I smiled anxiously through my hellos as I cursed my sheepheaded stilettos, wondering why any woman at any point in the history of the universe said, “Hey, let’s wear these, ‘cuz we’ll totally look sexy and intimidate men merely by having them stare at our legs, because there is no better way I can think of to trigger that power play.” And the rest of us just said, “Ok.”
None of which is the point of this piece whatsoever – so I digress. But, thinking my toe-trauma was the ultimate pickle in the grand scheme of things, let’s say my head wasn’t in the most susceptible spirit to be…well…WOWed by a fellow partygoer.
Looking back, I can’t quite recall how our conversation started. Most likely, I was rushing out of the glitz, flashes, and perfumed-gloss-over-hugs to go ‘feed-the-meter’. AKA, grab a gulp of air and take off the heels for some glamour respite.
For the purpose of our friendly fairy-tale meeting however, I’ll assume Tatiana Lee (the protagonist of this article) flagged me down at my moment of exhaustion on the way out the door to compliment my pursecase (which is – for the record – how most of my conversations have started over the last couple of years).
Meeting Tatiana at that moment (the moment where, once out of sight, I was about to throw my shoes against a concrete wall) was like meeting a glass-half-full in person. With a tinker-bell-like presence, a perfected elevator-pitch, and a delightful compact entourage of family and friends, she stood taller than any other guest present – a coup even more remarkable from her wheelchair.
Tatiana is a model and actress living in Los Angeles with Spina Bifida which is a Neural Tube Defect causing her to be paralyzed. It affects thousands of newborns every year, and is the most common permanently disabling birth defect in the United States.
As I cursed my stupid stilt shoes I had chosen to wear to the ball, Tatiana guided me to a whole new attitude on patience and beatitude by just saying, “Hi. I love your purse.”
Months later, Tatiana crossed my mind – and my twitter feed for that matter – during Spina Bifida Awareness Month. Digihaute’s client, Dazana was fascinated by her continued storytelling of living and loving life with Spina Bifida as a role model and Hollywood fashion and beauty influencer, and afforded me the time to get to know Tatiana a little bit better, and to share a little more of what makes her such a recognizable force in a pint-sized package:
DH: This is my ice-breaker. Don’t give it much thought. Right now in this stage of your life – What is the meaning of life to you?
TL: The meaning of life for me right now is, living life to the fullest, with no regrets, and living for you and what works for you and makes you happy, and not for anyone else. Life is too short to live by someone else’s standards.
DH: Even after years of research, one of the prevailing FAQ’s that remains about Spina Bifida is – ‘Can children diagnosed with Spina Bifida grow up and lead normal lives?’ The answer is of course an overwhelming yes in most cases, but there is still a sufficient amount of taboo and third-degree that comes along with the condition. As a role-model and successful public figure, what would you add to those still asking these questions?
TL: This is a great question seeing as it was just Spina Bifida Awareness month and I make it my mission to bring awareness about it. Yes, people with Spina Bifida can live long amazing lives. Yes, things may be a little harder then the average person but who wants to be average? I sure don’t.
I love being able to stand out. We are no different then everyone else living their lives.
We date, we work, we want to be loved. I love fashion, makeup, hair, hanging with friends, enjoying life, and I know so many others with Spina Bifida that enjoy life just the same.
We are looked at as someone who can’t accomplish anything and we are worthless to society. That is far from the truth. I am working toward a successful modeling career because I feel my disability shouldn’t make a difference. Pop culture should appeal to all its consumers: Including us.
I would say to able-bodied people, “If you’re curious, ask questions, but do it in a polite way.” We aren’t slow. We do go out and about and live our lives. Don’t stare like we are a mythical creature. And please don’t tell us you’re sorry and it may suck to be us. We don’t need sympathy, and life is great for us just like it is for you!
DH: Speaking of role models, you are such a breath of fresh air, and your personality certainly draws people in immediately! Who did you look up to growing up, and who would you consider now as one of the most influential people in your life when it comes to your personal pursuit of happiness?
TL: Thank you so much, Ive always been a happy person and I enjoy so much meeting new people.
…..this is very interesting because one of the reasons I wanted to pursue a career in modeling is because I loved fashion and beauty so much, but when I opened a magazine no one looked like me. I want to change that for future generations. You still don’t see it that often. It’s even hard for me to book work but I will not give up!
I want to do this for the young girl who is in a wheelchair and/or crutches, that feels she isn’t societies ideal of beauty. Growing up I was happy. I saw women of color, but still no one in a wheelchair or on crutches. I looked up to Tyra Banks, Kimora Lee Simmons, Iman…and the list goes on. They were and still are beautiful and powerful and used their brand to accomplish so much and helped a lot of people along the way. That’s what I want to do.
AND Dazana was so enchanted by the Pint-Sized Diva, that every order you place online with them using code: DIVA at checkout, will give you 10% off, and we’ll donate that 10% to the Spina Bifida Association in Tatiana’s name!
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