To Tanzania with Love | The Laurita Spina Bifida Project wants to donate wheelchairs

“How sad it is that we give up on people who are just like us.” — Fred Rogers (“Mr. Rogers”)

I don’t really remember what it’s like not being able to walk. As parental anecdotes recall, I was about two years old when I took my first steps. My parents were overjoyed, of course, but probably more than most parents, because I have spina bifida. According to my doctors at the time, I wasn’t supposed to be able to walk.

I may not remember what it was like crawling around the house or not being able to stand up, but, at age 30 now, I am beginning to grasp what it means to have limited mobility. My knees and back hurt constantly, and my wheelchair is getting much more mileage than it used to.

As I recently learned through a good friend I’ve never met, there are people in Tanzania, and in many other countries, who do not know the privilege of owning a wheelchair— what a blessing it is to have the equipment to facilitate mobility.

Little did I know until these past few weeks, that there are people on the other side of the world who would give anything to have the freedom I am often complaining about— the freedom to move.

That’s why my non-profit organization, The Laurita Spina Bifida Project, has offered to help the Association for Spina Bifida And Hydrocephalus Tanzania (ASBAHT) by raising funds so they can purchase wheelchairs, walkers, crutches, and a prosthetic leg for a young girl with spina bifida.

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Image courtesy Sifa Sylvia, ASBAHT 

A shifting perspective

It really gives me pause to reflect on how grateful I am for my “inconveniences.”

Over there, where my friend lives, people aren’t griping because someone took the accessible parking space. Or because their wheelchair won’t fit in their friend’s car when she offers to give me a ride.

They don’t complain about these problems because they don’t exist. Because access to the mobility devices they need doesn’t exist.

Many moms of children with spina bifida and hydrocephalus must push their children in strollers instead of carrying them. If they don’t have access to the brain surgery to have a shunt placed, the children’s heads grow until the parents can no longer carry them. Even these strollers are very hard to come by. As for me, I am only vaguely reminded I have a shunt in my head when the weather changes and I feel a slight headache.

This holiday season, I am fully committed to making the freedom of mobility a reality and not just a dream for at least several people in the Tanzanian spina bifida community…people who are much like me.

Maybe this will make a huge, life-altering difference for them. Maybe it won’t. All I know is, everyone needs someone in their life who refuses to give up on them.

I have you guys. Now, it’s my turn to be that person for somebody else.

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Image courtesy Sifa Sylvia, ASBAHT 

How you can help

What we need, first and foremost, is monetary donations. Whether it’s $5 or $500, every dollar makes a big impact when you add it all up. Trust me on this! How incredible is it that for the price of a latte macchiato you bring us one step closer to giving a deserving human being the gift of mobility?

 

Here’s a rough estimate of what each item costs, in U.S. dollars:

• Wheelchairs – $140.00 each

  • Walkers – $70.00 each

• A prosthetic leg for a youth with spina bifida – $460.00

Other ways to help out

If you own a company or know of a company or organization that might be interested in partnering with us to help raise the funds, please reach out to me at laurita.tellado@gmail.com. I truly believe “it takes a village,” and you are all my shining example of that!

Consider this campaign for your company’s end-of-year charitable contributions. Every donation is tax-deductible.

Also, since there are just so many wonderful social good campaigns during this time of the year, we need your help with getting the word out. Please, post to Facebook, Tweet, share, blog, Pin, Instagram post, etc.! There is truly no action that is too small to make a difference.

Please share / post using the hashtags #TheLSBProject , #SpinaBifida, and #Give5ToThrive (because we want to encourage that no amount is too small!).

Keep up with this campaign by following and connecting with us on social media:

The Laurita Spina Bifida Project on Facebook

@TheLSBProject on Twitter 

@TheLSBProject on Instagram

Remember what it’s all about

Finally, keep in your mind and heart that we are doing this to pay it forward. We have been so Blessed throughout this entire process, and I’m grateful for each and every person who has been part of The Laurita Spina Bifida Project’s journey thus far.

In the words of my friend Sifa of Tanzania, the angel behind-the-scenes who has put me in contact with the ASBAHT: “It will be an honor for ASBAHT to partner with you or any other organization or individuals out there with the heart to help the forgotten children, youth, and adults living with SBH in Tanzania.”

Thank you, Sifa. We’ll do our best.

Love,

Laurita ♥

The Laurita Spina Bifida Project to launch at Hispanicize 2016

Why, yes. It has indeed been a while.

Mea culpa. I may not have been fully “present” on Holdin’ Out for a Hero, but please rest assured…incredible things have been happening behind the scenes– miracles, actually!

Today, after 19 years of wishing, learning, waiting, and hoping, after years of prayers, all answered, not all in the way I anticipated, after much hard work and informal advocacy, it’s happening.

My non-profit organization, The Laurita Spina Bifida Project, is launching today during Hispanicize 2016– in Miami, no less.

Don’t pinch me, please. I don’t want to wake up!

It’s been a long time coming. I mean, really. I remember growing up thinking that starting any kind of organization– for-profit or non-profit– required wealth, and lots of it.

