Moebius Voices

1. Sophie: How does Moebius affect you?

Roger: Moebius makes people not want to get too close to me and only interact with me if they have to. Even though I know some nice people, there are still lots of people who feel awkward around me.

2. Sophie: When were you diagnosed? What was known about it at the time?

Roger: I was diagnosed as a baby. The doctors just knew basic information.

3. Sophie: Did you have any interventions, therapies, or treatments growing up?

Roger: I had my eyes operated on, my feet operated on, I had the two smile surgeries in Toronto, and other related surgeries. I also had speech therapy.

4. Sophie: What was it like growing up as a child and young person with a facial difference?

Roger: When I was in school, I was bullied. In Kindergarten, I remember a kid saying “Roger’s handicapped! We don’t like him!” We were having a snack around the table. In Grade 1, the kids beat me up and bullied me. One kid said “Go away Roger! Nobody likes you!” I told my mother that nobody likes me and she sang me part of an old song. I was held back in Grade 1 because I didn’t have any known friends. But I was secretly friends with a girl named Jen.

As I got older, the kids started to accept me more. I was on Student Council twice and I won an award for persevering, being optimistic, and congenial. In my young adult years, I was very lonely. I wanted to have a relationship with a woman. But they all turned me down. I never had a girlfriend until I was 43. But she needed a man to give her more attention. So it never worked out.

5. Sophie: What does life look like for you now as an adult?

Roger: As an adult, I find myself falling through the cracks. If I get a job, I am put somewhere doing what nobody wants to do while other people move up. It is frustrating.

6. Sophie: Moebius Syndrome Awareness Day (MSAD) is very important to you - what are some ways you've celebrated in the past?

Roger: In the past for MSAD, I was in the newspaper and on the radio. I got my co-workers t-shirts and encouraged people to wear purple. I also got an entertainer to come and help me raise awareness. She moved on though.

7. Sophie: What could someone do if they are celebrating MSAD for the first time? How could they share awareness?

Roger: If someone is celebrating MSAD for the first time, he or she can make posters, wear purple, and encourage others to do so.

8. Sophie: What is your best feature - the thing you like most about yourself?

Roger: I am creative, and my creativity helps me raise awareness.

9. Sophie: What would you say to parents and families whose child is receiving a diagnosis of Moebius Syndrome today?

Roger: Welcome to the community if your child just received a diagnosis. You have a long battle ahead of you. But the community is here for you. Make sure that the school celebrates everything that it can. We are celebrating Craniofacial Acceptance Month in September. Moebius Syndrome Awareness Day is on January 24th. Rare Disease Day is the last day in February. Face Equality Week is the third week in May. Let’s raise some awareness and get some support!

Thanks for interviewing me! I hope that you can use these answers!