SheCon at Miami, Part Deux (I couldn’t make this up if I tried!)

Given several seemingly random events in my life, it has always boggled my mind how a journey isn’t over until God says it is. Today, as my always-efficient parents went into a packing frenzy, I selfishly sat in a depressed daze, pitying that SheCon had ended.

Little did I know that my journey was just beginning.

Allow me to backtrack now for a bit, so I can share with you some events that occurred yesterday (Saturday).

After returning to our hotel after a morning spent pitching the spina bifida cause to attendees at the expo hall, I checked Twitter to find out what was going on at the conference, so as not to miss out on anything. (I searched the “#shecon” hashtag.) I read a Tweet from a fellow blogger, saying that Lindsay Lohan was doing a photo shoot at the Raleigh Hotel in South Beach. I turned to my parents.

“Where’s the Raleigh Hotel?”

“It’s the one right next to us!” said Papi.

Before he could finish his sentence, Mami was already at our window (we had a corner room on the ninth floor), and she noticed some people setting up for a photo shoot.

Mami asked if a girl with dark hair wearing a straw hat was Lindsay. I turned on my Sony Cybershot and used the zoom to get a closer look. It certainly looked like her.

Then, a moment later, I realized it was her younger sister, Ali. I realized this only because Lindsay herself had come out of the penthouse suite, and had walked onto the terrace wearing a beautiful billowy, pastel-print dress, over what looked to be a swimming suit.

I started snapping away hastily, but apparently was able to get a few good shots of her, over a span of maybe 15 minutes, before Lindsay went back inside her suite.

The irony had not yet hit me that I was shooting photos of a photo shoot! It was such a beautiful scene, with the ocean in the background, very reminiscent of a scene in “Titanic” except with a sea goddess.

In my haste, I Tweeted a couple of the photos. It didn’t take ten minutes for me to get a message from a photography agency wanting to buy the photos from me!

As it happened, the paparazzi had been surrounding her hotel, trying to get a good shot of Lindsay, but they didn’t have a good vantage point.

What’s more, after such a long battle with addictions and the negativity surrounding her, it was refreshing to see Lindsay actively trying to get back on track.

It was beyond surreal to me that I was being contacted by the paparazzi for photos that I took from a privileged point of view, when I just happened to be in the right place at the right time (as usual when these things happen to me)!

In order to sell the photos, one of the conditions was that I remove these photos from any and all social media sites. Damn it. Oh, well. You’ll take my word for it…right?

This morning, I met with the Paparazzo (I won’t name him just now!) to share the photos and sign my contract. He was actually very impressed with the quality of the photos! They appeared as if I hadn’t been shooting from behind a window.

I spoke to him for a while about my cause (of course, I had to take advantage of this golden opportunity!). Since he has developed good relationships with several celebrities, he even suggested I draft a letter to some of them, and he would deliver them in person! Whoa.

After my business meeting with the photographer (who was convinced that LiLo had checked out from the Raleigh Hotel, since she hadn’t been spotted since then), I headed over to the Expo Hall to chat it up with a few conference attendees. I shared my mission with a very receptive group of people. All from very different walks of social media life, they offered suggestions and pledged to support Holdin’ Out in whatever ways possible. I left with a very positive outlook.

Back at the hotel, we checked out and needed to find a place to have lunch. One of the Shelborne’s very attentive staff members suggested having brunch at the Raleigh, which is a trendy spot in Miami. So we took his suggestion, and treated ourselves to a leisurely brunch (and my long-anticipated mojito!), served out on a terrace by the pool.

As we were finishing up our brunch (did you see that coming?), Ali Lohan strutted out of the lobby and out to the pool area. We gawked. Hadn’t they checked out? Ah, well. It’s not like I would actually approach her…right?

So, we took a stroll around the hotel patio, and I stood near the pool as I went over all the possible scenarios in my mind. And then– she passed right in front of us. Lindsay. This would be my moment of truth. I decided it would be better to be blown off by Lindsay Lohan than to not try at all!

I made my move before she got comfortable in a lounge chair. A timid voice that seemed to come from inside me spoke, and said, “Excuse me, are you Lindsay?”

The blonde girl in a loose black top, jean shorts and gladiator sandals replied, “Yeah.”

“I’m Laura,” I said, “Would you mind very much if I took a picture with you?”

