By Kari Storm

Madeline Weber-Myers is passionate about modeling, challenging standards of beauty, and spreading Moebius syndrome awareness.

Madeline has always been interested in fashion. She said, due to having Moebius syndrome, it was always hard for her to be read. So, fashion was a way for her to express herself.

Madeline entered a national modeling contest this past Fall. The winner would get 100k and would be the cover girl for the company’s magazine that year. The contest had rounds. Each round would reduce to the highest publicly voted candidates. These rounds would last till the end of Spring, until the final round.

Madeline said she went into it mainly to see how accepting the public was of a nonconventional model. She hyped herself up on her social media to get people to vote. She said it ended up actually working. People were voting for her. She was in the top 3. She started a post on reddit with her motives and wanting to bring awareness to disabled models. She said people were really on board.

However, she said she ended up having to drop out of the competition after she found out you could pay for votes. She said it is just crazy that even without paying, she made it to the top 3.

Madeline got into modeling through an independent internal experiment. She wanted to see how much it resonated with people and agencies to break these out of date standards in the modeling world. Madeline thinks there is beauty in uniqueness, and we don’t highlight it enough. She said modeling is all about showcasing the beauty in humanity, often used to highlight brands. Why should there be a standard/requirement to an art?

Conceptual fashion has always intrigued Madeline, but she said along with the designs, are the models. She said, overall, the modeling world has a bad reputation of being strictly cookie cutter, despite models being part of the “look”. And, the look of the final piece needs to bring something new usually nowadays.

Madeline dreams of starting her own modeling agency where she hunts down unique looking models. She got this idea from just seeing beauty in some of her fellow Moebius Syndrome Foundation members.

What Madeline likes most about modeling is it is always fun and collaborative when brainstorming with her photographer – seeing eye to eye, a certain sense of vision they both have on a photoshoot and making it come to life.

What Madeline finds most challenging about modeling is the negative voice that sneaks into her head during shoots. She said it is very judgy! She will be holding still in a pose, and the voice will ask “are my eyes too intense right now?”, “Is my chin tremoring?”…etc.

Madeline said this voice is a result of hurtful sentences that have been said to her, and alienating body language that she has gotten from those around her.

When she gets in her head like that she immediately starts journaling, reiterating her messages that are so important to her and motives to why she is pursuing what she is.

Madeline said one of the reasons she decided to get into modeling is because she saw a very confident looking model with a disability, and it inspired her. She said there is so much beauty in the pure uniqueness of how different each of the 8 billion on this planet are, and modeling is an occupation where requirements shouldn’t be requirements.

For people with Moebius considering getting into modeling, Madeline’s advice is don’t let anyone tell you what you need to be or what you need to represent. There is power in saying no. She said modeling is definitely the ultimate test of confidence building, and it is very beneficial to stay true to who you are and the beauty within you.

Madeline said Moebius affects her physically in that it can be difficult for her to get microfacial body language across since most of her face is paralyzed. She also has pretty noticeable hand tremors and a speech impediment that she is in therapy for.

Madeline said, emotionally, Moebius is a crucial part of who she is, She said she has learned to navigate through life with it. There was a time where she was extremely isolated and felt as if she wasn’t capable of doing anything. She hypothesized that this was mainly due to teachers, doctors, and authority figures putting her into a box of what she could or couldn’t do from a young age. She said Moebius is rare, and back then, people didn’t understand it.

Madeline said she wasn’t bullied in the traditional sense. Rather, she was treated almost foreign, especially when she was in her younger years of education. Kids were dismissive of her due to her differences, She would never get picked in group projects or anything of that sort.

Regarding bullying, Madeline said people that are bullying are usually full of insecurities themselves. They like to project their feelings onto others. That is a character issue on their end. Usually, she said she would just kill them with kindness and honesty.

And, the people who stare, Madeline said that’s mainly out of curiosity. If reframed, the differences you have are worth looking at. If open to conversation, she’d make them aware of Moebius.

What Madeline wants the Moebius community to know is we need to keep pushing for awareness, and we shouldn’t be put into boxes we didn’t consent to.