In Case You Are Jealous of My Friday Night

People often comment on my Facebook posts (especially fellow ladies!) saying what a fabulous life I have. They see me gliding from event to event, effortlessly, cozying up to public figures and instagramming delicious food (and coffee drinks)!

I don’t blame you all for commenting, or even feeling a twinge of jealousy or resentment. It’s natural, and to be completely honest, the same thing goes through my mind when I’m instagram- or Facebook-stalking my friends and colleagues.

But, do you want the brutally honest truth? Because here it is.

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There’s A LOT that gets filtered out of my life when I post on social media. Like, a hell of a lot. When I publish a photo of me in a gorgeous dress with my hair and makeup flawlessly done at an event enjoying the company of others, here’s what you don’t see:

You don’t see/hear the laughably-inevitable meltdown/pity-party two hours earlier about not being able to wear the shoes all my other girl peers are wearing (heels, stilettos, etc.).

You don’t see the panic attack I’m having as I’m rushing to make it out the door on time and have to stop and raid every drawer in the house for urinary catheters. Since they are delivered and I need a doctor’s prescription, it’s not like I can waltz into a public restroom with a few quarters and get a catheter out of a dispenser. (But you can easily find tampons or condoms, no doubt!)

You don’t see the frustration I feel when trying to find the perfect purse to match my outfit— that is, one that is sleek enough to carry easily but that will fit at least 5 catheters (because when your LIFE depends on using a plastic tube every three hours, there’s no room for guesstimating. Better to overestimate than…God forbid. And if I have an infection…forget it.)

You don’t see me up all night with indigestion because my digestive tract is much slower than everyone else’s. That expensive dinner I had cost me a good night’s sleep.

But most of all, you don’t see the struggle it is as I try my best to “fit in” (say what you will about being an individual, but don’t kid yourself— EVERYONE wants to fit in) while treading the delicate balance of staying “healthy” (whatever that means, because I haven’t felt “healthy” in many years) and being able to breathe easy and have some semblance of a social life.

That all being said, I know how truly fortunate I am. I have opportunities that many of my peers with spina bifida do not. I don’t lose sight of that.

But, today is Friday. Tonight, God willing, I actually am going out on a Friday night alone (a rare occurrence!) to attend a social / professional function. Just a while ago, I got off the phone after talking to my medical supply provider and my urologist’s office back-to-back. It feels like I am constantly having to negotiate how important a life-saving product is to me. Negotiate how many times a day I am allowed to pee. Can you imagine having your visits to the bathroom regulated? These are questions I actually get from my doctor’s office. (They will actually insist I drink more water, and then ask me why I use so many catheters!)

Not to mention my private medical insurance, which makes me jump through bureaucratic hoops just to be able to receive these bare necessities.

I don’t want to be calculating. I don’t want to be counting catheters. I don’t want to leave half of my meal untouched because I’m afraid of indigestion. I don’t want to walk into the place and immediately scan where the bathrooms are. I don’t want to wonder where I’ll park my wheelchair.

Tonight, I just want to act my age, and know that I’ve earned it. Tonight, I don’t just want to LIVE, I want to feel ALIVE, and know that my posts on social media actually reflect the fabulous reality.

On Sitting Alone at a Starbucks on a Sunday

 

 

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Let me preface this post by stating that I rarely eat alone. Or drink alone. Or think alone. In fact, I usually hate being alone. In any situation. More often than not, being “alone” to me, means listening to my Pandora stations or binge-watching videos on YouTube. Even reading by myself is difficult to do.

 

But, today I found myself drinking a latte at Starbucks. Alone. Don’t misinterpret me. I needed this “alone time,” badly. I needed time to think and feel and wallow and assess and reassess and analyze and reflect. The thing is, the longer I sat at that Starbucks alone, yet surrounded by strangers, the more I realized I have been doing this to myself in many ways for a very long time. A very long time. 

 

I’m not an introvert, and I’ve known all my life that I thrive when being surrounded by people who love and support me, and who enjoy working with me.
So, what happened? Well, what usually happens? Life situations change, or people change. Or in my case, it seemed like both. At some point, as fiercely as I loved the people in my life (and I have the innate capacity to love fiercely and loyally), I realized I have long outgrown the dire need of acting like a 21-year-old. Why? Well, for starters, I just turned 29. My interests, though much the same as before, have evolved. I have evolved. 
 