Lindsay looked around furtively and said in a husky voice, “Yeah, sure.” So we took a quick shot.

With Lindsay. She was a sweetheart!

Then I said, “Thanks, real quick: I’m promoting awareness of spina bifida on my blog, because it’s so common, and yet it doesn’t get any media attention.”

She almost cut my off to say, “I’ve heard of it.”

So, this was it. “Will you please check it out?”

“Yeah, I’ll check it out.”

“Thank you so much! God Bless you!” I said.

I turned around and left with a sigh of abject satisfaction and glee.

Later that day, as we began our long drive home to Orlando, I got a series of strange phone calls. About three different numbers called my cell phone and it somehow got cut off or they hung up. I shrugged it off. Then, I got a text from Paparazzi, saying something about Lindsay Tweeting my blog. I searched like a maniac for her genuine Twitter handle, and found this Tweet:

Holy moly!!

I clicked on the link, which led to…a photo of my business card! The pic that she took was of the side with my E-mail address, my Twitter username, my Facebook page, and…my phone number! Hence the strange calls. LOL.

Hey, all for The Cause’s sake.

Lindsay is a person who I probably wouldn’t have imagined reaching out to, not because she doesn’t do charity, which I know she does; but rather because of her complicated personal life. But whatever led us to have lunch at the Raleigh today, it resulted in a successful contact. She Tweeted my info. More people are following me on Twitter now, and have friended me on Facebook! Some commented on my blog.

I’ve profiled on this blog the entire gamut of celebrities and politicians. I’ve sent the letters. Some of them have led me by a polite response to believe they would actually help. Others have been far too involved in their personal affairs to extend even that courtesy. So even if Lindsay didn’t need to get up from her lounge chair to do what she did today, the fact that she consciously chose to do that, means everything to me. And that makes her my hero.

And the fact that it was Lindsay Lohan who did this, matters to everyone else.

I no doubt wish her the absolute best in her life, and will be praying for her to make an awesome comeback! That’s why I handed over the photos– because they represent a strong, resilient, and very beautiful Lindsay, who believes in herself.

At least, that’s the one I’ll see every time I think back to these remarkable events.

Love,

Laurita ♥

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Because I Said I’d Blog from SheCon!

As a blogger of nearly two years, I should know better by now. But it seems every time I go on vacation, I promise to blog, even under the craziest of circumstances! For instance, I didn’t even know until today where to find my login and password for the Wi-Fi access. That can present a problem when you’re at a social media conference in Miami and you’re dying to share the news of what’s going on with your readers!

Well, wait no longer! Even if I won’t be able to cover all the juicy details in tonight’s post, I will go over a few highlights. I promise to share even more with all of you in another post, once we get back home and settled in (ugggh) Orlando. (No offense, but I’ve just gotten used to waking up, dragging the curtains back and gawking at a corner-window view of the ocean, ‘kay?)

Papi, Mami and I left Orlando on Thursday morning and arrived in Miami about 4 hours later. The ride was pretty boring almost all the way (clearly not the scenic route!), so we were more than eager to check-in at the Shelbourne Beach Resort.

Friday was the first official day of the conference, and I was so excited to arrive at the Miami Convention Center. Mami (who has ended up attending the conference with me!) and I listened to Keynote Speaker Guy Kawasaki’s electrifying talk about “enchanting” people, and he signed copies of his book for all of us!

After meeting Mr. Kawasaki and telling him about Holdin’ Out, I had an emotional reunion with my friends Blanca and Jeannette. Blanca was moderating the Social Media & Diversity panel, and Jeannette was one of the panelists.  To my sheer surprise, Blanca asked me to join the panel! So, flying by the seat of my pants (as I often do), I joined Jeannette and Maria in sharing our knowledge, views and experiences in diversity as it relates to the blogosphere.

Blanca, Jeannette, Maria and me at SheCon for the "Social Media & Diversity Panel."

I did a lot of networking in the expo hall, too. The expo is pretty small, and there aren’t too many exhibitors, so I’ve been able to visit almost every booth, share my business card, and talk a bit about my spina bifida awareness mission. I think that the “smaller conference” aspect has worked to my advantage, as people aren’t as overwhelmed by conference attendees.

