To the Woman who Aborted Her Baby with Spina Bifida

 

Dear Woman,

First off, let me say that I am not writing this on an impulse. In fact, I have given this a lot of thought and have decided to give this situation a “grace period” in which I could cool off, reflect, cry, pray, gain perspective from others in your situation, and allow myself enough time in which to answer you without anger or bitterness.

Of course, this time has allowed me to be more merciful and fair to you. But please know that I needed this time as much as you did. It’s not easy to for me to process my emotions about an issue that is so personal to me.

But, you E-mailed me asking for advice and answers. After choosing to terminate your pregnancy of a child with spina bifida, you want my advice, my insight, my wisdom, on how to have a “healthy” baby.

How’s this?

I have nothing to offer you. No advice, no answers, no wisdom, no tips, no magic crystal ball to predict what your next child will be like. 

My first instinct, upon reading your E-mail to me, was to hate you. After all, you managed to break down wall after wall of cautious, precarious illusion of self-esteem that I have spent 28 years painstakingly building. And for 28 years, it has worked for me.

 

Mami_baby

My Mami when she was about eight months pregnant with me. I am my parents’ only child.

 

When I first began blogging five years ago, I was moved by the many moms who contacted me. Most have had children with spina bifida, and some were pregnant with a baby with spina bifida, and wanted advice on how to handle the birth of a child with “special needs.” Or maybe they wanted solidarity; just the notion of knowing someone else out there in cyberspace can relate. I was elated at the idea of being able to help these women; give them a glimmer of hope for what the future held for their children. I offered them my friendship and unconditional support, and in return, I have been rewarded many times over by their reciprocity, their encouragement in my difficult times, and their genuine happiness at my triumphs.

Then I opened your E-mail. It’s as if five years’ worth of fortresses of support and encouragement from these moms and little white lies I told myself quickly eroded around me. I was exposed. Vulnerable. You shattered my illusion of invincibility.

I built a community of support and encouragement, of sharing knowledge along with the good, the bad, and the ugly about spina bifida. Women all over the world contact me to thank me for simply sharing my story, trivial as it may seem to many. Because the story of my normal yet fulfilling life gives them hope. It helps them to know their children can aspire to this.

And yet, I cannot help you, because you aborted your baby. You cut the common thread we would have shared. Now all I see is a large, dark chasm between us, because I am nothing like you. 

No, I am that child with spina bifida, the one you chose to abort. I look in the mirror, and I see the life that was discarded because it wasn’t deemed worthy of living.

And you ask me for advice because you don’t want your next baby to turn out like me.

And I am angry beyond words. Because in spite of all I have accomplished in my life, no one wants to have a child like me.

Not even my own mother would have wanted that. But she did.

 

Mami_me_crawling

I was about 18 months old in this picture. Whether or not Mami envisioned having a baby with spina bifida, she and I have always been thick as thieves.

 

And that, plain and simple, is what frightens me the most. That maybe, just maybe, your story and my mother’s are not all that different. You each won the lottery that no one wants to win.

I wish you well…and maybe next time, take a second glance at your lottery ticket.

The Sad Truth About ‘Selfies’ #NaturalDay

Disclosure: This post is not sponsored. I will not receive any compensation for writing/publishing this post. I am writing it of my own free will. All ideas and opinions are my own.

 

I’ve had a lot to say lately on the societal front. And I mean, a LOT. It’s no secret that I’ve always had my major gripes with society, and who can blame me? As a young, naïve, kindergarten kid, it was society that informed me that I was different, and not in a way that would be deemed “acceptable.”

It was children in our society that bullied, taunted, and tormented me, and it was parents of those children in our society that stood by idly, shrugging their shoulders, and letting it happen, while my parents made desperate phone call after phone call to plead on my behalf that they talk to their cruel kids. 

But maybe– just maybe, this wasn’t entirely their fault. Because other parents maybe stood idly by while this happened to them as they were growing up. They learned that some kids are just “born different,” and it’s okay to stand by while they get helplessly picked on because of something in their physical appearance. 