I remember wondering why I wasn’t rich and able to fulfill my dream.

I remember writing my first letter to Oprah Winfrey, and pouring my heart into it, asking her to shoot an episode about spina bifida. And I remember very clearly the polite “no, thank you” letter I received from The Oprah Winfrey Show– at age eleven.

Sometimes I wonder why I just didn’t give up and pursue a different path. I believe anyone with spina bifida can be just about anything within some reason. I could have done anything.

Instead, I chose the road less traveled. The one that hadn’t been trodden before– the one I had to pave myself.

But I haven’t walked it alone. Oh, no. There have been angels. Dozens, hundreds, perhaps thousands of them. And they carried me on their wings whenever I was too exhausted, too angry, too bitter from the failed efforts to keep flying.

It is now that I realize it. My “failures” weren’t failures at all– they were practice; my boot camp. With teachers, mentors, trainers, fellow advocates, cheerleaders, I worked through these failures and got up again.

My initial vision was to host a launch event at a restaurant in Orlando, close to where I live. Instead, I am in the heart of Downtown Miami, surrounded by fellow bloggers, journalists, entertainers, photographers, marketers, and seasoned non-profit industry veterans. Many of these are people I call very close friends.

In retrospect, I cannot imagine launching my precious childhood dream anywhere else, surrounded by so many of the people who are actually helping to make it happen!

Today, as I prepare to meet friends, family, and colleagues for Happy Hour at Toro Toro Miami and our extended community on Twitter at 5:00 p.m., I’m sure we’ll have a lot of last-minute details to think of.

As for me, I’ll also be reflecting on everyone, everything, every incredible moment that has brought me– us– here.

Today, I finally know it was all for good.

Please join us today on Twitter using the hashtags #TheLSBProject and #SpinaBifida (#EspinaBífida para español, también). Be sure to RSVP here to be eligible to win some awesome prizes!

And if you’d like to contribute to our crowdfunding campaign, that’s here.

To see the fabulous press release that my friends and colleagues at Hispanicize Wire published about our launch, please click here.

 

Till tonight! And…thank you. 

Love,

Laurita

Social Good at Hispanicize 2014: Be the Change

Hispanicize 2014 took place in Miami from April 1st through 4th, and this year, the organizers stepped it up by demonstrating that philanthropy is alive and well within the Latino community and beyond.

On March 31st, I attended Social Media for Social Good Training for Non-Profits Serving Latino & Multicultural Communities, a half-day, pre-conference event, sponsored by Florida Blue and open to professionals involved with nonprofit organizations.

 

Nonprofit_training

 

The presenters were Alex de Carvalho, founder of Social Media Club of South Florida, as well as Regional Development Director at Constant Contact; Katherine Doble, publisher of Los Tweens and Teens and president of Siren Marketing; and Maricela Cueva, vice president of VPE PR.

The topics covered ranged from strategies for E-mail marketing to the most effective platforms and methods for engaging potential cause supporters using social media.

I personally found the training interesting and engaging, and it was packed with lots of resources for nonprofits and individuals alike.

 

 Yoani_Latinovator

For this cause blogger, one of the most awesome moments of the conference was witnessing Cuban bloguera Yoani Sánchez receive a Latinovator award for her courage and relentlessness in informing the global public on what is going on in Cuba.

The writer and activist has been arrested several times, even beaten, for speaking up.

I was honored and privileged to have the opportunity to meet her last year, when she came to Orlando to speak at my alma mater, Valencia College. After she was interviewed at the Latinovator Luncheon, I got to attend the press conference and ask her a question! What an amazing opportunity. I was thrilled. :)

Yoani_y_yo

I couldn’t believe that Yoani Sánchez remembered me from the Valencia event! I imagine she meets hundreds of new people every week. 

Attending the Positive Impact Awards was yet another amazing opportunity to see social good up, close, and personal. It was also a wonderful time to pay tribute to many awesome Latinos who are making a huge difference in our communities– and in the world.

Manny_y_yo_PIA

I’m very proud to know Hispanicize Founder & CEO Manny Ruiz, and call him mi hermano. Congrats, Manny, on being given the key to the city of Miami!

By far, one of the most emotional moments during the Positive Impact Awards was seeing Hispanicize’s own Founder & CEO, Manny Ruiz, be surprised onstage by being presented with the key to the city of Miami by none other than the Mayor of the City of Miami, Tomás P. Regalado.

I actually had tears in my eyes, watching Manny choke up as he thanked everyone for their support. 😉

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Manny Ruiz gets emotional upon being awarded the key to the City of Miami. Love it!

Even early on in the evening, on the red carpet, I was able to say hello to a few familiar faces…including this one:

EdwardJamesOlmos_and_Me

Oh, you know, just hanging out with my friend Edward James Olmos! 

I was so thrilled that actor Edward James Olmos remembered me from last year, when I attended the premiere of “Filly Brown” during Hispanicize! Eeek!

