LET'S CHANGE THE WAY WE TALK ABOUT DISABILITY

Just today I came across an article titled “Wheelchair Bound Boy Gets a Special School Bus Costume for Halloween” When I first read this, I was annoyed by two things.

1) None of my Halloween costumes were this dope when I was a kid. I mean… I was the tooth fairy one year which was pretty creative but it did not make the news. Umm hello dad… what do you have to say about that?

2) “Wheelchair bound” is not a way that I or many members of the disability community want to be described.

If you come across an article about someone in a wheelchair, chances are “wheelchair bound” is in the title. It is outdated and degrading and I’m not a fan. It makes me think of a helpless individual in a wheelchair who stares out the window all day.

I am not “bound” to my wheelchair. I am sitting on the couch using it as a foot rest as I type. Society has placed such a negative connotation on wheelchairs, making it seem like they are the limiting factor in the equation, when actually it’s the opposite.

My wheelchair is my freedom. It allows me to get out of bed in the morning and the ability to move through the world in a dignified way. Without it I would be unable to leave my house, go to work, go out in Wrigleyville, get my eyebrows done or travel the world. And unfortunately this is a reality for millions of people globally that do not have access to a wheelchair.

Don’t get me wrong, being a wheelchair user comes with a number of frustrations… I wish my chair was 10 pounds lighter and didn’t squeak like a mouse at times, but I am very fortunate for what it allows me to do.

I use a wheelchair and that is not something I can change. What we CAN change is society’s portrayal and perception of people with disabilities. Let’s give it a try…. shall we?

Instead of:

“A wheelchair bound girl, Shannon Kelly, traveled to 6 countries in one summer.”

Let’s say:

“World traveler, Shannon Kelly, visited 6 countries this summer in her wheelchair.”

The second sentence makes the story less about the wheelchair, and more about me. There are way more interesting things about me besides the fact that I’m a wheelchair user.

I’ll name a few:

  • I love the earth… who wants to go to an earthship with me?

  • I’m currently trying to convince my mom to let us have chickens in the backyard (it’s not going well)

  • I will always support Bernie Sanders and even tried to name our dog after him

  • If my eyebrows are not done, chances are I’m not having a good day

  • Panda Express is my guilty pleasure

Besides using more positive language in regards to describing wheelchair users, we also have a lot of work to do in order to make society more inclusive. Improving accessibility will go a long way in helping people with disabilities be seen as capable and independent individuals.

We deserve equal access to things like:

  • Public transportation: Currently only 70% of Chicago’s CTA trains are accessible and the city has a plan to make them all accessible…. over the next 20 years.

  • Housing options: There are accessible housing options in the Chicago, but they are normally newly constructed, high rises which are extremely pricey. We deserve affordable housing that meets our needs.

  • Employment opportunities: While the Americans with Disabilities Act (ADA) prohibits companies to discriminate against applicants requesting reasonable accommodations, there is a very high unemployment rate among people with disabilities. The U.S. Bureau of Labor Statistics says that “18.7% of persons with a disability were employed, and in contrast, the employment-population ratio for those without a disability was 65.7%.”

  • and of course… social activities: I’ve faced many barriers when it comes to attending sporting events, concerts and just local bars. Being social and doing fun things is important! People with disabilities should not be excluded from this aspect of life.

Changing the face of disability in society is a pretty big undertaking… but luckily I don’t have to do it alone. The wheelchair community is united when it comes to this issue and is determined to show people what we are capable of.

Earlier this year, the Rollettes, a wheelchair dance team launched their “Be Boundless” campaign to celebrate our strengths as a community and to show the world we are not wheelchair bound. Hundreds of people shared their stories on social media with the hashtag #BeBoundless18.

If you’ve made it this far, thank you for reading! Please take what you've read and be an ally in helping people with disabilities thrive in society. Be mindful about the language you use to talk about disability in order to help us change our narrative into a more positive one.

Click here to learn more about the Be Boundless campaign.

Click here to donate to the Walkabout Foundation, which donates wheelchairs to people in developing countries.

Enjoy some photos of me living my best, boundless life :)

I TRIED ZUMBA IN A WHEELCHAIR

Exercise is good for you, I don’t think anyone is going to fight me on that.

