Julie-Louise Zeitoun

The Meaning of a Choice

An ineffective solution is almost just as bad as the problem. There is no mechanical, material, intellectual, or creative limit in textiles that prevents designers from producing assistive textiles that are both physically and emotionally supportive. If I cannot find what I am looking for in the world, then I will make it happen myself. I imagine supportive textiles—simultaneously clothing and medical devices—that return control to the wearer. These textiles are designed with the human in mind. They heal physically and emotionally, while being visually captivating—fully reflecting the wearer’s sense of self.

Masking

I was 21 years old when I found out that I would need to manage another chronic disability for the rest of my life. Until this point, I had spent my days navigating my way through Autism (and ADHD, although unknowingly). I had this hope that as an adult, with a lifetime of effort, I would be uninhibited by my disabilities. I wanted to put to rest all the agonizing strife they brought me. I dreamt of an ‘normal life’. As doctor after doctor was unable to give me a clear answer, I watched my dream slip through my fingers like dust. I was overwhelmed with a persistent mental fatigue, and I soon found myself in pharmacies purchasing canes and braces. The medical devices I now relied on for support became constant reminders of what once was. Carrying my Fibromyalgia diagnosis around in the form of awkward medical wear was unbearable, and my new reality threatened to break me. I felt I would never be free.

As a by-product of my experiences in special education, it had always been my ultimate goal to appear ‘normal’, no matter what it cost my health. I refused to let slip any emotional fits, physical ticks, or attention deficits. My face would turn red before I ever cried from the chronic pain. I imagined myself as a ‘functional’ disabled person and with a concrete willpower, I contained myself emotionally and physically – nothing seemed to bother me. I did not complain. 

This is known as masking; the act of hiding or suppressing symptoms of health conditions, usually in situations or environments where individuals are expected to act in socially normative ways. I now ask – by whose standards? Like the way an ill-fitting garment harasses the wearer, masking steals from the body. If we must strip other parts of ourselves to find support, can we truly feel whole? 

The Cost of a Disability

We rarely assess the true cost of crushing disabilities. The burden of managing a disability comes with an invisible tax. Regardless of all my efforts, I still had difficulties reading social atmospheres and situations, and I knew my nature. One complaint is acceptable, but I have many disabilities and as a result, many complaints. I have learned the hard way that many complaints are unacceptable – I was sure I’d lose any social connections that I had struggled to cultivate. Social isolation is a real, everyday consequence I reference in every decision I make, and I was too terrified to face it again. I use masking to protect myself, and what little I have. I realized I could never afford to complain.

“Don’t stare, it’s not polite.”

We all know the following story. As children when we first encounter others different from us – for example, an individual in a wheelchair – we can’t help but look. Children are naturally curious, and as a person with multiple disabilities, I am well aware of this. However, we also know what comes next, “Don’t stare, it’s not polite.”  Throughout the day, children will stare at all sorts of individuals, so why do we only make this comment when it concerns those overtly different from ourselves? Whether intended or not, “don’t stare” mentally classifies individuals as ‘not one of us’. Children that fail to realize the diversity of humans become adults with a morbid curiosity about the taboo nature of the othered. In becoming so occupied with correctly interacting with certain groups we end up not interacting with them at all. 

Being blatantly stared at or outright ignored are two sides of the same coin.

There is No Limit Not Worth Pushing

Whether it has been to my benefit or detriment,  I have always had the unrelenting tendency to take on difficult projects, and I’ve always done so with a sober and clear state of mind, well-aware of the challenges waiting for me. However, I know that some goals in life have no clever shortcuts, only carelessly cut corners. I handle my approach to industrial knitting in the same manner that I’ve treated every endeavor before; with deep, interdisciplinary consideration, a relentless drive for a high level of mastery, and a strong devotion to a long-term plan. I understand that I have set a lofty goal for myself, and I did so knowing that I most likely would not achieve what I truly want, but most things in life are about the journey rather than the result. In my mind, if I set the bar to 10 feet high, in the end, I will be able to jump at least 7 feet high. Call me a perfectionist, but I know myself - a higher target drives me to perform at a higher level.

How to Feel Whole?

In the intersections of life where my disabilities stand in stark contrast to others’ realities , there lay questions unanswered. What is the value of masking to individuals with disabilities? What is the price of autonomy and dignity in the context of disability? Why am I afforded the luxury of choice in so many situations except those where I truly need it? I don’t need seven different types of heels to choose from – I need one good pair of orthopedics that don’t instantly call attention to my limp when my chronic pain flares.

 

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