Interview #5: Becky Leung (Neurofibromatosis)
My husband, Scott, met Becky in college at James Madison University and when we came back to the area in 2012 we found we were attending the same church. Becky was very willing to share her story, and has a lot to say in her interview about other people’s perspectives and how the community can be more welcoming in their interactions with people who have any type of disability.
Becky was born with a rare genetic disorder called Neurofibromatosis (NF). This disorder causes tumors to form on nerves anywhere in her body causing chronic pain. Since nerves conduct sensory information to all parts of the body, she is constantly in pain. These tumors are noncancerous, but they can turn cancerous so she is continually monitored by her doctors. She has other family members with mild cases of this disorder; however, she has experienced more visible deformities with the craniofacial neurofibromatosis as she has had tumors removed from her head and face, which has also impacted her vision. She is really thankful that she hasn’t needed to make a lot of changes to her home to accommodate her needs physically, but shares a wealth of information and tips on how to interact with people who look different and have chronic pain.
Life Doesn’t Stop When You Are In Pain
One of the big things Becky wanted others to know is that she can do a lot more than people give her credit for, especially when she’s in pain. Even though others may perceive that she can’t do things because of her pain, she has goals and likes to participate in things just like everyone else.
A friend of hers told her that if she was going to be at home hurting sitting in front of the TV or reading a book, why doesn’t she just go somewhere and enjoy herself and have fun? Becky agreed! There are times where she may need to decline participation due to pain or headaches, but she tries to do as much as she’s able. She is able to drive, but she may feel safer having others take her depending on how her migraines and pain levels are affecting her.
She really enjoys traveling. She’s gone to Alaska by herself, and most recently to a conference with the worship team at our church. Below is a picture of her riding a camel on family vacation to the Ark Encounter.
When people have a disability and have pain, a person doesn’t have to stop their life because of a disability. They can still live and enjoy life… yeah it slows you down, but it doesn’t stop you.
Becky had a goal to complete her Master’s degree in Special Education focusing on Autism. She is really proud of this degree because way before she even went to college she had a psychologist tell her that she shouldn’t go to college because she would never succeed due to her disability and health issues. Not only did she complete undergrad, but she has a Master’s degree in a field to help others succeed. Becky said, “That’s why whenever I work with any kid (especially ones with disabilities) I try to encourage as much independence as possible.”
In addition to helping others, she also enjoys singing, karate, exercising, swimming, and making her own stationery.
Don’t Judge on First Impressions
I loved Becky’s response in what the community could do to make things more welcoming for her:
One big thing that I’ve always wanted is for the community not to judge. I think the community in general has a habit of judging people before they actually know people… they don’t see people beyond their looks… and it’s not just me, they see me with just one eye, they see a person in a wheelchair, they see people on crutches, they see people with Down Syndrome whatever… they don’t see beyond that and they don’t give the person a chance of doing things. They could look at me and say okay, “this person doesn’t look like she knows quite what to do,” but they don’t know that I have a Master’s degree in Special Education without talking to me. They don’t know how good I am at it unless they give me a chance.
She also wants service providers and businesses hiring people for jobs to look beyond first impressions and really get to know the skills and abilities of each person to see them as an asset, before looking at their disability.
Staring and Asking Questions
Becky talks at length about when people stare at her and make assumptions about her appearance. She doesn’t mind kids staring, because they’re curious in nature, but she gets frustrated when adults follow her around or watch her for long periods of time. She’ll often respond with, “can I help you find something?” to let them know she sees them staring.
She’s pretty open at answering questions, because people are generally curious. However, she wants people to be genuine and ask in a way that indicates they they care about her as a person and interested in her life. If their first question is, “what happened to you?” or “were you in a fire or in the war?” then she’ll probably decline to answer because their approach has a tone of being nosey. She wants people to want to learn more about her and care for her as a person. She doesn’t want people to interact with her just to get an answer about why she looks different. Just be kind!
She said she still gets shocked by what comes out of people’s mouths sometimes. She went to the gym on Halloween, and when she arrived someone told her that the costume contest had already ended. I mean, really? Many of these incidents still hurt her feelings, but it builds her resilience and helps her react differently to comments in the future. She just wants people to respect others physically and emotionally, and think about their approach when they ask others questions.
Becky’s last thoughts:
“When people, anyone, comes up to a person with a disability, I would encourage a person to look for a person’s ability, rather than their disability, and see beyond what is on the surface. Like with me, see beyond my eye blindness and see what I can actually do… Look beyond people who are in wheelchairs…, who are on crutches…, who have chronic pain… they can give a lot of good advice, they can do a lot of cool stuff.”
P.S.: If you’d like to share your story, contact me: sarah@universaldesign.org and we can set up a time to talk!
