Lack of Clothing Options in Disability Fashion Gives Me a Fit

Young Lee avatar

by Young Lee |

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AFOs / Main graphic for column titled

Let’s talk about disability fashion.

Word on the street is Gen-Z killed skinny jeans. The ritual of stretching your pant legs over every contour of your thighs and calves before leaving home is apparently over.

I’m not shedding any tears.

I’m just one guy with Charcot-Marie-Tooth disease (CMT) in a large and diverse community, but I’ve always found the trend of skinny jeans somewhat frustrating. To me, they always seemed a bit antagonistic toward anyone who may wear ankle-foot orthoses (AFOs).

And I wonder if these feelings are not all that uncommon for many of us in the disabled community. We encounter reminders that typically, disability fashion is not a priority. We end up having to choose between how we might want to dress and wearing what is easier to get into.

I generally hate shopping for clothes and avoid it whenever possible. However, upcoming events have forced me out of my shell, out of my home, and into the clothing racks, with each excursion reminding me how much CMTers like me contend with fashion and clothes.

Preparing to return to AFO life

One event I’m preparing for is the return of AFOs to my life. To get ready, I changed my workout routine and frequency, and I’ve begun buying knee-high socks. I’ve also begun making sure every pant leg has enough room to accommodate an AFO.

And, of course, I had to get new sneakers because wearing an AFO requires a larger shoe size. My orthotist suggested I try a wider shoe, which many AFO users are now wearing. They provide greater support and can be worn longer, but I confess I was disappointed to learn the “orthopedic” section only carried three colors: all black, all white, or all brown.

Looking good for my friend’s wedding

Later this year, my best friend is getting married, and I will be his best man. I enjoyed looking at myself in the mirror wearing a suit that had been tailored just for me. I felt good-looking. Perhaps, I’ve never looked better. In my new suit, I looked strong, clean, and professional.

Still, I got the feeling the tailor hadn’t seen many people who wear an AFO. Apparently, the “slimmer-cut” pants and suits are more stylish? And “high-end” dress shoes are just normally narrow?

So, I’ll have to walk carefully and move more slowly because I can’t wear AFOs with the outfit. The price of looking good is being weaker and more unstable, apparently.

I guess I’m lucky my CMT symptoms are mild enough for now to go fairly long periods without needing assistance or support. Being there for my friend at such an important time in his life is worth it.

Acknowledgments

Part of me feels guilty complaining about my small struggles with accessibility and disability fashion. I know that in many ways, I’m privileged as a cisgendered guy who, despite his disability, is still able to go a long time without needing mobility support.

Not being able to choose a sneaker color I find “cool” and “sexy” is perhaps a silly complaint. And maybe some of my complaints and fears come from some form of internalized ableism.

I can’t help but think that there ought to be more options for folks in the disability community. Must we always feel like we are settling?

I’m still processing this topic. However, at least for now, I’m glad to leave that last pair of skinny jeans in the back of my closet.

***

Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.

Comments

Ruth Butterworth avatar

Ruth Butterworth

Hey Lee,
You have summed this up right, I'm a 42 year old woman who has struggled a long time with shoes especially for weddings! And had stares at my gait and choice of shoes. I love skinny jeans but there is no way I can wear them with AFOs and currently shoe size 5, will be 2 sizes bigger to fit AFOs

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Colleen avatar

Colleen

Fashion and CMT is frustrating. Never able to wear a heel with a dress and have the look sexy long leg look makes me sad Everytime I see something I would love to wear or need to dress for. As you say, it seems a complaint, but we humans like to dress up and look out best. I tend to go for funky things probably because if this dilemma. It has been said to me by non disabled family and friends, well at least you have legs. I find this insensitive as they all "have legs that work " just fine. I want more than feet that dangle and struggle to keep me walking and standing. And I want to wear high heels and look sexy. This doesn't make me self centered. I am just a normal woman in an abnormal body who struggles to look nice and wear shoes and walk.

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Robert Thomas avatar

Robert Thomas

I am 62 and have CMT1A and am long-time volunteer in CMT1A drug trial PXT3003 at Cedars Sinai, Los Angeles. I have dropfoot in both feet and recently discovered Thermoskin has an ankle support that works great for dropfoot. The best is that they are available on Amazon at less than $40 each. They come in small, medium and large. I have a 10 1/2 foot and tried the medium and it works great. They are not very noticeable when wearing pants. I also work out at a gym three times a week, and wear long, lightweight athletic pants. The support fits inside all my shoes with no problem. I don't care for the AFO's that have a plate under my feet. It just feels to unnatural to me.

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phyllis harrington avatar

phyllis harrington

Hi, From another North carolina CMTer..... just wanted to say that I loved reading your story... Know how you feel about finding clothes and SHOES !! Have AFOs but cant or rather uncomfortable driving with them.... so they sit in closet.. I'm sorry to say.... BUT as you I'm still thakfull I'm still up and about, after all I'm 86 so my CMT is fighting with my old age. Keep writing so others will undestand........P.S. Wadesboro

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Cynthia Gwen Stange avatar

Cynthia Gwen Stange

Iam 61 yrs old I was diagnosed with CMT type 1A "originally" in 1993. I was in my early 20's. I had gone to my bone specilist since i was 10 yrs old. He was East Indian with a very strong acent. All I heard was there is nothing you can do about it. So i never asked anymore about it and left it alone. Until i was in my mid 30's maybe. I was takeing some Hard Core falls. i would be walking and my left leg would decide not to move and i would do face plants. Finally went to see a Dr Cheryl Greenburge at the Childrens hospital in Wpg, Mb, Can. who diagnosed me with CMT Type 1A in 2000 yr. MMy oldest daughter has it but not the youngest. I wear AFO"S for about 2 yrs. Ive had them since 2000. Refused to wear them. One day i fell and saw them under my bed. I put them on and got a good pair of orthotics to go with them. I cant remember the last time i fell. I dont wear them inside. I just use my walker. I have the type of CMT that you inherit so does my daughter. Iam the 1st my, my daughter the 2nd, & we are the only 2 the ones with it. We come from a very large family. Ciny

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