I have long prided myself on purposefully seeking out friends who share my somewhat sophisticated, even precocious interests. I have always enjoyed spending time with the “grown ups,” and even as an adult, it pains me to say that I am quite often afraid of seeking out my peers. Perhaps it’s just “only-child syndrome.” Or, perhaps not.
So, the invites would come, and I’d turn them down out of cowardice or pure lack of interest in said activity. But the more invites I turned down, the less the invites came, and pretty soon, I began to feel isolated and ostracized. My closest “friends” felt more like strangers, and it made every single one of my attempts to communicate with them feel more like a confrontation.

 

It was then that I began to see it. Weekend after weekend of events I was not invited to. Social activities in my social circle I was excluded from. Friends who had been like family turning their backs on me.

 

I started feeling like I was back in grade school, or in high school, during those incredibly painful and humiliating years of ostracism and exclusion. As much as I’d like to say that I’m older and wiser now, and that I know better than to get caught up in the petty toxicity of social media, I wasn’t above it. I’m still not.

 

No matter how many times I would reach out to my friends, they would not reciprocate. My own invitations, my own attempts at repairing a grossly misunderstood rift, went callously ignored. And it’s nothing I hadn’t experienced before in my life, since early childhood.

 

It hurt. It bled. And whenever I would think I was already numb, another weekend would pass and the tears would begin to flow all over again.

 

Now, with open eyes and a heavy heart, I truly realize what was so simply yet accurately expressed in the film “The Jane Austen Book Club”: High school’s never over. 
 
Just because I quickly grew tired of the partying and booming music of my twenty-something peers, doesn’t mean I grew tired of them. 

 

But to my chagrin, I guess I’m still that girl. That girl who is forgotten when the sleepovers are planned. That girl who isn’t invited on road trips or to house parties or even Sunday brunches. That girl who has all but given up and now spends her weekends praying and spending time with those who truly adore her– her parents.

 

That girl who wants to change the world but can’t seem to find anyone to have coffee with on a Friday afternoon.

 

That girl, I see, has been proverbially sitting alone at a Starbucks on a Sunday all her life. Waiting. Hoping. Crying. Grieving.

 

The irony of it all is, this girl is often the envy of others who follow her Facebook page and complain about what a fabulous life she has.

 

I suppose since we tend to post about what we do and not what we don’t do, it’s an all-too-simple mistake to make.

 

Yes, I know I have an amazingly encouraging extended network– family and friends that live in other cities, other states, other countries even. Some, I have only met on social media! Sadly, most of these people are too far away for me to invite to lunch (or coffee!), but I will never stop appreciating their unconditional support and love. And yet, I still feel alone. 

 

That girl who is sitting by herself at the Starbucks, staring at a nearly-empty, now cold cup of coffee, is tired of waiting. She picks it up, throws it in the trash, and walks on.

 

The numbness has closed in on her once more. For now. But it’ll be back.

It’s never over. It never stops hurting. I’m never immune.

 

 

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.

 

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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.

 

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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.

I Don’t Always Have Spina Bifida

 

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Photo courtesy Macbeth Photography: MacbethPhoto.com
 My life consists of many awesome events…and many funny photos! 

 

 

Yes, I know. That’s quite the inflammatory title.

This is a topic I’ve been reflecting on for a long time. I’ve read many articles and posts on both sides of this argument. I’ve read posts from adults with spina bifida, and parents of children with spina bifida, who say that spina bifida doesn’t define them. 

I’ve also seen the other side of the coin, from parents who say that, indeed, spina bifida defines their children. 

One of the most interesting arguments I’ve heard for the latter point of view is from my friend, Mary Evelyn. Even when I don’t agree with her perspective 100 percent, she always manages to make a very sound, introspective and rational case. I can’t help but agree with her on this– to a certain degree. 

To be sure, even now, in writing this, I am on the fence on this subject.

Mary Evelyn, and all of those who agree with her, is right. To a certain extent, spina bifida will always define me and my life. It’s an integral part of who and what I am. I will never be able to shrug off the years, nay, decades, of how spina bifida has molded me into the person I am. The adult I am. 

But there is another side of this coin, I ardently believe, that deserves equal inspection. There are moments, even days, when I don’t feel like I have spina bifida. 

Do you know what I’m talking about? Whether you have spina bifida or not, perhaps you can relate.

