By Kari Storm

Although Shelby Kennedy is content and happy at her current job, she is still not giving up on her dream of continuing to pursue Asian Studies.

Shelby currently works as a Program Specialist for the U.S. Department of Veterans Affairs.

She works on the Human Resources team doing strategic workforce planning. This entails looking at the workforce supply they currently have and forecasting what they need, and identifying efficiencies and places where they can hire people or retrain people to do the best work possible.

She supports the team by doing the day to day administrative tasks such as timecards, helping people when they need to request special types of leave, notetaking during meetings, and budgeting.

She also conducts research. When her team is getting ready to start a project, she researches things like the policy that already exists in the agency, and then delivers a written product that gives the team a place to start from.

She maintains the team’s website and does correspondence, as well.

Shelby said her favorite part of her job is the website maintenance. One of her favorite projects was learning how to use SharePoint and the website building tools inside SharePoint. Every month during the project, the team she worked on put on a live webinar, showing people how to use a piece of the HR data analysis tool that they manage. It showed first-time users how to get started building reports.

Shelby’s task was taking those videos and putting chapters into them, like when you use YouTube you can click to certain parts of the video based on how it was indexed. So, she indexed the videos and uploaded them to SharePoint. The project lasted about two years, and she said it was really fun to do.

Shelby said the most challenging part of her job is anticipating what’s coming down the pipeline as far as policy changes and process changes. She said things can change pretty quickly.

Shelby has a Bachelor’s Degree in Asian Studies and an Associate’s Degree in Music.

She said she decided to major in Asian Studies because she always loved Asia, ever since she was a kid. When she was in high school, she wanted to go to an Asian restaurant for her high school graduation celebration. She said she’s always felt connected to Asia.

When Shelby got to college, she met some friends who were into Japanese animation, and she said she fell in love with it. She and her friends spent a lot of time learning Japanese and talking about Japan.

Shelby left college for a while, but when she went back, she got her Associate’s Degree in Music. She always loved music, but she felt really drawn to Asia, still. So, for her Bachelor’s Degree, she decided to major in Asian Studies.

She loved her college experience and got to go to Japan. At the time, Shelby was thinking she would go on to get a Master’s Degree in International Studies, but she said, to be honest with the Moebius community, she didn’t end up doing that because she said she felt nervous and intimidated about chasing her dreams. She said she didn’t push as hard as she should have to continue her education and it’s something she regrets.

Shelby still studies Japanese, though, and hasn’t given up on her dream. She lives in Washington, D.C., where she says there are a lot of opportunities to immerse herself in Asian culture. She goes to events at the Japanese Embassy, local Japanese grocery stores, and cultural events. She said someday she does hope to reconnect more with that passion and get back to studying Japanese more, and go back to Japan.

Even though her current job is different from what she thought she’d be doing, Shelby said she really loves her job. And, she said her dream to go back to school isn’t dead, it’s just latent right now.

Shelby said navigating the job search/interviewing process with Moebius went okay at times, and not great at times. But, she said as she grew up, she learned you can only control how you react to situations, not what other people are going to do or how they will react.

When she was in her late teens/early 20s, she worked at Sam Goody. When she interviewed for that job, she said her manager was really cool and didn’t care one bit about Shelby’s disability. She said it was one of the best interview experiences she had.

After that, she had a few really bad interview experiences. One man interviewing her said, “I’m sorry, honey – there’s nothing you can do here.” She said she was embarrassed for him.

Shelby said as she got older she became more intuitive about what interviewers seemed wary vs okay about her.

She said when she walks into an interview she tends to put on her newscaster voice and pretend as best she can that she’s not nervous. She also said she asks the interviewer, “How are you?” and she said that tends to disarm them.

She said people (including interviewers) tend to assume she’s mentally disabled because she looks different. So, she said, by asking interviewers “how are you” demonstrates you’re thinking about them and is a marker of good intelligence.

Shelby said as she got older, at the end of the interview, if it hadn’t come up, she’d discuss her Moebius syndrome. She’d say something like, “I know I look different. However, that will not affect how I perform the duties of the job. I’m happy to answer questions. But I’m good leaving it there if that’s your level of comfort.”

Shelby’s advice for people with Moebius who are navigating the job search / interviewing process is to go in with enthusiasm. To combat nervousness, show how interested you are in the job. Research the company before you go to the interview. If possible, research the people / team you’re going to be working with / interviewing with. Looking on LinkedIn for that info can be helpful.

Practice interviewing with someone before you go. You can even use AI, like Amazon’s Claude AI for interviewing practice. Know your strengths and weaknesses. Also, take a portfolio of work samples, if applicable.

Shelby said it’s less about your Moebius and more about showing them what you can do and that you’re capable and have already done the work they’re wanting you to do.

Growing up with Moebius was not easy for Shelby. She felt extremely lucky to have a family that loved and supported her, though. She got teased a lot. Middle school was rough, but high school got a little easier, and she made some friends she is still friends with now, who loved her regardless of the Moebius.

She had a lot of physical and speech therapy throughout her childhood to speak better and to learn how to do what everyone else was doing (physically), just in a different way.