One particular experience in the expo might land me on TV! Lifetime Television had a booth at SheCon and was interviewing women bloggers on Friday for their morning show titled “The Balancing Act.” When I made my pitch to the people at the Lifetime booth, one of them immediately jumped up, ran over to the producers, and came back to me, saying that reporter Kristy Villa, one of the show’s hosts, was going to interview me! I’m posting photos of the experience, and will be sure to share any information about when that segment will air once I hear from them.

Being interviewed by Kristy Villa for "The Balancing Act" on Lifetime! WOW!

Kristy and I after she interviewed me for Lifetime Television!

Well, it’s been an all-too-short, insane, but memorable weekend to say the least. I must go to bed now, as tomorrow is the final day of the conference, and I sure don’t want to spend it sleeping in.

More to come! Be sure to check back for updates this week!

Love,

Laurita ♥

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This Week’s Rundown– I Need a Schedule!

Every time it seems I’m about to settle into a routine, something comes along to turn my “schedule” upside down. The truth is, right now, I don’t have a schedule. I have a calendar on which I write down potential opportunities as they present themselves, but I don’t really wake up in the morning knowing exactly what I have programmed for the day.

So, what I really could use is a secretary. Any takers? Yeah. Didn’t think so.

On Saturday, I attended Orlando Mayor Buddy Dyer’s 6th Annual Neighborhood & Community Summit at the DoubleTree by Hilton Orlando Hotel. Even though I had to be there by 7:30 a.m., I jumped out of bed with a [partial] smile on my face, because I knew in my heart, it promised to be an exciting day.

During one of the time slots, I went to the “Ask Your Mayor” session. I didn’t hesitate when I asked Mayor Dyer his thoughts on Gov. Rick Scott’s recent cuts to disability programs. He immediately expressed disdain and disgust for the governor’s harmful policies, and stated that he was certain those cuts would jeopardize Florida citizens. At least, there is no doubt in my mind that he is on our team.

I could not leave without making sure that the Mayor and his staff members had my business card. I also made my “elevator pitch” to them, meaning I plugged Holdin’ Out and the spina bifida cause big time. 

With Orlando Mayor Buddy Dyer!

With Orlando District 2 Commissioner Tony Ortiz, whom I first met at Relay for Life, and Juan Triana, and Juan Triana, Neighborhood Champion Award nominee.

As some of you might know, right now I am preparing for a trip to Miami (although I won’t say it too loudly!) to attend SheCon. You might recall what happened the last time my family planned a trip to Miami, and for a blogging conference, no less! I’m going to see if I can’t fit a few more necessities into my luggage, namely: a four-leaf clover, a rabbit’s foot, and a Rosary. (Probably not kidding about the Rosary!)

During the Mayor’s summit, I made a new friend, and she told me about an upcoming blogger event I hadn’t heard of– and which is very close to home! So, now it seems I’ll also be attending the Central Florida Blogger Conference in Maitland. I’m so excited about this one-day, no-travel-required, very-affordable event, which will hopefully be one more venue where I can promote the spina bifida cause.

And now I want to tell you briefly about a wake-up call I received. I got a phone call today from a young woman who was referred to me through a mutual contact, and whose daughter has spina bifida and is in those trying young adult years I’ve written about before. We were on the phone for over an hour! It seemed that, in talking to me, this mom was able to get a first-hand perspective of what those years are like, socially, emotionally, and in other ways. Before we ended our conversation, she thanked me over and over, and blessed me, for listening and talking to her.

So, I want to leave you all with this thought: I started off by saying I needed a “schedule,” but today’s phone call and the heartfelt exchange that followed showed me that God had other plans for me. Instead of just handing over my business card at an event for professionals and speaking to the bigwigs, I comforted a distressed mother. It’s easy to forget your true purpose when you’re busy chowing on chicken and risotto at a Hilton, but I’m glad this young woman reminded me that I live to serve, and not to be served.

Love,

Laurita ♥

P.S. I really missed being able to put a “heart” at the end of my sign-off. Thank you, WordPress!

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Lights Guided Me Home

I can’t tell you just how amazing it feels to be “home” at last! No, I haven’t taken a trip recently, but if you’ve been following all my latest posts and updates, you know that I’ve been in the seventh circle of technological hell, and I thought I’d never escape. With unreliable hosting and constant connectivity issues at home (and many people not finding my site), I felt I was roaming cyberspace alone, a technological nomad with no place to call my own.

It fills me with joy and relief to announce that, as of Monday evening, those days are behind me! I’ve found hosting once more where I always knew I belonged– WordPress.