I’m talking about those moments when I’m getting ready to go out, and I’m putting the finishing touches on my outfit– my earrings, my eyeliner, etc. I glance at myself in the full-length mirror, and I see…a beautiful woman. Not “a woman with spina bifida.” Not “a woman who has had several brain surgeries.” Not “a woman who is now struggling with lower back pain on a daily basis.” Not “a woman who has to self-cath every three hours in order to live.”

Just…a beautiful woman. 

When I’m out with my closest girlfriends, and having a glass of sangria or a cup of coffee, it’s not the woman with spina bifida they are out with. It’s the blogger, the social media consultant, the coffeeholic (more often than not), the grammar nazi who is constantly editing other people’s words as well as her own (I seriously can’t help it!).

 

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Other times, it’s the flirt (sometimes) who wants to get that cute server’s attention, or the wise counselor, when a girlfriend is struggling with a problem (I’m really obsessed with analyzing everyone’s problems, including my own!), or the goofball.

 

Goats*That awkward moment* at Disney when you can’t figure out why the goats love you so much…and later on you find the bag of edamame in your purse. -_-

 

 

 

In fact, when I’m among my closest friends, spina bifida is a topic that is introduced very rarely. I think, by this point, most of them acknowledge it in passing, the way you would acknowledge a person’s eye or hair color, or stature.

I’m also just as protective of my friends as they are of me…sometimes I’m the “older sister,” and sometimes they are. It just depends on the situation.

That isn’t to say that I feel ashamed of having spina bifida…but it does make me uncomfortable to be around people who barely know me and already feel the need to pepper me with a dozen questions I might not feel like answering at a networking event. Sometimes, I’ve made an unconscious decision to remove that particular hat for the evening…and that’s okay. I feel entitled to that. 

I’ll always be an advocate for the spina bifida cause. That won’t change anytime soon, I’m pretty sure. I’m committed to it, because I understand it. 

But if I paused to dwell on spina bifida every day, every moment, every second when I’m getting dressed or putting on makeup, or picking out my earrings…well, then, I’d never make it out the door on time.

The Power of Self-Acceptance Begins with You #loveurself

 

Disclosure: I was given a #loveurself T-shirt for participating in this campaign. I will not be compensated for publishing this post. All ideas and opinions are my own. 

 

There are moments when I’m looking at myself in the mirror and I don’t like what I see. In fact, I hate it. So much that I need to look away. It’s agonizing. 

What’s very difficult for me to remember during moments like these– is that I’m not alone. 

I’m pretty certain everyone has had moments like these, whether we choose to admit it or not.

What I also neglect to recall is that I am so much more than what is being reflected in the mirror. I am a person, a young woman, filled with potential, drive, passion, conviction, intelligence, humor, wit, compassion– and hope. 

 

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What do you see when you look at yourself in the mirror? Do you see any of those qualities? 

 When I was invited to participate in a fashion show at BlogHer 2010, I was forced to confront these questions myself. I confess, it provoked some tears when I thought of how often I was loathing my appearance.

I had written about this issue some time earlier here, about a subject that is still very painful for me to talk about.

Indeed, I find it very ironic whenever I receive compliments about my looks, because, while there are often times when I am admiring my appearance, a lot of my insecurities stem from this very same aspect.

I mean, where the hell was this pep talk when I was having a b*tch fit at Ross while trying on shoes that I knew I couldn’t walk in?

Yeah. That. 

This is why I felt compelled to join the #loveurself campaign. One of my deepest desires in sharing my personal stories is to encourage others to stop giving others power over their psyches. I know full well just how much headspace I’ve rented, free of charge, to these immature people who probably have a hard time facing themselves. 

As an adult, I feel I’ve been able to let go of at least some of this self-imposed, self-hatred. I’m not in high school anymore, and I don’t feel the everyday social pressures of having to face my peers everyday.

Instead, now I get to socialize– both online and off– with a wide variety of friends of different ages, genders, and stages in life. Many are parents or even grandparents, and have a lot of sage advice and encouragement to offer me.

I feel that it makes a huge difference to be surrounded by people who have achieved a level of maturity that sadly, many of your high school peers never will. That’s a hard lesson I’ve had to learn, especially when I always felt compelled to believe my peers. It’s one thing to know that someone is wrong– it’s an entirely different thing to actually believe it.

