We all have certain triggers that bring back unpleasant memories. I grew up in the late 1970s and early ’80s when Richard Simmons, Jane Fonda and aerobic exercise were all the rage. Whether it be sweatpants and a T-shirt, or a matching set with a jacket, the sweat suit design was intended to be comfortable and promote exercise and relaxation. For me it was just the opposite.

I became a C4 quadriplegic in 1983 when I was 16, and although very athletic, I did not willingly wear sweat suits before my injury. Like my friends, I’d wear a T-shirt with sweatpants. Suddenly, I was hospitalized and spending my days and nights in bed and for a long time was unaware of, or not focused on, my clothing. After a month-long initial hospitalization, I spent eight more months at a rehabilitation facility.
As usual for a 16-year-old girl, body image was quite important to me. However my daily “uniform” at rehab consisted of various multicolored velour sweat suits that my parents brought in. Regardless of the weather, I wore high-top sneakers, compression stockings and a sweat suit complete with long-sleeve jacket and pants. I hated how I looked.

A Kindred Soul

Thirty-four years later, memories of my body-conscious days in rehab came flooding back to me when I saw the 2018 movie Wonder. The main character, Auggie, has a rare cranio-facial deformity, called mandibulofacial dysostosis. After being homeschooled, Auggie’s parents send him to a private school when he enters fifth grade. The process is excruciating for him. He wants to be completely covered, including wearing a space helmet, so his facial deformities will be hidden. He is consumed by worry that he will be mocked, ostracized and misunderstood by other students.

I identified strongly with his situation. Returning to high school after rehab, I did not want to keep wearing those velour sweat suits but had no interest in purchasing new clothing. Everything that I had in my closet from before my injury did not fit or look right because I was sitting in a wheelchair.

My clothing requirements seemed endless. I needed larger sizes for easier movement and pants without back pockets that wouldn’t cause a pressure sore. I refused to wear anything with short sleeves because my arms had atrophied and I didn’t want anyone to see my lack of musculature. I viewed my arms as “chicken wings.” I was at the mercy of others to style my hair and put on my makeup. I stuck with my high top sneakers because they accommodated the swelling in my feet that occurred during the day. I resorted to a few pairs of baggy pants and a limited selection of long sleeve oversize shirts — preferably men╒s because they were usually roomier.

Going off to college amplified my intense discomfort with my appearance. I was about to meet many new people. What would they think of me? I viewed myself as ugly and out of style. I had moved on to a series of longer sleeve shirts and matching cloth pants with elastic on the waist. My outfits reminded me of Garanimals — the children’s clothes that used mix-and-match separates — for adults. I still wore the high top sneakers. And there was still no showing of skin.

My roommates were kind and often offered to style my hair and put on my makeup. On those occasions, I was able to glimpse beauty. But I still had a negative body image and continued to be self-conscious about the changes that had taken place as a result of my injury. I was not made fun of, and had many friends, but I longed to feel stylish. Observing other students, I was keenly aware of how I wanted to dress, but I didn’t have the courage to do so.

Back to the Mall

A turning point came in 1990, when I was attending law school. My nurse badgered me — and trust me, it took a lot of badgering on her part — to at least try shopping at a local mall for new clothes and shoes. She was keenly aware of my body image issues and was able to slowly convince me that there were options: shoes that were more stylish and could accommodate my swollen feet, blue jeans that I could wear and shirt styles to try.

Without her nudging and taking me shopping (like Auggie’s father hiding his mask so he was forced to show his face), I would not have made any changes in my wardrobe. Not only was it mentally difficult, but it was impossible to navigate in the clothing store without catching my wheelchair on a rack and risk having everything fall on the floor — although that did happen a couple of times.

The new shoes were not ideal, and certainly not the latest style, but they looked worlds better than high tops. I was ecstatic to put on jeans, as I had not worn any since before my accident. And my nurse was willing to go back to multiple stores without me to find additional styles.

On one trip she arrived back with a short-sleeved shirt. It was very hot outside, and she convinced me to put it on. I felt completely naked. I stared at my arms in horror and did not want to go outside. But I had to go to class. So I did, and I survived. It wasn’t comfortable, and I wasn’t happy, but I finally showed some skin in public!

