Changing the narrative

Changing the narrative

Love Disabled Life, or Love Disabled Life, is a name we subscribe to with both hands. The founder of the LoveDisabledLife.com foundation, portal and store is Jody Yarborough, a writer and graphic designer living in the Bay Area, California, practicing - what she calls - a wonderfully fun, creative and flexible freelance career, while wholeheartedly running a brand that fights the so-called disability stigma that perpetuates discrimination and marginalization of people with disabilities.

Jody was born with a rare neuromuscular disease called congenital trilaminar myopathy. This unique affliction caused her to develop scoliosis and other orthopaedic problems during adolescence that have left her 122 centimeters tall as an adult.

"You may have noticed that I look a little different.
You might be curious, you may even have some questions.
That's okay! Your questions are welcome!

I believe that celebrating our diversity and sharing
what makes us different makes the world a better place."

We remember Judy Yarborough today by recalling her own narrative about herself, full of extraordinary tenderness, warmth and tenderness. It's a truly inspiring confrontation for the critical, blaming and shaming voice of the inner critic in your head, which I'm sure you know too. Read it and feel it - it's truly freeing.

The right to take care of yourself

Several years ago I made significant changes in my life. I raised my level of awareness about my mental and physical health and gave myself permission to practice uninhibited self-care when needed. This was different from simply acknowledging and accepting the limitations of my disability, which I had done before. I started writing my own rules and abandoned all external expectations. Sometimes this is not an easy road.

It's no secret that we live in a very dynamic society. The reality of toxic productivity can make prioritizing taking care of yourself a source of guilt. To alleviate this feeling, we often use the analogy of flying in an airplane when you lose altitude and your oxygen masks fall from the ceiling. The instruction is to put the mask on first before you help your companion, because if you don't, you won't be able to help him with his mask.

"Taking care of yourself is about prioritizing your health and not feel selfish about it."

To avoid excessive stress and burnout, you need to pay special attention to your mental health. Physical self-care includes taking rest breaks, getting enough sleep and staying hydrated and nourished. I'd like to add one more aspect to the list: the physical environment - it's also important to make sure that the spaces you work and live in support your mental and physical health.

However, when I think about the relationship of taking care of oneself and disability, an additional dimension emerges. First, I think that people with disabilities or chronic illnesses know how to take care of themselves on some level purely out of necessity. Creating routines to alleviate pain, providing extra time to complete daily tasks, and recognizing signs of burnout much earlier than an able-bodied person might, are examples of how every day is a day dedicated to self-care for some. And this is not due to indulgence. It is necessary.

Another challenge of practicing self-care when you are disabled or chronically ill is explaining your limitations to friends and family, especially if your skills have declined over time. For many years, I never wanted my disability to impede my ability to do things. Rightly or wrongly, my parents raised me to be as independent as possible. So once I grew up, they could not influence any of my decisions (unfortunately for them).

I was stubbornly independent, which led to a situation where my family and friends were not used to me being able to say "no," "I can't" or "I don't want to." But this was not good for me.

"I had to find words to express my needs, without detracting from my self-esteem."

Admitting one's limitations and setting non-negotiable boundaries was uncomfortable at first. I remember one of the first conversations of this kind with my dad. I had just gotten my driver's license and had been prescribed a handicapped parking card (my parents had never thought of getting this badge for me before, although I would have benefited from having it). So one day we were driving to the supermarket, and as he usually did, Dad was looking for a parking space far from the store. Then I carefully pulled the badge out of my purse and said: "Here, Dad, I have my hang tag. We can park closer."

To be honest, I don't know exactly what he was thinking about at that moment. Perhaps he was confronted with his own preconceptions about fitness and didn't want other people to think he was disabled, or he might have thought that using a hang tag was simply laziness. Because of my short stature, he carried me in his arms long after I was a toddler, so there's a slight chance he thought he could just carry me to the store. But I think even he knew that at my age of 16, this was not the best way out of the situation....

Despite what he was thinking, he circled the parking lot and returned to one of the available parking spaces. He didn't say anything to me. He simply took the hang tag from my hand and hung it on the mirror, parking.

Part of what made this conversation difficult was that my dad had certain expectations of me, that I would be the way he had always known me to be. At that point, I wasn't expressing that I wanted to be less independent. Instead, I just felt more comfortable using the access tools available to me as a person with a disability.

And so the next time we went somewhere, it was a little easier. I became more confident in granting myself the right to reach for what I needed. And I have a feeling that my father also became more aware that things were changing. I hope he knew that for the better.

This story about me and my dad is just one of many I can share that exemplify what can happen when disabled people are put in a box. We are set expectations and assumptions to work on, in addition to all the other barriers we face every day.

"Say no, even when you want to say yes"

For example, the simplest situation: deciding to leave a sink full of dirty dishes for tomorrow, while I would really like to start a new day in a clean kitchen. Or seeing how festively decorated my neighbor's house is, I want the same for mine. But ultimately, I accept that prioritizing taking care of myself in life - in my life - will involve new negotiations every day.

I'm at a point where I finally feel strong saying "no." When I say "no," I really mean it. I used to feel less valuable, ashamed in such moments. And today my intention is more assertive and I am more confident. Therefore, I think there is more understanding and respect on the other side of the conversation.

I don't define disability as limiting, inspiring or something to be "overcome." Instead, I challenge cultural stereotypes of disability as "lesser," "tragic," "broken" or "abnormal." I believe that disability is a natural part of human diversity, and I approach every aspect of my life with gratitude and grace. I am incredibly proud to be part of the disability community. I believe that we should be uncompromisingly proud of our lives - our lives of the DISABLED - if we continue to demand full and equal access and participation in all areas of daily life and society.