The truth is, I think I’ll always have a struggle whenever I look at myself in the mirror. It’s nearly impossible to erase all of the scars of years of teasing, bullying, and emotional abuse from mean-spirited classmates.

But my hope is that, in writing about this topic, and in publishing it, I’m taking that power back. 

I’m so done with giving others power over my self-image, because it’s supposed to be a personal thing, and a positive thing.

The journey towards healing is rocky and tumultuous. Nevertheless, it must start somewhere. 

And this looks like a pretty good place to start.

 

Love,

Laurita ♥

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. 

 

 

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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 ♥

 

 

Goodwill Exposé Shows Good Intentions, Bad Reporting: An Open Letter to NBC


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Yesterday, while finishing up my breakfast, my good friend Spencer Day messaged me, and tipped me off on a news story I hadn’t yet heard of.

It had to do with people with disabilities, so he guessed– correctly– that it would press my red-hot button. Not that he was looking to provoke me, mind you. I’m glad he shared it with me. It needs to be discussed.

 

On June 21, a story aired on NBC’s “Rock Center with Brian Williams” that left me agape. The in-depth report detailed how Goodwill Industries, a very well-known charitable organization known for giving “equal opportunities,” is exploiting its employees with disabilities by paying them far below the minimum wage and forcing them to prove their skills using humiliating tactics– i.e., timing an employee while he or she folds as many pieces of clothing as they can.

 

The report claimed that the employees’ compensation is positively correlated with the workers’ abilities.

 

That’s not even the whole story. 
 
You see, this report by the ever-charming Brian Williams was peppered extensively with negative rhetoric as it relates to people with disabilities (person-first language? Not here!).
And, it gets worse. The entire report focused on how “the disabled” are being used– and how Goodwill is taking advantage of “our most vulnerable” people.

 

*Sigh, puts down coffee mug* Where do I even begin? Pardon me, but I didn’t realize that those of us with disabilities belonged to society like some pet. We are not always “vulnerable,” and what’s more– we are not yours, mind you.

 

Brian Williams interviewed a well-spoken, poised older couple, both legally blind. She quit working at Goodwill after four years of putting up with the demeaning wages, while her husband still works there. It was devastating for me to realize that, while what they are doing is plain wrong, for many of these hard-working citizens, it satisfies the need for honest worka need that has left the employment shelves all but empty in a still-ailing economy, and a need which is notoriously difficult for people with disabilities to fulfill. It reminded me of the catch-22 that many immigrants to this country are placed in– the need for honest work versus the reluctance to be paid in peanuts. Sometimes, minorities can’t make that choice.

 

Of course, this doesn’t exactly make me want to rush off to my room and collect clothes for donation after watching this story.
But, here’s the bottom line:
 
If Goodwill’s disgusting behavior towards its employees with disabilities did anything to perpetuate already-prevalent negative stereotypes about people with disabilities, then NBC and Brian Williams pretty much finished the job by trashing us all the way into next year. 
 
Many of my readers probably think I’m being oversensitive, that this is only about the lack of person-first language in this news story. It isn’t. It’s about abusing the pity angle to sell the story of a group that is already beyond marginalized because we are pitied. 
 
Now do you see the hypocrisy of this situation? If the problem is that Goodwill sees people with disabilities as less-than-human, and ergo, cheap labor, then NBC did little to help our image by calling us “vulnerable.” In doing so, NBC is (unwittingly, mind you) giving Goodwill the power to continue treating its employees as sub-human. 
 
This news story would not be almost laughably infuriating if its very premise had not been to expose a perceived “wrong” reality in society– that people with disabilities are far too often taken advantage of. That may be true, in fact, very sadly, it is. 

 

In merely telling the story, NBC is trying to prove that they are better than Goodwill– the perceived villains for all of America who tuned in that evening to watch that report. And maybe they did do this story for conscientious reasons– I’ll give them that.

 

But in their storytelling, NBC and Brian Williams proved that they are no better than our societal oppressors– that they are just as ignorant of our real struggle in this world– the fight to be seen as equal, as human. 
 
Maybe NBC won’t read this blog post. Maybe they will. If they at least responded somehow, then, just maybe, they’d be showing a little more compassion than the two-faced charity they exposed.

 

Maybe even a little goodwill. 
 
