By Kari Storm

Amy Schuster absolutely loves her job, but said it comes with its challenges. 

Amy has a Bachelor’s Degree in Sociology (minor in Social Work), and works as a patron services associate at a library. She helps maintain library operations and assists patrons with things like checking out books, catalog inquiries, printing, technology issues, and providing readers advisory.

She said she absolutely loves being able to serve her community. She also loves that the library supports individuals from all different backgrounds and walks of life. She said being able to work at a facility that provides books, free resources and equipment and fosters a love of reading is a privilege. She also loves the staff she works with because they are so fun, compassionate and supportive.

As much as Amy enjoys her job, she said there are some challenging aspects of it. She thinks this will really resonate with a lot of people, especially those who are disabled. Just trying to keep up and juggle all the demands and expectations of the workplace, especially when everyone around you is able bodied is challenging. When you work at a slower pace (both mentally and physically) and you are expected to complete tasks in a timely manner, trying to keep up can build a lot of stress and anxiety. It’s hard not to beat yourself up when you didn’t get as much completed during the day that you wanted to. 

In many cases, Amy said her prosthetics, speech, and hearing impairment hinder her performance, which takes a toll on her. She is hard of hearing, so, normally, she has to ask others to repeat themselves or have them write something down for her, which is an added layer of inconvenience. She said there is just a lot of pressure to succeed, minimize mistakes, and be an example for others, especially newer employees. 

Amy said there are many days where she tries her hardest and wants to be helpful, but inadvertently ends up exacerbating a situation or not making the best decision, and she goes home that evening feeling like a failure, burden and paranoid. 

And she said, once in a while, you encounter people who are subtly ableist, question your authority and whom you have to assure that you are capable of doing your job. She said there was an incident she had recently where a patron she was speaking to over the phone made an assumption about her intelligence based on the sound of her voice. Even though the people around you have faith in you and trust you, Amy thinks it’s just ingrained in a lot of disabled individuals that we constantly need to “prove ourselves.”

Amy said sometimes, at the end of the day, it’s just a lot. However, you just have to lift yourself back up, remember that you are only human and that you are doing the best you can. Everyday is a new day. You will always have an opportunity to “wipe the slate clean.” Amy said, fortunately, her good days largely outnumber her bad days.

While she wouldn’t deem her job as “physically demanding,” because there is quite a bit of sitting involved, it does pose its challenges, like the amount of up and down movement it requires. 

There is a task she is assigned to on occasion that requires her to kneel down and get off the ground to fetch items or put items back. Because it is sometimes hard for her to stand for long periods of time, she often subconsciously kneels down on the ground more often than is needed just to relieve some discomfort for a moment. She realized later down the line that her prosthetics were actually a physical barrier to her getting a task completed within the time period she was assigned to it. 

Amy requested and was granted a reasonable accommodation, which gives her additional support with the physical demands of this task. The second half of the task requires her to sit down in the back office, which enables her to complete the rest of it on her own. 

Regarding whether or not to disclose her Moebius during job interviews, Amy said each one was different. Sometimes she would openly address that she had a rare neurological disorder called Moebius. Other times, she would mention that she had a speech impediment and prosthetics, but not mention the exact condition she had. She would always emphasize that these factors would not have much of an impact on her performance and that she was fully competent and capable of fulfilling all the tasks and duties that were assigned to her. 

Sometimes after being hired, she would acknowledge that she had Moebius syndrome but it’s not something she discusses frequently in the workplace. Usually, when the topic of Moebius is brought up during the interview, the hiring manager would say something like, “Thank you for sharing that with me.” But very rarely when she disclosed that did the hiring team proceed to press any concerns about it. She said she was usually treated like any other job candidate who was questioned about her skills and was given situational questions.

Amy said she did feel like having Moebius made the interview process more difficult. She said when any candidate walks into an interview, they want to do their best to leave a good first impression. When you know that during the interview, you will have trouble with your speech not being clear, stuttering or repeating words and maintaining the saliva that comes out when you speak, it makes interviews even more nerve-wracking. 

Plus, Amy said her information processing is a little bit slower than the average person’s, which makes it harder for her to formulate an answer on the spot. She’s often so overwhelmed with all these negative feelings that her brain just freezes and she can’t think. She said just the act of envisioning her past interviews and having to answer questions she didn’t know the answer to at the top of her head with eyes glued on you makes her nauseous. She gets very bad anxiety and stress before and during interviews, even when she tries to prep beforehand. 

Amy’s advice for others with Moebius navigating the interviewing process is, before the interview, find sample interview questions online and practice your answers. And, if you can, seek advice from a career counselor or job coach. 