But that wasn’t my only “geek-out” moment of the night. For reals. Yolanda Pagán, whose late husband Louis Pagán inspired the Positive Impact Awards, and I sort of improvised and tag-teamed that evening during the red carpet. It was a really sweet moment as I watched her glide gracefully from interview to interview and from photo op to photo op! Yoli and I have become very close friends ever since we met during Hispanicize last year, and I felt Blessed and honored to witness this shining moment for her.

Well, Yoli came over to me during the red carpet madness, and straight-up told me:

Maria Hinojosa wants to meet you.”

Jaw. Drops. On. Floor. 

“What!?” I gasped. 

“Maria Hinojosa,” Yoli repeated. “She wants to meet you.”

“Why?” I muttered breathlessly. 

“Are you seriously asking that question?” Yoli countered. 

Well…yes I am!  But, no matter. When veteran, award-winning journalist Maria Hinojosa asks to meet you, you ask when and where! 

So, I dashed over to where Maria Hinojosa was being photographed and fawned over. Then, she notices me.

Then, she addresses me.

She said she really wanted to meet me, and that I was an amazing blogger or something like that, but, truth be told, as is the cruel irony in most situations that you should have been taping– I remember very little of what was actually said because of how shocked I was. Understandably. 

But I do recall the million-dollar-moment, as I was basking in my 30 seconds of glory, Yoli watching me the entire time with a huge grin on her face. 

Manny walked over to us (to formally introduce me to Maria, I imagine) and puts his hand on my shoulder and says to Maria (I mean, are we on first-name-basis now!?):

“Laurita is one of the best bloggers in the country.” By this point, I’m fighting back the tears. 

And then Maria totally says, pointedly, to Manny: 

“I know! That’s why I wanted to meet her!” 

By then, whether I was still breathing was questionable. I think I had a pulse, though, because my heart was racing.

MariaHinojosa_y_yo

Maria and me. New besties? Here’s hoping! 😉 

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George Torres, founder of the Positive Impact Awards, Yolanda “Yoli” Pagán, wife of Louis Pagán, and Manny Ruiz pay tribute to Louis’ legacy. (Doesn’t she look stunning?)

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Some of the Positive Impact Awards honorees share their moment of triumph onstage. 

I fear I’ve already made this post too long, but I have to share about the panel I spoke on, on Friday! My dear friend and hermano, George Torres, a.k.a., “Urban Jíbaro,” asked me to speak on a panel titled “Hispanic Social Media for Social Good: Corporate Best Practices.”

SocialGoodPanel

(From left to right): Stephen Chávez, founder of Latino Foodie, moderated the #SocialGood panel, which featured George “Urban Jíbaro” Torres, founder of Sofrito Media Group, and Sofrifo for Your Soul, Steven Sánchez, Global Corporate Communications Manager for 3M, Sonia Díaz of Balsera Communications, and me. 

I have been fortunate to be a part of several dynamic panel discussions these past few years, and this one was no exception! Despite being the last day of the conference, and people showing up– *ahem*– at “Latino time” (there were parties every night!), I feel we had an amazing chemistry among our group, and we were able to engage with our audience members.

The best part was being able to tell my story, and hearing everyone else’s personal journeys through social good! I’ll be honest– I came away from this panel learning a lot! 

YoliYyo

With Yolanda “Yoli” Pagán, who is now one of BFFs! I can’t tell you how grateful I am for your support, encouragement, and many pep talks before and during Hispanicize! 😉


Girlfriends

With my longtime amiga, Alsy Acevedo of Catholic Relief Services, Anadel Alberti of Lanugo, and Yoli. Thanks so much, ladies, for supporting me and attending my panel! 😉

Later that day, after I recovered my nerves from speaking, I ran into Matt Wallaert, a behavioral scientist who works with Bing. He wanted to talk to me and introduce me to a group of young students with ASPIRA of Florida that he brought to Hispanicize, so that I could encourage them. Needless to say, I was at a total loss as to what to say to these kids! I have no idea how to foster and nurture young minds; I don’t know what you’re supposed to say to encourage them!

Well, when I saw Matt and a young friend of his, Chantal, they told me that they had attended my panel and that it was great! Matt had walked in with his group of students to watch/hear us! I was so incredibly moved by their show of support, and I realized that, when it comes to the next generation, all you have to really do is be there for them.

The week of Hispanicize was both too long and too fast. There were so many things I would have liked to do but didn’t have the time or energy to do. There’s just so much! That’s why I’m dedicating several posts, here, on Espresso con Leche, and on my hypeorlando blog, to covering everything I can.

By far, the most inspiring and uplifting moments of Hispanicize this year were the ones related to social good. Of course, it feels great to give, and it also feels wonderful to connect with others who are passionate about philanthropy within the social media space.

The best part of using social media for social good is that “the buck doesn’t stop here.” The donation or Tweet that you make, the photo you instagram, the blog post you publish about a cause can have so many impressions and can be shared so many times. Social media knows no boundaries or limits. Social media exists so that we can push our stories out beyond the natural, physical scope of older media channels.