 

“Your Determination Inspires Me” and Other Killer Statements

Recently, I’ve seen a lot of feedback from fellow advocates and activists in the disability community regarding what is now termed as “inspiration porn.” I figure it’s long been the giant, pink elephant in the room, so it’s high time I addressed it as well, at the risk of sounding redundant. Whenever an issue like this becomes too prevalent, I feel the need to add my voice to the shouting crowd.

Most of you know by now (I’d be very disappointed if you didn’t!) that I despise the term “disabled.” I believe it to be an ugly term that is unfortunately used to liken human beings to damaged, defective machinery.

Take a moment to read that again. The term “disabled” equates people whom it describes to damaged, defective machinery. 

Think about each time you board a plane and are subjected to all the safety instructions. What is one of the key regulations they always tell you?

“Please refrain from tampering or disabling the smoke detectors.” 

I rest my case.

So, what exactly does this all have to do with the so-termed “inspiration porn” frenzy? Everything. You see, inspiration porn is the use of photos of people with disabilities coupled with phrases like “never give up” or “no excuses.” 

What the hell does not giving up have to do with living with a disability? You have no idea how many times I’ve given up or wanted to give up something, for reasons not having absolutely anything to do with my having spina bifida. 

So, please, before you think of this as just another bitter diatribe filled with cynicism, allow me to break down for you why I have such a huge problem with inspiration porn: 

 

  • It assumes that everything people with disabilities do is supposed to be “inspiring.”

Do you know what it’s like to live up to that kind of pressure? I mean, that mentality is dangerous to the mental health of those of us with disabilities, because it implies that if, on any given day, we choose to give up– drop that class, end that relationship, gain those 10 pounds while on summer vacation– we failed. That’s right. Your paltry attempts at gleaming inspiration from us make it all the more challenging for us to live our lives– as normally as possible.

The harsh reality is that we all, at one point or another, give up. But, that’s okay. No, I’m not being defeatist here. I’m simply pointing out that we all fall and pick ourselves up, and that’s normal. So, why hold a select group of us to a very unrealistic standard of accomplishment when you simply can’t seem to get your own act together? Focus on yourself, and stop comparing yourself to others. Wasn’t that your mama’s advice to you in the first place? 

 

A meme I created a few months ago to portray the absurdity of the mainstream media-- and the general public-- in assuming our lives are "worse" than the lives of others. Feel free to share or re-pin!

A meme I created a few months ago to portray the absurdity of the mainstream media– and the general public– in assuming our lives are “worse” than the lives of others. Feel free to share or re-pin!

  • It also sets the bar very low for people with disabilities. 

 

Yeah, you read that right. Unless we’re playing wheelchair limbo, there’s no need to lower your standards for people with disabilities. That’s insulting.

When I was preparing to graduate with my Associate’s Degree, I was so thrilled after participating in the graduation ceremony rehearsal. After all, I was taking the next step in my academic career. I’ll never forget the douse of cold water I received, from a college administrator no less, when she congratulated me– because I was able to walk across the stage. Of course, I’m sure she didn’t realize that I’ve been able to walk since I was two. I don’t think about it anymore. 

My offense to her condescending remark was two-fold: First, it implies that there is “something wrong” with not being able to walk. So, I took offense on behalf of all of my friends who aren’t able to walk. Does it make their lives any less fulfilling? I think not.

Second, and most important to me, I was celebrating what was, to me, a great accomplishment– I was halfway done with my undergraduate education, and all she could focus on was the fact that I walked across the stage. Well, thanks, lady! If I had known the bar was set so low for me, I wouldn’t have bothered with two and a half painstaking years of hard work and sixty-plus credits. I needn’t have tried so hard if all it would have taken to  consider myself a “success” was take five or six steps across a stage. 😉

Think carefully about the remarks you make, or hear others make, to people with disabilities. “I’m so proud of you for going to college.” “You got a job? That’s incredible! I didn’t know people like you could work.” “I can’t believe you danced the entire night.” “Wow, you downed that mojito in record time, even with spina bifida!”

Yep, I sure did. And I enjoyed every last sip. Make one more comment like that, and you’ll force me to have another. It’s on you. 

 

  • It overlooks the fact that you can be inspired by people without disabilities. 

Sure, you think it’s wonderful that I can push my wheelchair all by myself, but did you ever stop and admire the single woman who is struggling to raise three kids while working full-time? Maybe even while in poor health?