I’ve made some incredible friends in the past four years of being a blogger and online activist. Last night, while flipping channels absentmindedly, I grew bored and decided to join the #NaturalDay Twitter party, hosted by my awesome friend, Nadia Jones, of Justice Jonesie and the Niche Parent Network.

The party’s guest of honor was Sanah Jivani, a girl with an unbelievably remarkable story that I’m ashamed to say I’d never heard of until yesterday.

Sanah was diagnosed as a little girl with a rare disorder that caused her to lose her hair gradually. By the time she was in middle school, which is such a critical time in the human development process, she had lost it all.

The target of teasing and bullying, she decided to take a bold step– she took to YouTube and filmed a short video of her removing her wig.

It went viral. She received many supportive and encouraging messages, and she had found her calling. 

Sanah launched a project called “Natural Day” for today, February 13th. The purpose is to get everyone to go without makeup, wigs, or embellishments for one day. The request is simple, but it sends a strong resounding message about who we’ve become as a society. 

We are all smoke and mirrors. On instagram, we are all about filters. 

It’s sad to realize that, in an age so obsessed with “the selfie,” most of these self-portraits are actually staged– with lots of makeup, perfect lighting, and carefully-coiffed hair. Rarely is there any actual spontaneity in these images. And, as a result, rarely is there ever any truth. 

Watching Sanah’s brutally honest video, I can’t help but wonder what my friend Carly Findlay, an Australian blogger and badass appearance activist, would have to say about this topic. She has spent her entire life living with a condition that she can’t hide from.

In a way that might not be obvious to most, I’ve done something very similar with my body– I’ve tried to hide it. I’m reflecting on a post I wrote in 2011, Standing on My Own Two Feet, which I found excruciatingly difficult to write. 

I remember sitting at my laptop, eyes wide and wary, hands cold and clammy, as I hit “publish.” I remember refreshing my Facebook page what seemed like a million times as supportive comments pouring in.

I remember my eyes welling up with tears as I realized that people love me and accept me for who I am.

I remember feeling vindicated. 

So, for Sanah and so many others, here’s my own selfie. No makeup, hair slightly “done” but nonetheless in disarray. No smoke or mirrors– just me. 

 

 

NaturalDay

 

 

Who knows? If Sanah can do this– reveal her true self, little by little, maybe I can, too. 

 

I never go out without makeup on my face, so for me, let’s just say this is a good first step in the right direction.

Be sure to post your own selfies and videos without makeup and with natural hair today, using the hashtag #NaturalDay! And follow my girl Sanah on Twitter @SanahJivani.

We may be a society that is saturated with images of New York Fashion Week models that are rail-thin and wear excessive makeup and high heels, but we’re all human and we can grow. (To that end, did you see this awesome article in HuffPo about the first woman with a ‘physical disability’ to strut the NYFW runway? Check it out!)

Yes, these are all baby steps, and it’ll take a heck of a lot more than just a selfie or two to change long-held standards of “beauty.” But that’s what’s so fabulous about the internet.

It only has to start with one. 

 

For more of my thoughts on beauty and self-worth, please read “The Woman in the Mirror,” my post on the BlogHer ’12 Fashion Show, which I participated in as a model, as well as “Standing on my Own Two Feet,” which was chosen for BlogHer’s Voices of the Year in 2012. 

 

Love,

Laurita ♥

 

 

The Resolution to Resolve: Following Up on the Hilton New York

After I publicly denounced the Hilton New York last week for their gross oversights in wheelchair accessibility, something of a magical nature (as any blogger knows!) happened: I got a response. 

This past Wednesday, only a day after publishing Accessibility is Not Optional: An Open Letter to the Hilton New York, the Resident Manager of the Hilton himself, called me up and apologized for the whole mess. We spoke for almost an hour (!), during which time he repeatedly expressed his regret for all that transpired, and he also took the time to tell me about steps that the hotel administration is taking to ensure better access for all patrons.

One thing that I found really interesting is that some (not all) of the rooms already have a  system that causes lights to go on, illuminating your path on the floor when you get out of bed during the night. He also told me about some other key accessibility features, such as a vibrating pillow in lieu of a clock’s alarm and strobe lights for people with hearing impairments.