And this week, I got to connect and reconnect with so many others who feel passionate about doing just that!

A hearty shout-out to the following sponsors:

  • Florida Blue, who sponsored the Social Media for Social Good Training for Non-profits Serving Latino and Multicultural Communities training
  • 3M, who sponsored the Positive Impact Awards, this year’s signature event, in addition to sponsoring and participating on our panel, Hispanic Social Media for Social Good: Corporate Best Practices.
  • Toyota Latino for being my sponsor during Hispanicize, and for inviting me to sit at their table during the Positive Impact Awards! I have so much more content to share about you guys, but for now I’ll say that you have truly demonstrated your commitment to social good in every initiative and program you design for consumers. Thanks for taking me under your wings! 😉

 

 

“You must be the change you wish to see in the world.” 

–Mahatma Gandhi

–Laurita ♥

The 2014 SoftRock Holiday Giving Gala #SRGiving

This past Saturday, I was invited by a new friend to attend the SoftRock Holiday Giving Gala at Tier Nightclub in Downtown Orlando! Samantha Weaver is senior writer for SoftRock, a media company that designs software and multimedia for businesses.

The premise of their Giving Gala was to invite guests– in exchange for a pledge to give time in volunteer hours for any charitable organization.

I love that concept. 

Indeed, for me, there is nothing better than encouraging employees to support a worthy cause, or even several!

So, when Samantha invited me to this event, I simply couldn’t resist. 😉

Mami was my plus-one at the gala, and we got the star treatment that night! We were picked up promptly by a car service and taken to Tier Nightclub, a trendy spot in Downtown Orlando.

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I was really impressed to see so many plush, comfy sofas in a club setting! I wasn’t expecting that.

 

SamanthaWeaver_and_meWith Samantha Weaver, Senior Writer for SoftRock

I enjoyed drinks and tasty appetizers with Mami, and did a lot of people-watching!


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Mami and me. :)
 

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Caught live-Tweeting and instagramming! 
 
 
It was great to run into several friends– some of them from way back! 
 
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With Lynn Hoppes, who now works with SoftRock, and who I met as Sports Editor when I was interning at Orlando Sentinel in college. 
 
 
JenAndMe
 
With my friend, Jen Vargas, of Central Florida Top 5
 
 
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With the ladies! Samantha, Jen, me, and Jeanette Scott of J’s Everyday Fashion
 
 
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With Alec Difrawi, Founder & CEO of SoftRock. 
 
 

I’m so glad I was invited out to the party, and even more excited to start the year off by taking a pledge to volunteer in my community!

Thanks, Samantha– and thanks SoftRock!

Laurita :)

 

Keeping Perspective: ‘Hero’ Spencer Day Twitter Chat a Success!

When you’re going through life, struggling to keep up with everything that’s going on with you, around you, it can be a real challenge sometimes to remember why you “do what you do.”
Three years and eight months ago, I had the opportunity to meet my new musical “idol,” contemporary jazz singer and songwriter, Spencer Day. I was simply overjoyed to meet him, and I honestly never thought much would happen after that.

 

DSC01390Spencer and me, enjoying a cup of coffee in NYC in August 2010. 

 

I couldn’t have been more wrong.

Since our initial encounter in Clearwater for a jazz festival, after which we talked at length and I briefed him on my campaign for raising awareness of spina bifida, we have remained connected. He knows I’m moving forward, deciding what the next step will be for this cause, and he wants to be there to support it, in any way he can.

Several months ago, the opportunity arose for me to be involved in helping his career, by collaborating with his fan club and promoting events, music, and Spencer’s latest projects on different social media channels.

Out of all the work I’ve done thus far in my life– including past jobs– few things have been as rewarding for me as the experience of being a part of Spencer’s Fan Club Social Media Team. We started as a motley crew, an assortment of people who clearly share a common interest– an enthusiasm for Spencer Day’s music.

About a month ago, a crazy, random idea popped into my head: Hey, guys, why don’t we host a Twitter party for Spencer? 

It seemed like a harebrained project to take on, considering I’m always on the go, and everyone is busy during the holidays. But we decided to do it.

Yesterday evening, I hosted, along with Spencer as our guest of honor, a Twitter chat with many of Spencer’s biggest fans, in addition to quite a few people who are new to Spencer’s music. The conversation was lively, informal, and very funny at times! Attendees were encouraged to ask Spencer anything– and they did, and he responded. 😉 

As I sipped on my coffee (in my pajamas!) while trying to keep up with the conversation thread, I marveled that such an awesome cyber event could be pulled off in such a short window of time. I also couldn’t help but feel gratitude toward all of the people who participated– even if only for a few minutes during their busy evening.

As a social media consultant, the number of “impressions” or “pageviews” matters. It’s a measurement of quantifiable success, and it’s the most “tangible” evidence of whether or not an online event was a success.

As a person, however, I realized that shouldn’t matter to me. 

What mattered is that everywhere I looked in my Twitter feed, I could see familiar “faces,” avatars and usernames of my friends, some bloggers, some non-bloggers, who showed up in support of me– and in support of Spencer. 