Oh, that’s right. Her “issues” aren’t as obvious as mine. It’s completely disingenuous to assume that my accomplishments are somehow more kick-ass than the achievements of someone else, just because my so-perceived “obstacles” may be a little more noticeable. In fact, I’ll come right out and say it– it’s downright hypocritical. Granted, I realize I’ve dealt with more than my fair share of adult issues, even during the first ten years of my life. But that’s not my entire life, and I’m sure that if you instead focused your attention on the accomplishments of real heroes– the young woman who has been working at her family’s non-profit since she was a teenager; the young man who just made a documentary about homelessness; the young woman who took on her school board so her child with autism could enjoy quality education– you’d realize that your emotional energy is far better spent on genuine admiration rather than condescension.

 

  • It ignores the fact that it’s okay to not get a gold star each time we accomplish a simple task, like making our beds or getting an assignment in on time. 

That being said, like anyone else, we’re human. We love being congratulated for the same milestones that others like to have recognized, too: graduations, birthdays, weddings, having a baby, getting a job or promotion, or receiving an award. We just don’t want– or need to have The Disability Angle thrown in our faces every single time.

I’m genuinely happy whenever I do something that inspires someone for a legitimate reason. I love inspiring people to live up to their potential. I just don’t wish for people to think that somehow, my potential is less than theirs. That would be a costly mistake. 😉

And if any of you ever have any questions or concerns about what is usually considered “acceptable” by a person with a disability, I’d be happy to chat about it. You know where to find me– I’ll be sipping my mojito like a champ.

 

♥ Laurita

Can Beauty Sense Trump Genetics? ALLERGYFACE™

This post is part of a sponsored campaign on behalf of Latina Bloggers Connect and the makers of ZYRTEC®.

 
People say you can’t escape your heredity, your genetic fate.

 

Years ago, my parents told me the story of a conversation they had while they were still dating. Both Mami and Papi were prone to severe allergies, and their relationship was already heading towards marriage.

 

“You know,” said Papi, “When we have a child, he or she is going to be extremely allergic.”

 

“That’s true,” Mami said, in response to his observation. “Pobrecito.”

Ever since I can remember, I’ve been plagued by my genes– both a product and a victim of a genetic predisposition to allergies. Both my parents are prone to both seasonal– and year-round– allergies, as is my grandmother. Indeed, noses “run” in our family!

When I was about five years old, I was tested to find out just how prone I might be to developing allergies. While I don’t know all the specifics, I remember my parents telling me that a score of 100 was considered “normal,” and anything above 100 wasn’t. 
 
I scored above 800. Holy moly. Indeed, my heredity had totally betrayed me.

While there is little I can do to prevent being allergic to certain things– like shellfish, or the pollen of many different trees– there’s a lot I can do to prevent allergies interfering with my life. Almost every day, especially during the spring allergy season, I take an antihistamine like Zyrtec to help alleviate some of the symptoms like sneezing and itchy, watery eyes.

But when it comes to disguising those annoying symptoms, I hardly know what to do. This is why I’m so excited to participate in Zyrtec’s ALLERGYFACE™ campaign, which has taught me a few tricks of the make-up trade to help conceal when allergies are getting the best of me.

 

Allergy-Face-Logo-Vector-File-e1363196478621

 

A few musts for me on an allergy-prone day are: using eyedrops, avoiding any strong perfumes, and avoiding the use of eyeliner, as it tends to bother me when my eyes get itchy.

 

Fortunately, Zyrtec has partnered with beauty and fashion expert Carmen Ordoñez of Viva Fashion blog to bring us all some great tips for disguising that dreaded ALLERGYFACE™. This will be a three-part series on YouTube.com/Zyrtec featuring the best tips for disguising your allergy symptoms.

 

Watch the video below as she takes us through some ideas to hide puffy face, watery eyes, and a red nose.

Stay tuned for the release of parts two and three of Carmen’s video series, to be distributed in the summer and fall, respectively. 

A big thanks to Zyrtec and Carmen Ordoñez (@VivaFashion) for giving us the tools and know-how to put our best face forward– even when we’re not feeling our best! Take that, ALLERGYFACE™!

 

At least that’s one victory for me in the battle against my genes! 😉

 

What’s your story about how allergies have affected your life? Do you have any tips for combating ALLERGYFACE™? Don’t forget to Tweet using the #ALLERGYFACE and #ZYRTEC hashtags on Twitter, and “like” ZYRTEC on Facebook to join the conversation.

