Perfectly Imperfect – New Invisible Disability Blogger
A local mom has launched a blog for fashionistas with invisible disabilities.
Most of Lainie Ishbia’s friends and acquaintances knew nothing about her struggles with certain daily tasks like holding a pen, putting change in a parking meter or opening a packet of sugar. They didn’t know that under her cute jeans and chic shoes were a pair of leg braces she needed in order to walk. It wasn’t a secret. It’s just that her degenerative neuromuscular disease typically didn’t come up in conversation.
“I didn’t think my invisible disability should define me or be a part of how I introduce myself,” she said. “I didn’t hide it but there was no point in telling people about it either.”
A few weeks ago, Ishbia, a 47-year-old Huntington Woods wife and mom, decided to publicly share her condition along with her passion for fashion, a heavy dose of inspiration and all her favorite lifestyle hacks for successfully navigating life with an invisible disability. Her platform for sharing — the internet. Her website — trend-able.com.
Trend-able is about empowering women with invisible physical disabilities to look and feel their best, said Ishbia, who maintains that people feel better when they look better.
“Fashion for people with invisible physical disabilities is nearly nonexistent. There are some brands designing for disabled people, but their focus is on visible [wheelchair-dependent] disabilities,” Ishbia wrote on her website. “As an AFO (leg brace) wearer, the shoe catalogues geared toward people ‘like me’ feature smiling grannies on the cover, wearing ugly black Velcro ‘comfort’ shoes that are definitely not my style. I started to wonder if there are other women out there with invisible disabilities who want to look and feel their best but settle for shoes or clothing just because they fit.”
When she introduced her new venture in late January, she did so by posting the following on Facebook: “I’m sure many of you didn’t know until now that I have a slowly progressive neuromuscular disorder called Charcot Marie Tooth (CMT) Disorder. Since CMT is not life-threatening and currently untreatable, I have never felt the need to show the world I need leg braces to walk and that I can no longer button shirts or write with a pen.
“It is not easy to put myself out there like this,” her Facebook post continued. “I’m slightly perfectionistic as many of you know and rarely allow myself to feel vulnerable.”
The responses she’s received so far have been overwhelmingly supportive. Aside from the friends who called to say, “I never knew,” dozens of strangers reached out to praise Ishbia for her helpful tips as well as for having the courage to share her story. And, it didn’t take long for organizations to contact her about speaking at upcoming disability-related events. For example, in the fall she will be speaking at a Washington, D.C., conference hosted by the Hereditary Neuropathy Foundation.
One of her biggest fans was her mother, Marlene Goodman, who passed away Jan. 31.
“My mom really inspired me to do this project,” said Ishbia, who previously worked as a social worker. “Her CMT was much worse than mine. A big part of Trend-able was seeing how much she struggled and trying to help her find an easier way of doing things.
“Despite her disability, my mom was always active. She didn’t let her disability stop her,” she says. “Through Trend-able, I have already helped a lot of people like us and I know she was super proud of this.”
Ishbia’s other cheerleader, husband Howard, praised his wife for her dedication to her current venture. He credits her not only for filling a niche where there were no resources but also making sure that Trend-able isn’t about her and her struggles. As a blended family, the Ishbias have five children between the ages of 14 and 24.
So far on her website, Ishbia has delved into a range of topics including a tweak of the week (such as a sturdy countertop stand for a hair dryer) and stylish shoes that work with leg braces and orthotics. One post featured a bunch of cute shoes (a reader liked her advice and bought 10 pairs of shoes). Another talked about ways to navigate a fancy party when “the classic cocktail party little black dress isn’t an option.” The post also talked about ways to make it through a cocktail hour when standing and/or holding food and drinks are a challenge.
Ishbia, who holds an undergraduate degree in English and a master’s degree in social work from the University of Michigan, was not always accepting of her condition.
“Growing up, I didn’t want to talk about having a neuromuscular disorder, especially not my feelings about it,” she says. If someone asked her why she couldn’t run or jump, she told them she had a skiing accident or made up a story about another sports injury, recalled Ishbia, who currently exercises, or at least tries to workout, daily.
“My mom put people at ease with her disability whereas I used to get defensive when someone asked why I was limping. I reacted negatively. I wanted to be seen as someone who was pretty and thin,” she recalled.
Ishbia’s later-in-life, positive outlook comes from the way her mom always lived her life. “I have tried to follow her positive example by not complaining about the things I cannot change,” she says. “Each one of us has ‘something’ and we all deal with our somethings the best we can.”
Jennifer Lovy Contributing Writer