More Accessible Clothing Should Be Available

Mindy Scheier was a fashion designer before her son, Oliver, was born with muscular dystrophy. As he matured and she saw him struggle to get dressed, she became aware of her industry’s limitations for people with disabilities.

When he was eight, Oliver wanted to begin wearing jeans. At the time he wore sweatpants daily. Unfortunately, Scheier couldn’t find jeans that accommodated Oliver’s orthotics and were easy for him to get on and off. Muscular dystrophy means Oliver has trouble with zippers.

Scheier put strips of fabric fasteners on the inseam. She also replaced the buttons and zipper on the front the same way. Oliver could then wear jeans, making it easier to fit in with his peers.

Scheier now uses her Runway of Dreams Foundation and Gamut Management talent and consulting business to raise awareness about the need for designers and stores to accommodate adapted clothing.

Oliver who is now 18 wants to see more accessible clothing available for teenagers and young adults.

““It’s all about opportunity and the chance for people like me and people my age to express themselves through fashion like any able-bodied person,” he said. “It says a lot about who I am on the inside, and adaptive clothing allows me to do that”. he told the Associated Press.

Many well known brands are now offering adaptive clothing including Tommy Hillfinger and Target. In addition, there are companies such as No Limbits and Billy Footwear which specialize in adaptive clothing and shoes. Billy Footwear was founded by Billy Price who became a wheelchair user following a back injury at age 18.

Kimberly Peterson lives in Knoxville Tennessee. Her 14-year-old daughter Tilly is a wheelchair user, and cannot speak due to a condition called Joubert Syndrome.

Joubert syndrome (JS) and related disorders (JSRD) are a collection of developmental delay/multiple congenital conditions syndromes in which the molar tooth sign (MTS), a complex midbrain-hindbrain abnormality apparent on brain imaging that was first identified in JS, is the required feature. The incidence of JSRD is estimated to be between 1/80,000 and 1/100,000 live births, albeit these values may be conservative. Hypotonia, ataxia, developmental delay, intellectual disability, aberrant eye movements, and neonatal breathing dysregulation are all neurological symptoms of JSRD. These have been linked to multiorgan involvement, most notably retinal dystrophy, nephronophthisis, (an autosomal recessive cystic kidney disease) hepatic fibrosis, and polydactyly, with both inter- and intra-familial heterogeneity.

Before clothing modified for g-tubes became available, Kimberly made her own. It is still difficult to find outerwear and long sleeve shirts that work for Tilly.

As a disabled person, accessible clothing is important to me. Some clothing is easier for me to manage independently. I don’t wear pants with buttons or snaps because cerebral palsy affects my fine motor skills.

Disabled people want to spend their money, work, and conduct business where they know they are valued. Accessibility should be the norm, not an exception.

Sources:

Brancati, Francesco, et al. ‘Joubert Syndrome and Related Disorders’. Orphanet Journal of Rare Diseases, vol. 5, no. 1, July 2010, p. 20, https://doi.org10.1186/1750-1172-5-20.

Italie, Leanne. “Clothes for Kids with Disabilities Get Better, but Teens See a Lack of Fashionable Options.” ABC News, 3 Aug. 2023, abcnews.go.com/amp/Business/wireStory/clothes-kids-disabilities-teens-lack-fashionable-options-101980596.

Wolf, Matthias T. F., and Friedhelm Hildebrandt. ‘Nephronophthisis’. Pediatric Nephrology, vol. 26, no. 2, Feb. 2011, pp. 181–194, https://doi.org10.1007/s00467-010-1585-z.

1 comment

  1. Grace:

    I had read Oliver’s story before.

    And learnt a lot about and with Tilly.

    Especially about all the related connections with Joubert Syndrome.

    The molar tooth thing might be confusing to a lot of people who do not know neurology and genetics well.

    [even if we know roughly where the hindbrains and midbrains are and how they interact with one another – or how they “should”].

    Was lucky to find some accessible denim two months ago – not sure how they would fit around orthrotics!

    [and not a zipper or button in sight…]

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