 

–Laurita :)

 

10 Things About Me That Might Shock You

Okay, I really, really didn’t want to have to do this. Don’t get me wrong– I think some people’s naiveté is so gosh darn cute!

But lately, I’ve seen an onslaught of “disability is so-frickin’-inspiring” stories that have made me roll my eyes and, sometimes, want to log out of my computer for a while. :(

So, whether you’re ready for it or not, here’s the truth– the brutal truth. Granted, some of it may upset you, but I’m okay with that.

 

1. I don’t cry myself to sleep at night, lamenting that I have spina bifida. 

I hate to break it to you, but most nights, I crash into bed and sleep, non-stop, for eight hours or so, after either blogging till the wee hours of the morning, or watching a funny video or doing something else that helps me unwind. So do many of my non-spina bifida peers.

 

2.  I drink. 

Yep. I don’t mean the “stumbling-out-of-Walgreens-at-3-a.m.-after-buying-a-cart-full-of-junk-food-and-tuna-fish” drinking, but yes, I drink socially. I always drink with trusted friends, or family members around. I never put myself in situations where the person I’m riding with has been drinking. That’s just not cool.

 

3. I don’t just automatically become BFFs with everyone who has spina bifida, like me. 

It just doesn’t work that way. I love connecting with others with spina bifida, of course, and many people do befriend me after visiting my blog. But I don’t necessarily “click” with everyone who has spina bifida, and that’s fine. It would be like saying, “all Latinos have to get along,” or “all African-Americans have to get along.” Are you kidding me? What century is this?

 

4. I have many friends who don’t have what is perceived as a “disability,” and we have a great time together. 

I’ve been blessed to meet people at so many different events and conferences. Most of them have very different characteristics, and you can’t lump them into one category. I love that! When I meet people for the first time who only know me through blogging/social media circles, I am often struck by how insignificant my “disability” is to them. It’s because they met me online first, without seeing the wheelchair or other things that people might otherwise see first. They value me for my qualities, and I value them for theirs. We have intellectual conversations. We have inside jokes. We have a true bond.

 

Coffee = Bliss. :)

 

5. While romantic love would be nice, I don’t necessarily seek out people “just like me” as potential partners. 

Yep, it’s true. Believe it! I don’t aspire to a “matchy-matchy” relationship where my partner has spina bifida just like me. I look at intellect, personality, common interests and future goals as criteria for potential partners, and not their physical abilities/disabilities. I expect the same from a potential partner, too. I don’t want to be disqualified because of a perceived “disability.” It’s always a mystery why certain couples are attracted to each other. I don’t think I’m supposed to question why “some opposites attract” and others don’t. Please, don’t question me, either.

 

6. I can open doors, tie my own shoes, go to the bathroom on my own, fix myself a sandwich, etc. etc. 

While my cooking abilities are still questionable (LOL!), I do a lot of things for myself, on my own. And I’m still learning. Aren’t we all?

 

7. I can probably out-spell and out-edit you, or anyone you know. 

Writing is my thing. Spelling and grammar are also “my things,” I suppose. Name the time and place. Chuck Norris and I will be waiting.

 

8. I use a wheelchair part-time, when needed. And hardly ever inside the house. But I can dance like nobody’s business. 

I’m not talking Gangnam Style here, but I like to think I can salsa dance circles around most people. 😀

 

9. I suck at giving directions. No seriously, I can’t find my way out of a paper bag. 

During road trips where my father asks me to read a map, I usually toss the map away and reach for Google Maps on my iPhone. Siri is becoming my best friend, a.k.a. navigational device.

 

10. I don’t just think about the spina bifida cause 24-7. There are so many wonderful causes that deserve my attention. 

I love social good, and I have a feeling that I live for social good. Whether it’s through a blog post, a Tweet, a Facebook update, or a donation, I enjoy supporting many different causes. I feel strongly about supporting LGBT rights, charities that give to the poor, the homeless, the hungry, and organizations that help children and adults with different chronic conditions. I think social media provides us with some of the best tools ever to support and spread the word about great causes. It’s awesome, because social media makes it easy for us, so we don’t have to choose just one cause to throw all our support to.

 

 **Bonus Tip/Fact: If you ever need a favor from me, try bribing me with coffee.

Nine times out of 10, it works. And the other 10 percent of the time is unaccounted for. I just made it up. 😉