We also got to reward some of Spencer’s fans and followers! We gave away 5 copies of Spencer’s latest album, “The Mystery of You,” as well as 6 digital copies of Spencer’s holiday album, “If Christmas Doesn’t Kill Me.” It was so rewarding to make people happy by sharing his music!

The report I generated afterwards showed that, in the past week, the hashtag #SpencerDay has had over 1.8 million impressions.  That’s not bad at all, considering how many holiday/Christmas parties, family gatherings, business events, and other commitments everyone has going on during this season, that make it difficult to participate in online events.

 

SpencerDayTwitterResults

 

For a social media consultant, those 1.8 million impressions are the definition of success. 

For me, however, it’s those familiar faces, the “avatars” I know so well, that made me feel like a winner. 

I’m truly blessed to have so many people who genuinely support and “get” what I do. Even my parents, who years ago found the words “blog” and “Tweet” intimidating, pitched in by Tweeting and making sure I had a hot mug of coffee to help me stay alert. 😉

Yes, it’s true– there are people who might measure success in different ways– by monetary earnings, job promotions, or how many conference speaking gigs they landed in a year.

That’s all good and enticing. (Hey, who wouldn’t want all that?!)

But sitting at my laptop, Tweeting furiously and watching as the stream flowed constantly with new comments, questions, and retweets from people both familiar and unfamiliar, I couldn’t help but feel like the luckiest girl in the world. 

Thank you, from the bottom of my grateful heart, to all of you who joined, shared, Tweeted, promoted, and encouraged. Thanks to all of you who had the most awesome things to say about Spencer’s music, whether it was the first song you’d heard or if you’ve been a longtime listener. 

Thanks for being there anytime I’ve wondered if I could do something. Thanks for lifting me up.

 

Thanks, above all, for helping me to keep my perspective.

 

If you aren’t already following Spencer, please do so here:

 

Spencer Day on Twitter 

Spencer Day on Facebook 

Spencer Day Fan Club on Twitter 

Spencer Day Fan Club on Facebook

 

 

Love,

Laurita ♥

5 Simple Ways to Help Someone Living with Spina Bifida / #GivingTuesday

 

Giving Tuesday

 

 

Today is Giving Tuesday, a movement for social good that is taking social media outlets by storm. 

Thousands and thousands of people are sharing ways in which we can all give back to great causes. 

I don’t wish to add to the cacophony of causes by asking you to donate to this or that. Instead, I want to give all of you — even those with limited funds some tips on how you can support a friend or loved one who has spina bifida, or who lives with someone who has spina bifida (caregivers need support, too!) 

So, read on for some musts and must-nots.

 

1. Don’t exclude us from social gatherings. 

I remember how painful it was growing up, and the teen years were just as awkward as my early years. It hurt me deeply when I found out some of my girlfriends were hanging out and choosing not to invite me. The reason? They thought I might bring my mom along. Although it wasn’t true at all, it still hurt. My so-called friends didn’t think I was independent enough to attend a social function on my own, without my parents at my side.

If you have a friend with spina bifida, ask them what hobbies or activities they enjoy. Invite him or her to your next outing. If you have any doubts as to what their capabilities or limitations are, ask, but never assume. 

 

 

2. Ask us for help or advice when you need it. 

Believe me. This can actually be one of the greatest gifts you will give someone with spina bifida. Many of us with spina bifida are so tired of being “helped” all the time, and many times people won’t approach us to ask a simple favor out of fear that we won’t be able to help, or we’re too “burdened” by our lives. That, if you ask me, is an even greater burden.

So, go ahead and ask! The worst possible thing we could say to you is “no.” 😉

You might even find that we have a lot to offer and give to others. 

 

 

3. Don’t tell us about every medical study you’ve read about pertaining to spina bifida! 

No, seriously. We don’t want to hear it. Especially if it involves the prevention of spina bifida, medical research is based on a lot of different variables, and while your intentions may be noble, mentioning something like this can sound like you’re trying to “fix us.” Most people with spina bifida go through countless surgeries and hospitalizations, and often have different therapies to learn to maximize their potential, physically. Many times, if there is a procedure we can benefit from, chances are it’s already making the rounds in online support forums for families with spina bifida!

 

 

4. Don’t tell us God will heal us, or that there’s a reason we have spina bifida. 

I’m a deeply religious and spiritual person, and I have my firm beliefs. I personally do believe things happen for a reason, but if you’re saying this to me after I tell you about spina bifida, you’ll come off like a total jerk. Does that mean God chose for me to deal with spina bifida? Maybe. Then again, there are a lot of great things in my life that have come from having spina bifida, and also, a lot of great things that don’t have absolutely anything to do with that.

Still, never put us on pedestals because of having spina bifida. That’s just…creepy. 

 

 

5. We’re not sheltered. You can talk to us about…anything. 

I don’t know where this crazy misconception was born that people with spina bifida aren’t exposed to certain things– like sex, alcohol, rock n’ roll, the rise and fall of Communism, and Miley’s infamous twerkfest. 