These past few weeks– no, months, have launched me into a whirlwind of new responsibilities– and possibilities. Many of you who have friended me on Facebook have no doubt seen my status updates and photos of several events I’ve attended, such as the Hispanic Business & Consumer Expo, and other functions in my community. At every function I attend, I make it my priority to promote awareness of spina bifida.

Pedro Silva, Daniela Sánchez, and Homán Machuca of Telemundo with me at the Hispanic Business & Consumer Expo!

With my friend Yisel Tejeda, of Telemundo and fellow NAHJ member, at the Expo.

I even ordered new business cards, and their main focus is this cause, this Web site. I hope that my new Web presence, coupled with a nice new card with all the information on Holdin’ Out, will increase both readership and interest in this initiative.

A week ago, I had the opportunity to volunteer at the 2011 Relay for Life in support of an organization I’ve recently become involved with, Hispanic Young Professional Entrepreneurs, or HYPE Orlando. As part of its commitment to serving the community, HYPE members formed their own team and walked in the relay, which raises funds and awareness of cancer. I had actually never been to a Relay for Life event before, and didn’t know what to expect.

Photo credit: HYPE Orlando

It actually didn’t take long for me to feel overcome with emotion and inspired by the dozens of people who were walking for their friends, their relatives, for people who had passed away, and people who were survivors and participated in the survivor lap. Then, it hit me. I started to think of my beloved Abuelito, my Mami’s dad, who passed away almost five years ago after a long battle with prostate cancer. He was the only grandfather I had known, and to this day, I can’t seem to wrap my mind around the fact that I’ll never see him again in this lifetime.

As dusk soon gave way to the dark of night, the luminaries that lined the track, votive candles placed in paper bags that had been lovingly decorated in honor or in memory of different people, were lit.

Light in the midst of darkness-- and HOPE.

As I watched the participants trace the track at different times, it was an amazing sight to see from a distance the lights of all the supporters guiding their way on the dark pavement.

And now, here I am, after months of virtual darkness, when I thought I would never get my Web site back to what it was before. Now, in its sheer simplicity of design and function, it feels like it’s exactly where it should be for now. I don’t know that I’ll never change it again. I can’t promise that, because I can’t say with certainty what I think the needs of Holdin’ Out will be in the following weeks or months.

A very big thank you is in order. There were many people who reached out to me and offered technical support during my most desperate, and darkest, hours. To all of you– I can’t thank you enough. Thanks also to all who have lifted my spirits and kept me believing that I could continue with this mission.

We can’t always make out what the path looks like from a distance, or where it will lead us. We can only hope to follow the light of the next candle, then the next candle, then the next.

Thanks for holdin’ out for me!

–Laurita

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Details on SBA’s 4b4the4th Campaign

4b4the4th4download

Hello everyone! I’m writing this brief update to share a vlog (video blog) made for YouTube in support of Sarah Mueller, who is a Team Captain for the Spina Bifida Association’s 4b4the4th fundraising campaign.

If she raises the most funds between now and July 4th, 2011, Sarah will be chosen to attend next year’s (2012) SBAA conference! She has never attended, and it would be a wonderful opportunity for her to gather information which she will then share with all of us via her own vlogs.

Please show your support by sharing my video with everyone you can, and also (if you are able to) by making a donation of ANY amount in Sarah’s name.

Simply click this link (or the one prior to this one!), fill out the form completely, then near the bottom of the form, choose the name “Sarah Mueller” from the drop-down menu displaying all the Team Captain names.

I have been very blessed by the support all of you have shown me in the past nearly two years, and I really want to pay it forward by supporting Sarah in this project!

So, please share the video and show your support by sharing this post on every social media site you can think of. And, donate, donate, donate!! We all stand to gain from this.

Love,

Laurita 😉

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“Is this thing on?” : Technical difficulties & highlights in my ongoing campaign

I hope you all enjoyed a very Blessed Easter with your families and loved ones!

When I promised to blog at least once a week, I couldn’t foresee the challenges that were soon to come my way. To begin with, I found out last week that the department for which I worked as blogger for Marquis Healthcare has been cut, and so my boss and I, as well as another employee, were laid off. It was, of course, a huge bummer, since I have had nothing but wonderful experiences with the Marquis team.

But, I still firmly believe that everything happens for a reason, and during that time, I established connections with people that I am confident will endure.