Her parents made her introduce herself to her classmates in middle and high school. Even though that was very hard for her, she said it helped her learn how to present herself to people and advocate for herself

Shelby’s advice to her younger self is that life is supposed to be fun. It’s so easy to get caught up in your own head and be self-conscious about what you look like. But, life is short. Give yourself that space to love yourself.

She said it hasn’t been until the past few years that she can walk by a group of people and if they are laughing, not assume they are laughing at her.

When she was younger she had a really, really rough time dealing with getting stared at and bullied. To the point where her parents put her in therapy to help her deal with it.

She said, for her, therapy didn’t help quite as much, but she said it was interesting to at least talk about what was going on.

She said, to be really honest, she had a few just really dark years when she was a teenager. She said what helped was getting to high school and also taking dance. Her dance teacher was extremely supportive of her. Shelby didn’t know how to navigate the stares and bullying when she was in middle school, but going to high school and meeting her new friends and dance helped.

Shelby said she does still get stared at to this day and it does still affect her. She said during the past few years what’s been helping was more education and advocacy in society. She has noticed people are less judgmental than they used to be. When she goes out now, into new situations, she said people don’t tend to treat her much differently. They might look at her a little bit, but they’re not like they used to be.

Shelby’s advice for people with Moebius who are getting stared at / bullied is feel your feelings. Try your best not to respond negatively.

She said sometimes our culture says it’s ok to be nasty back if someone is mean to you. She does understand that, but responding like that doesn’t really change the person who’s bullying you’s behavior. It just makes them angry and makes them not like you. Even if them not liking you doesn’t bother you, you set them up to do the same thing next time to someone else (still being a bully) and maybe they’ll do it even worse next time.

She said, either just leave them alone, or find a way to educate them that what they’ve done is not very nice and also to let them know more about Moebius and that you deserve to be respected. Let them know you are a person. Shelby discourages people from being rude to the person who’s bullying.

Shelby said her philosophy and what’s helped her heal is to make everyone you encounter’s lives better. You’ll feel better if you’ve tried to make every person that comes into your life as happy as they can be. Spreading happiness is a really powerful tool for self-healing.

Shelby said she sometimes finds herself judging or potentially misperceiving the looks other people have on their faces, and making assumptions. With Shelby having Moebius, she said it’s a good reminder that people’s faces might not actually say what they are actually thinking or feeling.

Due to Moebius, Shelby was born with two upper limb differences. Shelby lives on her own and can do pretty much whatever anyone else can, just sometimes in a different way. She did get her learner’s permit, but discovered driving just wasn’t for her. She was wary of her depth perception and reaction time.

There are some little things she has difficulty doing, like opening certain packets/packages (like a granola bar). She can’t tie her shoes, so she doesn’t wear shoes with ties. Anything that requires an opposable thumb, like tying a garbage bag, she isn’t able to do. She doesn’t use any special tools, but has a jar opener to open jars. Certain things she has adapted to. For example, her dad put a key ring on her zippers so she’s able to pull it and zip.

Shelby has run into people over-praising her for being able to do the things she can, with her limb differences. She said some people have really low expectations for what people with disabilities can do.

If people with Moebius run into someone who underestimates them, Shelby suggested they say something like, “I know you’re trying to be kind, however, you should expect that people with disabilities will go out and do the things that everyone else does. You should expect to see all kinds of different people when you’re out and about. When you make comments like that, it shows people that you think of them as different from you or not capable of doing the things that average people can do.”

Shelby is the Regional Coordinator for the Maryland/Washington, D.C. area for the Moebius Syndrome Foundation. She had previously enjoyed getting to plan some Happy Hours and after-work events at her current job, so she thought it would be a fun fit to be able to plan events for the Moebius community.

Her band will be playing a special event in May where any donations they get will be going to the Moebius Syndrome Foundation.

Shelby has attended about 6-8 Moebius Syndrome Foundation conferences.

Her first conference was in 2002 in Chicago. She said it was overwhelming…“When you get to your first conference, you’ve never met anyone who looks like you in your entire life, and you get into this hotel lobby, and you start looking around at *all* these people who look just like you. You’ve got all different ages. You’ve got little babies, you’ve got kids, you’ve got teenagers and adults. Everyone simultaneously looks so different and also so similar.”

She said she felt pretty shaken the whole time during her first conference. But, she said she was able to meet another woman who had the same arms as her, and they became good friends. So, she thought that was really cool.

Then the next conferences were a little easier and she was able to relax more. She said of the people she met at the conferences, “You want them and need them for the rest of your life. We all need to stick together and learn from each other and take care of each other. That first one (conference) is always intimidating, but once you relax and just let yourself breathe, you will see how critical it is for you to be going to these things and to stay in touch with these amazing people. “

Shelby wants the Moebius community to know how beautiful they are. She said Moebius is a superpower and causes us to look at life differently. We have a really different perspective from a lot of people. Be strong and own who you are. Don’t be afraid to live life boldly. She wanted to remind people how powerful they are and how amazing life can be when we live fully.