A fashion show is taking place on Fifth Avenue. Normally, the catwalk is elevated, but not this time. There were a lot of people on the benches. James Ian was the first person to walk it and he wore a suit with a howling wolf embroidered on the back.
Ian was walking with a limp. The other models used motorized wheelchairs. The event was part of an initiative to raise awareness about the lives and needs of people with SMA, a condition in which damaged or destroyed motor neuron lead to various levels of disability. The clothes were designed in a way that made them unique. According to an event brochure, Ian’s suit featured a magnetic closing to create the look of buttons without the need for fastening them.
Ian said that non-disabled people are not telling their stories correctly in the media. Non-disabled people are telling the stories that are incorrect about the disabled community. He said that the world requires more disabled actors, models, writers, CEOs, and CFOs.
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Ian loves his SMA community. I am a big fan of the disabled community. I am proud to be a member of the disabled community. My flag is waving when I walk down the street with my SMA limp.
Genentech funded the event that took place last week. Ian wrote and performed an inspiring song and music video for SMA My Way.
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SMA My Way is this year’s big SMA fashion show held in a store in Midtown. It turns out that fashion is both a way of empowering people with SMA, who face severe limitations when it comes to clothing, and a way of dramatizing the challenges they face.
The student who walked the runway with his sister wore a jacket. He told the audience that he doesn’t wear leather jackets because they make it hard for him to use his wheelchair. The jacket’s sleeves were attached to a harness. Women’s dresses had their hems shortened so that they wouldn’t interfere with their wheelchairs. Allegra Keys, a poet and student, had a stretch panel on the back of her red off-the-shoulder gown to make it easier to sit in a wheelchair. There were openings in the boy’s jacket and shirt that could be used for a feeding tube.
The stars of the show might have been the Burcaws, a married couple who have one million subscribers on their YouTube channel, Squirmy and Grubs. Three books have been written about living with the condition.
They said in a backstage interview that they were motivated by the overwhelming response to their videos and the negative responses from online troll. They are still motivating us even today. There is a lot of ignorant people out there, so we need to keep doing the advocacy that we are doing.
It turns out that fashion is a window into the lives of people. He said finding clothes is difficult. He said he was small. I have to shop in the children’s section, I’m 30 years old. I don’t want to have a teddy bear on my shirt.
Hannah said that you can find a cool T-shirt with a message in the back. Don’t worry!
For the Double Take fashion show, Shane wore a purple suit jacket that had stretch panels at the elbow to help bend and separate the sleeves from one another. He wore a stretchy pant shaped to his leg and a more formal purple pant that snapped over it.
Open Style Labs is a nonprofit that aims to make fashion more accessible for people with disabilities. Grace Jun was a designer at MIT before founding it. At the University of Georgia, she is an assistant professor.
The designer of the pants said she became interested in the project after she was diagnosed with multiplesclerosis. It was hard to dress herself after her disease flared. She came up with new ideas. One of the dresses in the show used stretch fabrics to make it easy to pull on and off.
There are ways to make these fabrics more accessible to everyone. We can try to make it more accessible.
Genentech supported all of this work. The company is interested in SMA. It sells a daily oral medication that is used to treat SMA. It is an effective and expensive SMA treatment. It made $500 million in revenue in the first half of the year.
The fashion show had nothing to do with Genentech. Genentech didn’t know which drugs the people were on at the event. The benefits to Genentech were to bolster the company’s reputation.
The event reminded us of the awful way that people with disabilities are treated in society.
The people who are involved in the SMA My Way program care about the voices of the SMA community. I don’t want to call them all-stars.
Hannah said that the people were great.
Great people and great voices.
They don’t think about Genentech being part of a large pharmaceutical company.
It didn’t seem like the other participants did. Sawson Zakaria, a model and actress with SMA, said in the on stage Q&A that she sees the fashion show as a way of helping to create more roles for people who are disabled.
The more people with disabilities have the chance to work and be a part of the conversation, the more non-disabled people will see how difficult it is.