Another recent, and if possible, even more frustrating, dilemma I’ve had is that our Internet at home right now is “intermittent.” This basically means I can log on for about thirty seconds (or less!) and then, it’s gone. It’s been like that for almost a month, and the problem has escalated these past few days. My family and I are hoping that our Cable/Internet company will fix the issue soon, but for now, I can only rely on those brief moments when the Internet works, or else I have to grab my laptop and take it somewhere that has Wi-Fi.

I think every piece of bad news should be followed with a piece of good news, don’t you agree? The Spina Bifida Association of America recently profiled me in their latest edition of e-Insights! While getting the attention of this national organization has been difficult for me, I am both honored and humbled to now have their official support. You can read their the SBA’s article about me here.

I’m also excited to announce that I will be partnering with my friend Sarah Mueller in raising funds for the SBA! You might remember Sarah as a guest blogger on this site. Her letter to AirTran Airlines following a humiliating experience while traveling has generated over 20,000 views for Holdin’ Out for a Hero! It is this ability to rally the public to her side and explain her mission so coherently that has compelled me to join her efforts. From now until the Fourth of July, the SBA is having its 4b4the4th annual fundraising campaign. (Read more about it at the link.) Several “Team Captains” have volunteered their time and effort to help raise money, and the Team Captain who raises the most funds will be sent to next years SBAA conference!

So, it should come as no surprise to you that I am officially endorsing Sarah Mueller as our Team Captain! Sarah has never been able to attend the SBAA conference, and, should she attend, she hopes to garner valuable information which she will then share with us via vlogs (video blogs).

I sincerely hope you will join me in supporting Sarah, as she has been a valuable supporter of Holdin’ Out, and is an incredible asset to the spina bifida community. Below, please watch a vlog she recorded to explain further details on how you can donate or help spread the word. Make sure to please share this video with everyone you know, and on every site you can think of!

Before you go, I’d like to share a tiny glimmer of hope with all the supporters of my cause. A little over a week ago, I received an E-mail from CNN anchor Soledad O’Brien! She mentioned that she would like to schedule a time to speak with me. Although I have no idea what she will suggest, she offered her support in helping me get the word out more effectively. I’m thrilled at having received a reply from such a prominent member of the media! You might or might not recall that I’ve met Soledad on a number of occasions at NAHJ events, but we really haven’t gotten to talking for very long. I’m humbled and encouraged by her response. As always, if anything comes of this, I will definitely let you all know. *Fingers crossed*

For now, let’s focus on making Sarah’s video go viral!

 

Love,

Laurita 😉

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State of emergency: Gov. Scott betrays people with disabilities

The same day Florida was pummeled by severe storms, Republican Governor Rick Scott took time out of his busy itinerary to participate in a truly heartwarming event.  The Tallahassee Democrat reported yesterday (Thursday) that Gov. Scott attended the annual Special Olympics Law Enforcement Torch Run, during which law enforcement officials around the globe run to raise money for the Special Olympics.

It would have been an almost idyllic scene had it not come on the heels of Gov. Scott’s announcement that the state’s payments to social workers and group homes for people with disabilities would be slashed by 15 percent.

Rick_scott_torch_run_

On March 31st, Gov. Scott ordered drastic cuts that would impact funding that is much-needed by the approximately 30,000 Floridians with “severe developmental disabilities,” the Orlando Sentinel reported. 

They say “a chain is only as strong as its weakest link,” and so it is clear that Gov. Scott is abusing his power to the chagrin of our most vulnerable residents.

The fact that he chose to ingratiate himself with the Special Olympics athletes after betraying the community of Floridians with disabilities  speaks volumes about the governor’s character. It was indeed the equivalent of politicians who kiss babies and hold puppies in order to get a photo op only to drop them two seconds after the camera flash. His actions were not inadvertently ironic—they were deliberately dripping condescension.  It was the ultimate kiss of Judas for these hard-working athletes that make our community proud.

According to the Orlando Sentinel article, “the governor invoked his emergency powers to order the state Agency for Persons with Disabilities to immediately roll back payments to group homes and social workers by 15 percent- an amount providers say could put them out of business and threaten their clients’ safety.”

The governor alleges that the cuts, which went into effect today, are an attempt to address the APD’s “ongoing budget deficit – currently at $170 million.” But is cutting the services that keep people out of nursing homes and off the streets the best way to address this deficit? I think not.