We’re human. We read the tabloids from time to time, usually in the bathroom, just like you do. 

And we also like to party. Hey, you can’t expect us to sit around and watch C-SPAN all day, right? (Fun as it sounds.) 

What’s more, many of us have graduated high school, or even college or grad school. We like to talk. And I love Google and Wikipedia! So, even if I don’t understand what you’re talking about, give me about 30 seconds with my phone to impress you. 😉

Oh, and we also have brag-worthy lives filled with riches and diamonds and yachts and filthy-rich-jetsetting, so make sure not to hog the entire conversation. 😉

 

 

Hopefully that sheds a little light on some basic things you can do to keep someone with spina bifida in your life. (Yes, we grow tired of being overlooked, just like you would!) The most important thing to remember is that our lives don’t revolve around having spina bifida. There are so many facets of our lives, and many of them are similar to yours. 

Also, like you, we hate twerking.

Happy Giving Tuesday!  

–Laurita ♥

It Takes a Village

That is, without a doubt, one of my favorite, perhaps overused, sayings. But, I’m a firm believer in its veracity.

I don’t think anyone was put on this Earth to “go it alone,” at least not entirely. If you reach out far enough, there is always someone there.

There has always been someone there for me– many people, in fact. 

For several years, one of those people has been Tracy Jensen. The mother of five beautiful boys, her youngest, Kumaka, has spina bifida. She and I connected on Facebook a long time ago, and since then, her stories about Kumaka’s strength, resilience and overall sense of adventure and humor have encouraged me during difficult times.

Through all of their challenges, Tracy has remained an exceptional mother, as well as a great encouragement to many families in the spina bifida community.

Many parents might raise an eyebrow and think, sympathetically, (and frankly, a little condescendingly), “I don’t know how Tracy does it.” And I’d be lying if I told you the thought hasn’t crossed my own mind more than once. What is most amazing about Tracy and her family is that they always take the time to support their community and involve their kids in great things. Kumaka is currently following in the tire tracks of the notorious Aaron Fotheringham, a WCMX (extreme sports for wheelchair users) pioneer and truly, the resident badass of the spina bifida community. 

While living on the west coast, Tracy and Kumaka also support and encourage Misty Díaz, a runner who has spina bifida and is raising funds to help kids and youth with disabilities compete in sporting events.

So you see, this is a very mutually nurturing community, and our paths often overlap. Now Tracy, the woman who does so much for all our community, needs our help. 

She has reached out– this time, across the globe– and fallen in love with a little girl named Sofi.

Sofi is four years old, lives in Eastern Europe, and she has spina bifida.

During the first two years of her life, Sofi was only bottle-fed and was rarely let out of her crib. As a result, her physical impairments are severe, as she has been deprived of achieving several critical milestones.

 

Sofi Rose

Still, her sunny disposition are encouraging signs that she will continue to improve, and she now lives in another orphanage, where she is thriving.

But, she needs a family, and a permanent, loving, safe home. And so, Tracy and her family are heeding this little girl’s call for help. They’ve decided to adopt Sofi, and bring her home to the U.S., where they will take excellent care of her, as they have for Kumaka and Sofi’s four other big brothers.

Since August 2012, the Jensen family has been tirelessly raising funds to offset all of the costs associated with Sofi’s adoption– the court fees, travel documents, airfare, hotel stays…the list goes on and on. Indeed, the expenses are astronomical.

The moment that they get to carry Sofi into their home will be priceless. You can’t quantify the value of a family’s love

This isn’t the first time I’ve shared my thoughts and heartache over orphaned children overseas who are living with spina bifida. All of the challenges that children face in an orphanage environment are multiplied many times over by the severity of the child’s condition.

In Sofi’s case, we know the sky will be the limit for her– once she comes home. 

In a classic race-against-time, the Jensens have been presented with the possibility of having her home with them for Christmas, but they can’t do this without our support. 

Please take a moment to visit Tracy’s donation site for Sofi and commit to giving $5, $10, $20, $25– any amount will help, and it all adds up. 

If you can afford that latte (ironic, since I’m typing this at my local Starbucks!), you can afford to help bring Sofi home. 

In Tracy’s own words, “We may be on this journey to adoption because we feel led to bring Sofi home, but you all are on our journey too…you are all part of the steps to bring our girl home.”

I feel privilege to be part of the “village” that wants to help bring Sofi home. From the orphanages of Eastern Europe, to the creature comforts of her new West Coast home, it’ll be quite the journey for little Sofi, but luckily, she has all of us to guide her steps along the way.

 

Tracy_and_sofi

It may take a village to raise a child, but it’ll take an even bigger village… to bring her home for good. 

–Love,

Laurita ♥

Health, Special Needs & Social Change at LATISM ’13: #InspireCare

Disclosure: Johnson & Johnson was one of the fabulous sponsors of the LATISM ’13 conference. I was not compensated for writing this post. All views and opinions are my own. 