Growing up, Amy said having Moebius did not prevent her from making friends, but she did face a lot of exclusion and was left out. Oftentimes, she wasn’t invited to social gatherings and would stand outside of clique circles secretly wishing they would let her join in. 

Many of her friends belonged to another group that she wasn’t very close with. So in a way, she always felt like an outsider looking in. Fortunately, she’s still close to a few of her friends that she grew up with. 

In retrospect, she feels like a lot of the people she went to school with may not have befriended her because they knew she had prosthetics and a type of facial paralysis and heard the way she spoke and how her voice sounded. They just didn’t want to be associated with that. 

Also, she thinks one of the challenges of growing up with Moebius was having a speech impediment. She said it’s hard when you are young and you have communication barriers because the people around you can’t always understand what you are saying. She was very self-conscious about many things, like eating. 

Since Amy was born missing most of my lower limbs, she always viewed her differences as “her normal” because it’s all she’s ever known. Over time, she said you just learn how to adapt with what you have been given. 

Prosthetics have given her the ability to walk independently and be fully mobile. She said she’s able to do most things. She can’t run, but she’s an expert when it comes to speed walking. 

Another thing she can’t do is drive. That is partially due to her prosthetics and also due to her eyesight and other factors. She considered learning to drive at one point in time but in the end, she really never had that yearning for it. She didn’t pursue it because she has always had access to reliable transportation, including walking, riding her bike, buses, shuttles, etc. She can pretty much get anywhere she needs or wants to go. 

Some things Amy has learned to do that people might be surprised by are ski and climb a ladder. 

When Amy was younger, seeing others stare at her really bothered and irritated her. If she was in a public setting with her family, her brothers or mom would try to shield or protect her when others pointed or stared at her. 

Amy said, fortunately, she wasn’t bullied too much while she was growing up. However, there were certainly times where people called her names or were mean-spirited toward her. 

In elementary school, there was an incident where a child called her, “Robot Legs.” She said if she heard it today, she probably would have played along or laughed it off. However, back then, she was very sensitive to comments like these, and it hurt her feelings. 

There was also a phase in elementary school where one of her friends was very bossy toward her. For both of these times, she confided in an adult who helped her to manage each situation. She wishes she could say she “shrugged it off,” but it was challenging for her to navigate. She also had to remind herself that usually bullies pick on others because they are insecure with themselves.

Amy’s advice for people with Moebius navigating getting stared at is, “kill them with kindness.”

Amy had the smile surgery when she was 5 and 6 years old. Because she was so young when she received the surgery, she said she was not part of the decision. Her parents saw the info on Chelsey Thomas’ surgery and Amy’s mom talked to Lori (Chelsey’s mom) as well. Her parents and Amy met with Dr. Ronald Zuker in Toronto and thought Amy would be a good candidate for the procedure. Amy’s parents thought that the smile surgery would help Amy, knowing that she was going to have many other challenges.

Amy and her parents were very satisfied with the outcome of the procedure. Amy is able to form a smile and twitch either side of her lips. However, Amy said she does have to think about it; it doesn’t come naturally. She said being able to smile and physically express her joy is a gift. She feels like having the surgery boosted her confidence and has helped her feel more comfortable in social situations. 

Amy wants the Moebius community to know that if you do choose to get the smile surgery, the recovery may take awhile, but the end results are worth it! The benefits outweigh the costs. 

With all this being said, though, she does think the opposing arguments against the surgery are valid and understandable. She said if you decide that the surgery isn’t right for you, that’s perfectly fine. After all, having the ability to smile does not dictate your worth and value.

Amy has attended all different kinds of Moebius events. Everything from state meetups to conferences and beyond. Last year, she went on a cruise with other Moebius individuals. If there is a social opportunity planned, she will do her best to be there.

Her first official Moebius event was the conference that was held in Mississauga, Ontario, back in the ‘90s. She said the first time meeting others who were like her was special and life changing.

Amy’s favorite event was going on a cruise with other Moebius adults. She loved being on a cruise ship, getting to travel to Mexico, and bonding with her friends. She said there were so many wonderful moments. Because it was a small group, they all sustained this close connection. 

The conferences she has participated in take the second spot on Amy’s list. She loved all the late night laughs and bonding experiences she shared with everyone. She said she always gained so much insight from the conferences, too. 

Amy wants everyone to know that despite the adversity, she absolutely loves her life. She’s so grateful to be a part of the Moebius community, and said it is so incredible having such an incredible support system.

She also wanted to share some of her hobbies. She loves to read, go to the movies, go out to eat, ride her bike, ski, volunteer for different organizations, and travel. She dances and sings all the time when no one is watching (and badly). She loves her family, friends, being an aunt, and her kitty. Also, she is a coffee and pop culture enthusiast. 

Written by: Kari Storm, Communications Assistant