My view is that the person occupying the office of the governor can best be judged by how he treats those who are the most vulnerable, the people who rely on the goodwill and kindness of others. Turning his back on them is nothing short of a crime.

And this isn’t the only example of Gov. Scott’s crusade to put his personal interests ahead of the well-being of his constituents. One has only to read about his pre-political background in this article on The Huffington Post to understand what’s in it for him.

Furthermore, Mr. Scott is pushing a bill that will initiate a complete overhaul of Medicaid, a program that provides healthcare coverage for people with low incomes or with certain disabilities and high medical expenses.

As if enough people didn’t already stand to be affected by this impending overhaul, no doubt the aging population of Baby Boomers, many of whom might be dependent on nursing home care, will find this to be a very costly decision.

What it all boils down to is the state government’s compassion (or lack thereof) for a sect of the population that is historically overlooked, marginalized, or sometimes institutionalized. These seemingly-innocent “cuts” will force many people who can otherwise live independently, but who rely on an aide or nurse, into private, expensive nursing homes.

But perhaps Mr. Scott’s biggest mistake is assuming that people with disabilities will passively accept his actions without rebuttal. Well, Mr. Governor, think again. You better start showing some compassion, or it won’t be long before the whole of Florida is declared a “state of emergency.”   

 

 

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This Week’s Rundown – Getting Back into the Game of Life

I think I long ago made it clear what type of person I am. I’m the kind of person who cannot be doing just one thing. If I do only one thing, it will not get done at all. I’d rather have ten things to keep me busy, and I can almost guarantee that they’ll be finished! Yeah I know– go figure.

This is where I’m happiest– that midpoint between “I’m happy and doing what I love” and “I’m ready to pull my hair out.”

Maybe it’s a general problem with staying motivated and focused on what I have to do. I have ADHD; I was diagnosed while in college while struggling with a class. I’ve heard a lot about ADHD among people with spina bifida, but I think it’s very rarely discussed in detail.  

But more about that in a future post, hopefully. If I get around to it, which is questionable.  

Here’s a quick list of some of the things I’ve been doing lately: 

 

  • Spending a LOT of time with a new group formed by my Church 

 

  • Organized the second outing for the young adults with Spina Bifida in my community 

 

 

  • Currently battling another UTI before it gets really bad (you know, “E.R. bad”)

 

Peanuts_gang

As you can see, much of my life is so typical of being a person with Spina Bifida. I am fighting to have a healthy social life, as well as have a healthy lifestyle in other areas. It’s tough. It’s hard work. It’s painful sometimes. But it’s worth all the effort when I accomplish something. 

During our outing with the young adults, the topic of depression came up at one point. I think my life is testimony to the healing power of having a social life, a solid, faith-based support system, and a devoted family. I honestly don’t know how I would live without any of these, now that I have them. Without them, issues like having a UTI would become a really big deal– the focus of my life. But fortunately, I’ve been very blessed now that it’s only a tiny fraction of my existence, and I can improve upon this. 

And I now know that, when I’m hanging out with friends in a lively environment (we went to Downtown Disney Marketplace in Orlando), it ceases to be a group of people with spina bifida, and it becomes simply a group of people challenging the struggles– and having a great time in the process. 

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Dear AirTran Airlines: I Have Spina Bifida, and I Am Healthy

Guest post by Sarah Mueller

 

And now, from the depths of the uncertainty that has been the Holdin’ Out for a Hero blogging schedule comes, indeed, an unprecedented announcement. While I’ve often toyed with the idea of featuring guest bloggers on this site, no one has stood out to me as a writer the way this first contributor has. I have known Sarah Mueller online for only a few short months, but already I can think of no better person to usher in this new era of Holdin’ Out. 

From now on, I’d like to periodically feature writers whose voices echo different aspects of life with spina bifida. I will not be limiting this to only people with spina bifida, as I firmly believe we are a “community” and not just a group of individuals. 

If anyone is interested in contributing to Holdin’ Out for a Hero, please E-mail me at laurita.tellado@gmail.com so that we can discuss some ground rules for posting. 