 

Even though, lately, it seems I’m busier than ever, I’m still gradually processing everything I learned and experienced at LATISM ’13 last month. Indeed, I feel LATISM ’13 was a huge catalyst for all of the positive changes I’m seeing in my life right now. I’m also learning to let go of some things, because if I don’t let go, I can’t embrace the amazing things that are heading my way! 

 

LATISM special needs panel

(From left to right):  Lisa Quiñones-Fontánez, Eliana Tardío, me, Christina McGeough, and Eileen Carter-Campos during the Beyond Chronic Illness & Special Needs: Life Beyond Your Diagnosis panel. 

 

One of the greatest opportunities I had at the conference was re-connecting with Johnson & Johnson, which has remained a faithful sponsor of LATISM for as long as I’ve been involved with the organization, at least. This year, there was a big focus on the health track of the conference, and Johnson & Johnson encouraged us to share our own, personal stories on Twitter using the hashtag #InspireCare. 

 

 

Ana_Flores_and_meBeing interviewed in the Johnson & Johnson Suite by the fabulous Ana Flores. Love her!

 

 

During LATISM ’13, Johnson & Johnson kept posing this question to attendees: What inspires you to care?

I think you’ve all known me for quite some time now to know at least a partial answer to this question, but I will still share with you all how I respond to this query. Below is my interview in the Johnson & Johnson Suite at the Waldorf-Astoria, with the lovely Ana Flores of Latina Bloggers Connect. Thanks so much, amiga, for interviewing me!

 

 

On the last day of the conference, I was given yet another opportunity to share what inspires me to care– this time, by speaking on the panel, “Beyond Chronic Illness & Special Needs: Life Beyond Your Diagnosis.”

This informal (no slides!), yet engaging discussion was moderated by Eileen Carter-Campos of Mamiverse and Mommy Teaches, and my fellow panelists were Eliana Tardío of ElianaTardio.com, Lisa Quiñones-Fontánez of AutismWonderland.com, and Christina McGeough of the American Diabetes Association

I’ve spoken on several panels over the past few years, and even moderated one in April at Hispanicize. It’s always fun, energizing, and insightful. But I never could have anticipated just how emotionally-charged it would be. 

During our Q&A session, one mom of a young man with ADHD spoke up, and shared her story. We were all so grateful to her for participating!

Then, the unimaginable happened. After our session wrapped up, and we were exchanging business cards with session attendees, I was approached by a medical doctor and a group of her medical students– all female, nearly all Latinas. They were incredibly interested in my efforts to raise awareness of spina bifida, and I seized the opportunity to share specific statistics and facts with them, as well as compelling stories I’ve been told. 

Some lingered even longer to chat with me, and I’ll never forget the student who asked me ever-so-humbly for advice. She has a sister with severe disabilities, and wanted my opinion on how to interact with her patients without coming off as “overprotective.” I assured her that her personal experience with her little sister was an asset, not a weakness. There are so many doctors who do a fabulous job of identifying with their patients, but very few can empathize like she can. I would tell her, right now, that the very fact that she chose to approach me and wanted that “patient’s perspective” shows that she is far more capable of connecting with her future patients than she gives herself credit for. I hope I connect with her again. :) 

Whenever I share about spina bifida at an event, or even informally, one-on-one with someone else, I think of the moms. I think of all of you who have written to me with your worries, fears, concerns, anger, hope, pride, guilt, triumphs. Indeed, while I will only ever see spina bifida from a first-person perspective, you’ve all challenged me to see things from the mother’s perspective, which is often one of uncertainty.

You’ve inspired me to care. 

 

 

Med_students_at_panel

My fellow panel ladies and I, posing with our new amigas– these are our future healthcare providers!

 

 

So, ladies– all the “special needs mamas” out there– this one’s for you. Thanks for the continued inspiration. And also– to the doctors, nurses, therapists, and health care providers who help reassure moms and dads when the most important thing— the health of their child– is out of their hands.

 

 

Love,

 

Laurita ♥

 

Top 5 Moments & Lessons at Top Blogueras Retreat 2013: UNited & UNdefeated

 

Laurita's Lumia_20130918_055

Above photo courtesy of Myrna Calderón.

 

 

I’m not going to lie to you. (You should know that by now!) The past few weeks for me have involved stress, tears, joy, excitement, more tears, and fears of developing a hernia. That’s usually what happens when I get sandwiched between conferences.

But I did it. I managed to attend the LATISM ’13 conference exactly a week after experiencing my first Hispana Leadership Summit in Orlando– and I also was honored to be invited to attend the second annual LATISM Top Blogueras Retreat in-between!

When it comes to attending conferences, my philosophy has evolved over time. I used to engage in the practice of grabbing an agenda first-thing, then circling and highlighting all of the sessions I wanted to attend.

I have long since abandoned that practice, because the idea of planning ahead for anything just seems ludicrous to me now. There’s the plan, and then there’s reality. 

The reality, I’ve learned, is the far better plan! 

Such was the recurring theme of my five nights in New York City. So, without further ado, I’m sharing some experiences and lessons I acquired during the first part of my adventure, The Top Blogueras Retreat and visit to the United Nations.