So began an evolution. Getting a legal job required me to wear clothing that I never dreamed I would be willing to wear. I started with very basic, elastic-waist skirts and extra-large jackets. I shopped at one store where I could easily navigate my wheelchair between racks and get assistance (these were the days before the Internet and online ordering). I slowly moved on to more stylish suits and became more adept at identifying the type of clothing that looked good in a wheelchair and accommodated my ostomy bag. I slowly began to like myself and feel that I looked good. I began to feel comfortable in my own skin. Shorts and a tank top took years. And even though over time I became much more comfortable with my body image, I still resisted wearing anything that revealed my chest area and legs.

My Inner Fashionista

I’m now considered a fashionista by family and friends. I enjoy shopping for a bargain and finding exactly what I am looking for. I╒m pleased with the progress being made by advocates in the disability community that continue to put pressure on the fashion industry to design clothing for individuals with disabilities and to even consider using models with disabilities. In the meantime, I’ve found my way with conventional clothing and have my favorite stores and styles. And given that I enjoy the sun and the beach, I have finally become comfortable wearing a tank top and shorts. On occasion, I╒m willing to take off my scarf and show my trach.

In Wonder, Auggie develops deep friendships and realizes that what matters the most is who he is on the inside and not his appearance. And if people were not comfortable with him or mocked him, he realized that it was their problem and not his. Being kind to everyone regardless of appearance is a mantra that he exudes, and he no longer yearns for his mask.

Like Auggie, it was painful and took a long time for me to realize that my appearance did not define me. There is nothing wrong with wanting to look nice but covering everything up was a symbol of my own discomfort with my body. No more sweat suits for me. Wonder made me realize that I can reflect on the past and be proud of myself for no longer being at war with my body. I finally feel free.

Fashionista Tips for Wheelers

Here are some shopping tips for fashionable clothes that I have found to be helpful:

• Online vs. shopping in person: I recommend shopping in person so that you can see the size and texture of the clothing. If you find a brand or style that works, you can then order online.

• Functionality: I purchase most pants in a size larger than I need so when I sit down the pants do not pinch my skin and are not too short. Because of my colostomy, my pants (or skirt) cannot be tight, but that doesn’t mean I need to buy everything with elastic. I look for blouses and blazers with buttons all the way up toward the neckline so they don’t flop open, and I avoid short shirts because they show my ileostomy bag. I find that longer shirts with slits on the side look the best when I am sitting down.

• Find a good seamstress or tailor: Most clothing that I purchase needs to be adapted. I use the same seamstress (and sometimes my mother-in-law) who knows where to put holes in the side of my pants or skirt to accommodate hooking up to a larger bag; where I will need buttons if a blazer or shirt has a V-neck and flops open; and when removal of parts of pockets or belt loops on the back of pants or shorts is necessary to avoid pressure sores.

• Shoes: Because my feet swell, I shop at the discount section of local department stores (Macy’s sale racks are my favorite) and find stylish and good quality shoes at a low price in multiple sizes. I do not purchase shoes that are narrow or have buckles that will leave marks. My shoe closet has a range of sizes to accommodate the swelling of my feet. I do stay away from high heels, as they are not conducive to good posture when they are placed on or over my footrests. The maximum heel that I can wear is about 1 inch.

• Undergarments and socks: I purchase regular underwear, and I buy specialized bras at Nordstrom’s because I am a breast cancer survivor and require a prosthetic bra. Prior to my mastectomy, I ordered bras online because navigating the lingerie section of a department store is a nightmare. Socks are useful to have in different thicknesses and once I find a type that works best for me I either purchase them in the same store or order online. When it comes to what I wear to bed, I find that for me a T-shirt is the simplest and doesn’t cause wrinkles.

• Coats: I dislike wearing a coat because I cannot put it on independently and wearing one makes it difficult to move. I opt to layer. When it is cold, I usually wear an insulated undershirt; a regular long sleeve shirt, blouse or sweater; and either a down vest or poncho. Only in the coldest weather do I wear a coat; then I usually opt for a heavy poncho and a hat.

• Warm weather clothing: I apply the same rule for shorts and Capri pants that I do for regular pants as far as size, design and tailoring. I wear tank tops and short sleeves, but sometimes I pin the back because I do not have musculature in my shoulders. I’m not a bathing suit person so that isn’t a problem. But I do like flip-flops and toenail polish!

• Comfortable clothing: Yes, I wear sweatpants when I am going to the gym. However, they are no longer the matching velour sweat suits. My preference is to wear sweatpants and a T-shirt.