This week, we will be featuring an extraordinary young woman named Wendy Lu on KIT’s Inclusion Potluck. We are thrilled to share Wendy’s story with all of you. Wendy, who uses a tracheostomy tube due to vocal cord paralysis, spent her summer in China. She had an incredible experience that she was kind enough to share with us. We hope it is as eye-opening for all of you as it was for us!
When I told my parents earlier this year that I had been selected as a summer intern at a media company in China, they were split on the decision about whether or not to let me go. Working and traveling abroad may seem like the quintessential opportunity for a 21-year-old about to graduate from college, but for people with disabilities, it’s not easy.
I was born with vocal cord paralysis, and I have had to wear a tracheostomy tube that allows me to breathe properly for my whole life. Blessed as I am with a loving family, living with a trach tube has been challenging, both health-wise and socially. I grew up having to endure awkward questions from friends, teachers, and even strangers on the street. Sleepovers and school field trips were almost always a no-no, as it was required for me to have a parent or nurse with me at all times – literally. Though I’d visited China in the past for brief periods of time, my parents and I knew that living in another country with a completely different culture was bound to pose its own challenges as well.
So did I end up taking a plane to China? Yes, I did, and it’s where I am now. I’m living in Beijing on my own (though my parents often visit when they’re not with our relatives in Shanghai), and my office is just a five-minute walk away.
Here is what I’ve learned in the past month:
1) You can never bring too many medical supplies (unless your suitcase exceeds the maximum weight limit – then, bring two suitcases).
2) Health always, always comes first. If you’re not healthy and taking care of yourself (both mentally and physically), then you can’t really do much of anything else, at least not well.
3) There are two types of inclusion that I’ve been exposed to since being here: physical accessibility and social inclusion. China does relatively well with providing the first type (as far as I’ve seen), but not so well with the second type.
In many of the places I’ve stayed since coming to Beijing, one of the most exciting things I’ve seen have been the elevators. Oftentimes, there are two sets of elevator button panels: the typical vertical panel that faces the front of the elevator, and a second horizontal panel on the side of the elevator for people with physical disabilities who aren’t able to reach the first panel (e.g. people who use wheelchairs). I was absolutely pleased when I saw one of those horizontal elevator panels for the first time; I had never seen one before, even back home in the United States.
Many public facilities, shopping malls and corporate buildings also provide ramps. Even though I wouldn’t need these particular accommodations for myself, it excited me that global efforts were being made to not only break down physical barriers for people with disabilities, but to be mindful of their perspectives and alternative lifestyles.
Unfortunately, this mindfulness is rarely found in the general public. While I love being in China, it’s frustrating when there are people I come across every day who can’t help but stare at me everywhere I go – the streets, the restaurants, the grocery store – and don’t realize how rude they’re being. A receptionist actually pinched her throat and made assumptions about my life and the hardships she believed I’d experienced, even when I refuted them. I’ve even had one person ask to take a picture of my trach tube (not me, just the tube). And it’s not just physical disabilities. Mental illnesses are typically seen as shameful and embarrassing, rather than conditions that need to be treated with care and support.
The lack of social inclusion can sometimes be disappointing and even enraging. But for every time that I have a negative experience, I remind myself of an encounter I had with a shopkeeper that completely changed my perspective about people who stare or ask questions. The shopkeeper thought my tracheostomy tube was a fan that spun around and kept me cool during the summer. A fan! It was then that I realized many of these people are curious and just don’t know any better. Some don’t even see it as a medical device. Although this doesn’t justify ignorance, tactlessness or rude behavior, cultural (and individual) differences can often account for miscommunication and seemingly awkward situations – both at home and abroad.
This is why disability awareness and inclusion are so important. As a person with a disability, I don’t mind anymore when people ask questions. In fact, I encourage it because then I’m able to help them learn what it is like for someone else to live with an alternative lifestyle. My disability is a part of my identity, but it doesn’t define who I am. When people ask me what’s around my neck, I answer their question – but then I tell them a little bit more about myself. Something beyond my disability that makes me different from everyone else. I tell them that I love to write stories, that my family celebrates both Chinese New Year and Christmas, and that I make a mean macaroni and cheese. A person’s character is what matters most, after all.
–Written by Wendy Lu, a reporter, creative writer, disabilities advocate, and recent graduate of the University of North Carolina. Check out her blog here!
Kids Included Together (KIT) is a non-profit located in San Diego, CA and Washington, DC. We help make the world a more inclusive place by providing live and online training to people who work with kids. We teach strategies, accommodations and best practices to include kids with and without disabilities in before & after school programs. Inclusive environments create stronger communities. Learn more about our work at www.KITonline.org.