I mean…who doesn’t remember this infamous Elle Woods quote?

But seriously it is. Healthline says it can help with weight loss, increase your energy levels, is good for your muscles and bones, can reduce your risk of chronic disease etc. Which is why I’ve been exercising since I was young. First with pediatric PT at Easter Seals DFVR, then at the adaptive “DRES” gym in college, and now with personal training at Right Fit. But all these places have something in common. They all have experience working with disabilities and in my case were always in one on one sessions with a trainer or therapist.

I always envied my able bodied friends’ abilities to go to a mainstream gym without getting stared at, to use all of the machines and join the large selection of fitness classes. One class in particular I’ve always longed to try is Zumba. I’ve seen people taking this class before, and was drawn to the high energy and the smiles on everyones faces as they moved along to up beat music.

The more I though about it, the more I wanted in. Just because a class hasn’t had a participant in a wheelchair before, doesn’t mean it’d impossible for me to join. It’s time for the fitness world to be more inclusive of people with all abilities. Besides… anyone who has been out with me in Wrigleyville before knows that I got moves ;)

I felt empowered. I was determined to push society’s boundaries and try out a Zumba class in a wheelchair. But I wasn’t ready to tackle this venture alone. And luckily I didn’t have to. I went to visit my friend Deb (who is also in a chair) in Fort Lauderdale and told her about my idea.

“We should take a Zumba class together,” I said nonchalantly.

“YES!” Deb replied, “I was just thinking that I wanted to get fit but I didn’t want to go alone.”

Our plan was in motion. There’s was no turning back now. We found a class at a local LA Fitness for later that week and decided to call them to give them a heads up that two chicks in chairs were going to roll in.

I made Deb call because as a typical millennial, I have a fear of talking on the phone.

“Hi, I was just calling about the Zumba class on Thursday night,” Deb said. “My friend and I are in wheelchairs and we wanted to come try it out.”

“Um… sorry, can you repeat that?” the man said nervously, (he sounded as though he thought we were pranking him).

Deb laughed and tried again, “My friend and I are in wheelchairs and we want to come do Zumba! We just wanted to call to let you know and make sure we’ll be able to participate.”

“Well we have an elevator to get up to the studios and it is all flat once you get up there,” he responded.

Not exactly the response we were looking for, but we thanked him and told him we would see him Thursday.

When Thursday night rolled around, I had a moment of panic. What did I get myself into? I tried to convince Deb that we should go a different day but she wasn’t having it. We made our way inside and up to the studio where a room full of people were already warming up to “Wake Me Up Before You Go-Go”. We got a few stares as we rolled in and stayed toward the back to draw less attention to ourselves.

We began to move to the music and followed the instructors movements with our arms. It was all going pretty well until people began to move up/down and side to side on the floor, and when they did 360 degree turns. It was difficult for us to do the dance moves while also moving our chairs, so for the most part we stayed in one place when this happened. There were also times when a lot of the moves were solely leg movements. This was a bit uncomfortable, but we tried our best to adapt the movements to what we could do with our arms and just had fun with it.

About half way through the class we were summoned to the front of the studio. This made me feel even more vulnerable especially when Deb left the class for 10 minutes to go to the bathroom and get water. But I persevered nonetheless and kept moving until the end.

After the class we got a lot of high fives and talked to a few of the other attendees. They were curious about our stories/what made us decide to come and said we did a good job for our first time.

zumba.jpg

This is the reason why I put myself in uncomfortable and sometimes scary situations. It is important for people to see disabled people in society doing everyday things and living fulfilling lives. Society isn’t fully accessible or accepting towards disabled people yet, and the only thing that will change that is exposure. We need to be present in the workforce, on public transportation and heck, in Zumba classes to let the world know that we are worthy of equal opportunities. And hopefully us being in that class will have an impact on how the attendees view and treat disabled people in the future.

We left the class on a high. Deb was so motivated that she joined the gym and signed up for a personal training session for the next day. More to come on that later… :)

The experience overall was very motivating. It not only gave us more confidence in our abilities, but it also (hopefully) changed the mindset that the class had on disability. Did we change the world? No. But did we make an impact on disability inclusion in fitness? Yes. Baby steps, folks.