Sarah_mueller_headshot

 

Sarah Mueller, 24, lives in Wauwatosa, Wisconsin and has spina bifida. She holds a B.A. in Justice, focusing on advocacy, grassroots programs, criminal justice and pre-law, and a Certificate in Peacebuilding. She is now pursuing her M.S. in Thanatology. Sarah plans to focus her thesis on the “inherent ability of people with disabilities to persevere, adapt and grieve effectively.” In late 2012, she hopes to launch a disability-related company. 

 

My name is Sarah Mueller, age 24, hailing from Wauwatosa, Wisconsin.  I most recently chose to fly with you on round-trip, non-stop flights #215 and #212, March 10th & 16th,  2011 from Milwaukee, Wisconsin to Naples, Florida.  On this particular excursion I traveled alongside my mom; our combined tickets totaling approximately $756.00.  Though my flight from Milwaukee to Naples was uneventful, the return flight was quite the opposite, and I would like for you to know all about it. 

 Firstly, I would like to share that I have traveled via the air around fifty or so times in my short life, and have never once experienced an issue in purchasing exit-row seating on any airplane, with any airline—that is, until this most recent trip.  Not only was there an issue with being seated in the spots which had been purchased ahead of time, but the inner structure of this particular AirTran airbus was compromised.  To top it all off, several airline personnel were insensitive, prejudiced and downright ignorant… all issues/encounters which I find to be unacceptable, and marring to the reputation of AirTran Airlines. 

 It is important now to point out that I was born with a physical disability called Spina Bifida Myelomeningocele.  Its presence is obvious, but very seldom does it hinder living out my life as say a person without a disability might. It is unique to every person, but in my case is minimally cumbersome in travel, save wheelchair airport assistance which is provided to and through larger airports and TSA check points.  I do not regularly use a cane or wheelchair, and walk completely unassisted in most activities (this is not to say these should be defining qualities or matter exclusively, but it is my specific reality which I am explaining).  I live alone, drive without hand controls, attend graduate school, and engage in many common twenty-something activities.  Having Spina Bifida Myelomeningocele has never stopped me from living, let alone flying, nor has it ever previously precluded me from having a normal flying experience. 

That being said, an hour before I was to even board my home-bound flight from Naples to Milwaukee, I could tell something was different this time around.  AirTran personnel were incessantly eyeing me up at the gate—until I was finally approached by one that asked me where my final destination was.  Upon my reply, she looked confused, jotted down some notes, and simply walked away.  

Just as I am about to board the flight, my name is called by a Customer Service Agent for AirTran by the name of William Vincent, who seems bewildered by my seating arrangement on the airplane.  After verifying that I had indeed requested wheelchair service at Mitchell Airport in Milwaukee and paid for an exit seat, Mr. Vincent stated he would have to move me to another spot.  “Why?” I asked.  Said through condemning laughter, Mr. Vincent retorted: “Because, to sit in those seats you have to actually be healthy”.  At first I was caught off guard—confused, even.  However, the understanding and humiliation quickly set in. Keenly aware I was immensely disenchanted and bemused by his reply, gazing downward, he stated he would ‘do what he could’ to keep me in my pre-purchased seat, but that stewardesses would likely ‘make me move’.  

 And make me move they did. Though standard protocol was followed and I had been asked before lift-off if I were willing and able to assist in the event of an emergency (to which I had proudly replied “yes”), I quickly came to learn that believing in yourself and knowing your own abilities was simply not good enough for AirTran. It all of a sudden became my job to convince personnel, the FAA and your airline that I would most certainly be both capable of assisting and of value in the event of a crisis.  

Being so unexpectedly and repeatedly dehumanized, I failed in a second attempt to stand up for myself.  In what I considered a crushing blow to my ego, my mom and I were moved up one row to cramped seating which did little other than exacerbate chronic soreness in my joints—which is why we have always preferred spacious, exit seating to begin with.  The couple which had previously sat in our new seats had now been moved to our more expensive and comfortable spot, which they of course did not have to pay extra for as we had.  

Desperately trying to ignore the psychological injury I felt over the move request and actively attempting to hide my flushed cheeks, I began to get ‘comfortable’ in my new seat.  Right away I noticed I was now next to a dilapidated window which was partially dangling off the inner wall of the plane.  Charming.  Disgust rapidly returned full-steam, at which point I decided to snap a cell phone picture of the window, and began to look around for other anomalies near my new seat.  Without much effort, I found another: across from where we would have otherwise been sitting in the opposite exit row, sat a heavier family of three. The father in particular caused quite a scene.  For the duration of the flight he coughed, hacked, spit, drooled, and even dripped snot all over himself. 