They are also working on a separate accessible bathroom, to be used only by patrons with disabilities, on the second and third floors where I spent so much time during the BlogHer conference.

Kenneth Jarka, the Resident Manager I spoke with on the phone, was kind enough to share with me an E-mail that was forwarded to him. It’s related to the elevator incident, and it was sent by the Director of Security of Paramount Group, Inc., the building that leases the space in question and that is used by the Hilton. Above is a screenshot of that E-mail, which tries to explain what happened.

While the changes described by Mr. Jarka are, indeed, very promising innovations, I feel it is still very important to hold the Hilton accountable, especially after an E-mail I received from a fellow blogger, who has been working on a story about this. The Director of Corporate Communications replied to her:

“There was a misunderstanding and everything has been since clarified with our resident manager who spoke to one of our guests who was affected by an elevator being out of service.  Our resident manager spoke to the guest for an hour this afternoon and everything has been resolved.  In fact, she was very pleased at how we handled BlogHer ’12 this year and praised various team members for doing their due-diligence and [taking] special interest in her situation when one of the elevators was affected and personally escorted her to an event on an other floor.”

Well, here, in turn, is my complete response to the blogger, in regards to Hilton Corporate’s statement:

I wouldn’t go as far as to say the issue has been ‘resolved.’ Rather, there is a resolution to resolve it. According to my conversation with Kenneth Jarka, the resident manager, they are putting systems in place to solve these problems. Unfortunately, I didn’t get the whole story while I was staying at the Hilton New York, but after my conversation with Mr. Jarka, here’s what I know: there is, in fact, a working elevator (and I’m told, it’s a nice one) that could have taken me from the second to the third floor for the events held in America’s Hall. Here’s the problem, though: the Hilton leases that space– they don’t own it. It is part of a separate building next to the hotel, owned by Paramount Group, Inc., and the security personnel was in charge of keying on the elevator leading to that space. Well, that didn’t happen– the security personnel in that building failed to do so, leaving me no other choice but to take the cargo elevator. 

My conversation with Kenneth was actually very pleasant, very honest on both our parts, and he genuinely apologized for all of the inconveniences and negative situations that took place. But I think the issue goes deeper than that– it is a matter of communication between the personnel at the Hilton and the personnel at the other building. 

On the bright side, Kenneth took the time to tell me about other innovations that have been made to ensure accessibility and comfort to all guests, and he welcomed suggestions I had that might make it easier for wheelchair users, in particular. 

While the initial feelings of negativity that I was left with after this experience are gone, I’m looking forward to an ongoing communication with the Hilton management in which I can hopefully express some of the needs of people with disabilities in terms of accessibility. I feel very encouraged as to where this is headed, but the Hilton New York– and no doubt, other hotels with similar issues– have their work cut out for them. Accessibility is an issue to be taken seriously by all corporations, not because we deserve ‘special privileges,’ but because we need certain accommodations to ensure we have equal access like all other patrons. 

According to the latest census, there are 36 million people in the U.S. living with a disability. That’s a huge economic power we wield, so we need to hold all businesses accountable to the standards set forth in the Americans with Disabilities Act.”

So, there you have it.  That is my somewhat-confused response to a very confusing situation. I think the real lesson here is that corporations are not single units. Rather, they are large organizations comprised by thousands of people, and while, as a corporation, they might share a core value or general opinion on an issue, for the most part, you will get very different reactions and interpretations from different people on different issues.

While the response from corporate left me feeling as though they are scrambling to do damage control (although my blog post was not written with the intent to “damage,” mind you, but merely to shed light on a problem), my conversation with Kenneth shall forever remain in my mind as a genuine attempt to make personal amends, from one human being to another. 

After all, why go through all the trouble of forming departments such as “human resources” and “corporate communications” and “guest relations,” if we fail to see the value in communicating and relating, one human being to another? 

And that’s what my conversation with Kenneth was all about. No statements, no agenda– just one human being chatting with another. 

I’ll keep you all posted as anything else develops. 

 

Laurita 😉