Rare Disease Report
Patients & Caregivers

Rare Fashionista

JULY 06, 2016
Stylish people are not rare in today’s society. Looking sharp and classy has been a symbol of status that goes back centuries. And in today’s world, we are constantly surrounded by clothing and shoe stores. For most of us, it is simply a way of life. But have you ever thought about individuals who might have a rare health condition or disability? Do you think it would be just as easy to be fashionable and trendy for those with disabilities as it is for the general public?

Models with disabilities

There has been tremendous headway in recent years within the fashion industry—models with disabilities are now debuting on the runway, in television shows, and appearing in commercials and print advertisements. And while these appearances play a significant role in gaining awareness and understanding for people within the disability community, there is room for improvement.
Imagine being a young child or teenager who would like to wear shirts or pants similar to their classmates, but due to low finger dexterity or weakened strength, he or she is unable to dress himself or herself or even wear these fashions at all. Or what if you required leg braces that made it nearly impossible to wear jeans? These are just two examples of the struggles that kids, teens, adults, and even the elderly face on a daily basis when it comes to clothing. For individuals without a disability, selecting an outfit isn’t usually difficult. For others, it is an ongoing challenge.

Fashionably rare

For countless years, my rare health condition (Mucopolysaccharidosis Type VI) has limited me to a height of only forty inches. Though I can walk, I also use a power wheelchair. Throughout my life, I have always tried to dress like my peers. But as a person with a rare condition, that effort has been a constant struggle for me. Though it usually takes much time and effort, I have not let it stop me from pursuing my love for fashion despite the lack of options suitable for my size and age. And I know that I am not alone in this struggle.
However, when individuals with disabilities or rare health conditions are able to put together outfits no different from their peers, it can greatly improve their outlook and self esteem.

Job interview clothing

One example of the importance for individuals with a disability to have access to appropriate clothing is when it comes to job interviews. Wearing age-appropriate, properly fitted clothing can assist them when being considered amongst other candidates. For me, searching for clothing and shoes became more frequent while I was in college and after I graduated as internships, interviews, conferences, and presentations became more common in my everyday life.  Not only is fashion an interest of mine, but, as we all know, first impressions are everything and I wanted to dress for success. 

Independent rare living

Another issue that comes into play for people with disabilities is finding stylish clothing that is accessible enough for individuals to dress themselves independently or with minimal assistance. While "adaptive clothing" —clothing that utilizes magnets in place of tricky buttons and zippers— is a relatively new concept for most of the fashion world, it is certainly something for major brands to consider. From a business perspective, there are millions of individuals living with disabilities that want to wear adaptive clothing. This type of specialized clothing would be no different than brands that carry plus sizes, petit sizes, big and tall sizes, and maternity fashions; they were all developed under the same concept. Best yet, adaptive clothing would cross all ages and abilities—virtually an untapped market.
Independence is a word that many of us living with rare heath conditions and disabilities strive for in many ways, but especially when it comes to dressing.  When one has a rare health condition or disability, it is known that there are going to be times and situations where assistance is necessary. But what if dressing independently and being trendy were a given, not a goal?

Rare fashionista

Fortunately, there are people in the world working towards this very objective. For example, one non-profit is working towards mainstreaming adaptive clothing into all stores for all ages of people with disabilities. The organization is called Runway of Dreams and the first major brand to partner with them is Tommy Hilfiger. Through this partnership, the first youth line of clothing debuted just this year and is already enjoying great success in sales. Runway of Dreams says they are still hard at work getting other brands to join their partnership to make a larger impact on lives of those with disabilities.

If you are a person without a rare health condition or disability, I encourage you to think of an outfit or a special pair of shoes that you love and think about the feelings you gain from wearing them: Confidence. Motivation. Power. Then think about those of us who struggle to find these kinds of items and imagine our feelings: Frustration. Sadness. Defeat.
If you are an individual with a rare health condition or disability, I urge you to stay optimistic because I believe that this is just the beginning of the fashion world's nod to people with rare diseases and disabilities.  Adaptive clothing is the future and we all deserve to feel confident and fashionable, no matter what our abilities may be!