This was the accepted picture of health which had surpassed me in seating accommodation rights?  My frustration and humiliation grew.  Though it is not my desire or intent to judge others as I have so unfairly been, I was undoubtedly bemused as to how this family’s health and collective ability had somehow appeared better, or more promising than my own.    

Many individuals with disabilities already have a deeply-embedded, shattered self-view—understandably so, given all the longstanding prejudice and misconception in Western culture.  But I knew I had been wronged.  I had been unfairly judged, perceived and consequently ‘dealt with’ by you, AirTran Airlines, and I was not about to let it go.  There have been far too many instances of disrespect brought about by airlines in recent years in relation to disability-related ignorance, and I was not about to be unfortunate incident # ___ .  A free ticket is not what I am after, nor will it appease me, quell or even assuage my dissatisfaction with your airline.  An apology would be appreciated—but change is what is truly expected.  Must we continually enforce sensitivity training, or can we simply begin to learn and understand that even in disability, there is great ability 

It is not my suggestion that every individual be evaluated with a fine tooth comb and given a physical examination upon purchasing a ticket for travel, but only that when a person states they can and will do something—believe them. If you will not judge the inherent ability of three heavier-set individuals, why must you question mine? Am I somehow less human than your other customers? Does the FAA negatively delineate individuals with disabilities in their guidelines and rules? If so, I’d like to be an agent of change. 

 AirTran Airlines, I have Spina Bifida…and I am healthy. Let me help you.

 

 

 


 

 

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This Week’s Rundown (Okay, not just this week’s)

Yes, I know. It’s kind of difficult to name a blog post “This Week’s Rundown” when it actually includes updates for the span of two weeks, and not just one. Duly noted. 

But, I’m constantly needing to adjust my internal settings due to my new “non-schedule.” The fact of the matter is, it’s anybody’s guess where I am or what I am doing on any given day. Whether it’s writing for Marquis or LATISM, or attending an event as an opportunity to promote Holdin’ Out for a Hero, it’s pretty unpredictable! That being said– I love it. 

Here’s a quick review of some of the things I’ve been up to since I last blogged here: 

  • I’ve been busy planning and organizing events for young adults with spina bifida in the Central Florida area! This is an exciting project that I’ve wanted to undertake for months, and I’m having fun getting started. My hope is that more people will get involved, and that we can really connect based on our shared experiences. 
  • There are a few letters that I’d like to send out soon. I’ll keep you posted when I send them, or if I receive replies!
  • There are also several different opportunities for which I think I could apply on behalf of Holdin’ Out for a Hero. I’m not going to discuss these in detail right now (I’m very superstitious!), but I can say that I hope and pray that God will allow some of these opportunities to come to pass for us. 
  • I’m signed up for several upcoming events as a volunteer. As always, I enjoy these opportunities to help out with other causes, but I also would welcome the chance to speak to others about Holdin’ Out and my mission for spina bifida awareness. 
  • I’m enjoying being part of the Board of Directors for the Spina Bifida Association of Central Florida. Also, I’m now Tweeting for them, and you can follow all our updates!

127_hours_10

And here’s just a random addendum. I’ve recently become obsessed with an incredible story I only learned about a few weeks ago. While watching the Academy Awards, I saw that actor James Franco was up for an Oscar (he didn’t win) for his remarkable portrayal of a real person. Aron Ralston is an avid hiker, climber and overall adventure-seeker who was trapped in a canyon for six days in Moab, Utah. His arm being crushed by a boulder that came loose when he descended the canyon, he eventually had to resort to amputating his own arm in order to free himself. Danny Boyle’s film “127 Hours” is the fairly accurate portrayal of what occurred during those lonely, desolate days. 

Sure, it has virtually nothing to do with spina bifida, but long before I began writing this blog, I was fascinated by bizarre stories of survival and human triumph in the face of extreme adversity, so I thought it share this. If you haven’t seen the “Dateline NBC” special on this story with Tom Brokaw, I highly recommend watching this before seeing the film. I’m definitely going to keep Aron Ralston in my mind whenever I feel tempted to complain about my circumstances. 

So that, in a nutshell, is what I’ve been up to– living life and searching for inspiration. I hope that your search for inspiration is successful, as well! 

 

–Love, 

Laura 

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