’t really see your disability, we just see you”. I know what she meant: it’s not her primary focus. It isn’t the first thing she thinks of when she sees me. It’s not like she introduces me as “my friend Beth in the wheelchair”, or has me stored in her phone as “Wheelchair Beth”. All that I can appreciate.

But to see my disability should be to acknowledge its existence and to affirm that all parts of me make me who I am. I do not exist in a vaccum apart from my limitations, I exist alongside them. There is nothing about my differences that I am not constantly experiencing with the other parts of myself.

 We don’t live in Avatar [which you know I’m thankful for]. Life gets better when we make the most of it and keep moving forward, not when we trade up for a pair of Sea Legs. The more we engage in dialogue about disability and difference, the more awareness we will have of one another. The more awareness, the more empathy. And the more empathy, the more strength and equity as a society.

So, if there is ever a monument to me, put my clunky gold-silver-or-bronze self in a wheelchair. See me as I am.

And make sure I don’t look creepy.

entitlement

A number of people have noticed the title of this blog, which is of course based on signs like this one. i guess i'm toast.

Signs reading “In Case of Fire, [Do Not Use Elevator], Use Stairs”are placed near the button panel for every elevator, often at a spot where someone with a wheelchair would be seeing it at eye level. I was asked this morning by one of my friends what a person in a wheelchair is supposed to do in a fire-all-over-the-place kind of situation.

Not wanting to be ill-informed, I researched it on the Internet for about 4 minutes.

  1. As I suspected, using an elevator in a fire is kind of like asking the fire to give you a big hug. I wouldn’t recommend this.
  2. What you are supposed to do- in a respecting regulations kind of way- is wait in an “area of refuge” which is supposed to be a fire-safe area of the building: these include operating rooms, areas in stairwells, and control rooms in nuclear power stations, to name a few.
  3. Another option, and the one I prefer, is the ask-a-strapping-young-someone-to-pick-you-up-and-get-you-the-heck-out-of-there approach. Thats the technical name for it, anyway.
  • I first became acquainted with this method in high school. Our building had 4 stories, and my principal thought it was pretty bogus to leave me at the stairwell with my fingers crossed. So in each of my classes, I had a little team of people that would help get me and my chair out of the building in the event of a buncha, buncha flames wanting to engulf me.

Yes, yes, I know, you’re saying to yourself, but where does the title of your blog come from?

As many -if not all- of you know, I use a wheelchair because of cerebral palsy. Honestly, I would probably have to Wikipedia my own disability to explain it to your satisfaction. But, off the cuff, I can tell you that I have brain damage as a result of lack of oxygen to my brain, and that this could have occured at a variety of points before, after, or during the birth process.

Life with a disability is always a challenge- and always a lesson in irony, humor, patience, and civil disobedience. But that isn’t exclusive to my life or my circumstances. I know all of us face challenges, and all of us have to choose to laugh to keep from crying on a regular basis. And every single one of us, for one reason or another, has really wanted to stick it to the man.

That’s why In Case of Fire, Use Stairs seemed like the perfect title for my attempt to reach the world through chronicling my life and my perspective, because life is what it is. Sometimes you wait. Sometimes you’re trying to survive and not get burned. Sometimes you’re helping someone else take a breath. Sometimes you leap and hit all the bumps on the way down. But you have to keep going to survive- and keep a smile on your face while you do it- even if your tongue is placed firmly in cheek while you do so.

I have written almost all my life, and have always wanted to reach others through writing in a way that could inspire them and stir them, certainly- but I would be remiss if I didn’t also lace everything I created with humor. It’s dark and troubling to picture me at the stairwell, crossing my heart and waiting for fireman Joe. But it makes me smile. Because there are so many moments in my life where it feels like the walls are closing in- or burning down- around me. But I’ve always made it out. So, when things heat up for you, I encourage you to follow these three time-honored steps: Stop. Drop. And Rock n’ Roll.