 

 

1. Eating out in New York with 100 of your hermanas is, in fact, material for a sit-com. 

During our first night together after all the Top Blogueras arrived, we headed over to Havana Central in Times Square– I think. Because I don’t think any of us knew for sure where we were going, LOL! We had to take taxis in very small groups, obviously, so when I got to the restaurant, I thought, “this isn’t too crowded. Maybe not everyone is here.”

About a half-hour later, our posse was still arriving– in droves. We took over the entire back section of the restaurant. It was awesome. 

Everyone is cramped at these long tables, everyone is talking at once, and it’s doubtful that any of us were actually listening to each other. We were just way too excited to all be together, and in one of Manhattan’s hottest restaurants, no less! 

That night, in my mind, was the perfect way to herald our arrival in New York City– Cuban food, drinks, girlfriends, and chatter. I wouldn’t have had it any other way.

 

 

2. Whether you attend the official conference sessions or not, you will get advice, you will get schooled, and you will get “tough love.” 

I barely had time, between stopping in the hallways to chat and catch up with amigas, to attend every session during the retreat. But, no worries! This event is all about Latina empowerment– and all about putting yourself and your needs first. For me, I needed those one-on-one chats, where the person I need to speak with has my full attention, and I can ask questions and we’re engaging each other. 

I got some sound, personalized advice from a financial guru right out in the hall (thanks, Francesca, for pulling me aside for that invaluable opportunity!), and he turned out to be an amazing man who is, himself, using his social power to effect positive change in the world. I’ll never forget my conversation with him.

During the retreat, one of my fellow health blogueras, Laura Termini, pulled me aside (that happened to me a lot last week!) and gave me some hard advice that I really needed to hear. She encouraged me to seize my potential and truly put it to use for the good of my mission. I can never thank her enough for lighting a fire under my feet! 😉

 

 

3. The United Nations is a global force for good that we all should be connecting and engaging with. They are awesome. 

When I heard we were getting an exclusive tour of the United Nations headquarters, I thought for sure it would be a stuffy, uninspired building with official seals stamped everywhere.

I could never have imagined it would be so beautiful, like visiting a museum or art gallery. The works of art that adorn these halls and majestic meeting rooms are an amazing testimony to the multicultural, multi-national mission that the U.N. promotes. Many works– ranging from paintings to murals, from tapestries to sculptures– have been donated by member nations. 

During an increasingly-hostile political climate in the U.S., which is seeing escalating vitriol towards people of different ethnic and cultural backgrounds, it was so reassuring to see firsthand how the U.N. embraces and promotes diversity, even in its décor.

 

4. International organizations, including the U.N., not only need to hear from us– they want to hear from us! 

During our briefing with officials that work with the U.N. at the Ford Foundation headquarters, we listened to speakers discuss the diverse issues that the U.N. is particularly concerned about– access to food, water, health care for all; education; sustainability, etc.

They repeatedly encouraged us to Tweet the U.N., especially during this week, which is the Social Good Summit and the U.N. is convening in New York City. The hashtag is #2030NOW, and the U.N. wants to motivate users to Tweet what they’d like to see happen by the year 2030.

I’m using my voice and my platform to make the public aware of how many Ob-Gyns are pressuring expectant parents of child with spina bifida or another condition, to abortThis is WRONG. When a parent makes an informed decision based on the perceived best interest of his/her family, that is one thing; but when a medical doctor entrusted with the care of mother and baby is insensitive to the vulnerable position that family is in, that is pure, unadulterated manipulation. Parents have the right to get impartial, objective but compassionate information from their health care providers about spina bifida, and all of their options. 

The fact that many medical doctors (Ob-Gyns, specifically, who will only deliver a baby and not go on to “treat” him/her) still push an aggressive agenda of eugenic abortion is a tragedy. It’s a tragedy, not from a pro-life or pro-choice perspective, but rather because the family is being deprived of knowing what’s possible for this child. 

So, if you agree that doctors coercing a family to abort is wrong, please join me in Tweeting and using the hashtag #2030Now to try to bring an end to eugenic abortions (in the U.S., too!) 

 

5. When you’re with familia, it doesn’t matter what you’re doing! You’ll have fun doing it. 

The Top Blogueras and the LATISM Sports Tennis Team were invited to the Billie Jean King USTA National Tennis Center (home of the U.S. Open!) to meet and play with a group of kids with Big Brothers, Big Sisters. Unfortunately, due to several buses breaking down, the children weren’t able to meet with us. :(

We were devastated that we all missed out on the opportunity to get together for some fun, but we did have some undisputed fun on the train ride over to the tennis center! 😉

Check out this short instagram video to see what I mean.

 

 

 

Well, that’s all for now in this edition of Holdin’ Out for a Hero. Please stay tuned as I’ll be working on another recap on the conference itself! Thanks a million, LATISM, for believing in me and choosing me to be among so many ladies that I admire and respect!

Hugs,

 

Laurita ♥

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


nbc-logo

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.