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 ♥

Turning My Most Painful Memory Into Triumph

mmvs_fb_1A

“Yes, the past can hurt, but the way I see it, you either run from it, or learn from it.”
—Rafiki, “The Lion King”

School should have been one of the happiest periods of my life. Instead, it was the source of my deepest pain—even now as an adult. I remember the taunts and jeers in the cafeteria. ”Cripple!” “Retard!” I remember trying to keep up with the others in P.E.

“Run, Forrest, run!”

In high school, I was accepted into the theatre magnet program at my school, a big deal for me. I was passionate about acting. For a while, I was part of a group of kids who were different—creative, outgoing, often misunderstood. We all got along. My ever-doting parents always welcomed all my classmates at my birthday parties. In fact, I became “known” for my house parties.

But by the time I was planning my Sweet 16 party my social life had taken a drastic downturn. I made a list of all the upperclassmen in the hopes that, by inviting them to my party, they’d accept me. A week later, no one would look me in the eye or talk to me.

I was devastated.

To read more, click here.

I’ll Show You My Reasons

 

Author’s Note: This post was written in October 2013. Over a year later, I still feel this way. Thank God Nicholas made a full recovery from his injuries described below. But his and my family– as well as so many other families– continue to wait for hope. We wait for awareness. 

 

cropped-Nicholas_and_me_cover.jpg

October is Spina Bifida Awareness Month. We’ve just made it past the half-way mark, and already I’m feeling like a broken record. 

I’m angry. I’m sad. I’m frustrated. I feel helpless. And all because it’s October. 

October is Spina Bifida Awareness Month. 

It’s also Everything Else Month. 

I’m not angry at the other causes– breast cancer, down syndrome, domestic violence– how could I be? They are valid, serious causes, every bit as worthy and deserving as spina bifida of being recognized and honored and supported, not just in October, but every month. 

I’m angry because the excuse that many people give to not support the Spina Bifida Cause is because they are busy supporting these other causes. 

I’m angry because they don’t get it

I’m angry because they believe spina bifida is less serious. Less worthy. Less important. 

On Monday, I visited Nicholas in the hospital. Nicholas is an eight-year-old boy with spina bifida and hydrocephalus. 

Last week, he was the victim of an unexpected, traumatic and heartbreaking incident when he was attacked in a park. While I won’t go into the details here, because it’s a situation that has caused his family– and all of their friends and loved ones– so much pain, suffice it to say he suffered two concussions and began having frequent seizures. 

These seizures could be enough to cause him irreversible brain damage. He already has developmental and speech delays because of the many neurosurgeries he’s had. 

How is Nicholas doing now? Thank God, he’s out of the hospital, as of last night. I’ve been in frequent contact with his mom, Cheryl, who is my very dear friend and who slept at his side every night in the hospital. According to her, his seizures are now under control, but only time will tell if he will get back all of his cognitive functions.

He’s not himself right now, she told me. Indeed, when I went to see him on Monday, the usually cheerful, calm eight-year-old was impatient– he even walked right out of the hospital room at one point, determined to visit the playroom. When he didn’t get his way, he growled and screamed unintelligibly, clearly frustrated.

Cheryl noted that he never behaves this way. She misses her sweet little Angel. 

There was one moment that stood out in a positive way for all of us, when a young hospital volunteer stopped by to perform magic tricks.

Nicholas lit up. His mother, and all of us that were in the room with them, watched in amazement as Nicholas even verbalized what he was feeling. He wanted to know “how he did that” when he demonstrated a trick. He walked right over to the young man and did not take his eyes off him the entire time. 

Watching him was, indeed, magic. 

Of course, many causes will demand your attention– this month, and every month. All of these are important, and we should take the time to learn as much as we can to help those we love– and ourselves– prevent illnesses and other devastating circumstances.

But, to a child living with spina bifida– and to the family that cares for him or her– often, there is no frame of reference outside of spina bifida. Sometimes, there is no escaping the uncertainty and pain that comes from knowing that someone you love is suffering. 

There are plenty of moments, like the one we witnessed with Nicholas, when you get a glimpse of hope, of recovery, of that return to the simple joys of childhood as it should be.

DSC02970

Happier times. Celebrating my birthday 2 years ago with Nicholas and his family– dad Jerran, mom Cheryl, and big brother Daniel.

But spina bifida complicates things. They can turn even the most common illnesses and injuries into a nightmare. Sometimes, we lose hope. 

During those moments, we try to choose to hold on to the moments we’ve enjoyed– the moments that make us laugh out loud, even through tears. The trivial moments. Sometimes one trivial moment can matter more than 1,000 serious moments.

But, my anger remains unassuaged. People still dare to question why this matters to me. 

I can only think of one good reason: 

Because I’ve been there, too. 

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Just days after I was born. The battle to survive and thrive with spina bifida begins almost immediately after birth for most of us.

 

BlogHer was very gracious in allowing me to share my story with their many followers! Please read, comment, share my post, and let BlogHer know that we need more stories about spina bifida awareness. 

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. 

 

 

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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 ♥

The Best Family Heirlooms: ALLERGYFACE™

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

 

allergy-face

 

 

Let’s face it. Perhaps one of the worst things that can happen to our daily beauty routine is allergies. They give us runny, red noses, puffy, watery eyes and face, and general low self-esteem.

But many of these allergy annoyances are no match for anyone with a good makeup kit! Blogger Carmen Ordoñez of Viva Fashion has a personal motto: “You can look great without breaking the bank.” 

And this applies to all of us who occasionally suffer from ALLERGYFACE™.

I come from a long, proud line of allergy sufferers. My allergy lineage can be traced back three generations!

My Abuelita has always been prone to severe allergies– of every kind. Even a simple activity such as going out in the yard to garden, which she loves, could trigger a reaction that would render her looking like a cooked lobster.

My Mami and I are also sensitive to the sun, though not quite as badly as poor Abuelita. This is why Mami always recommends using sunblock before going out and catching some rays.

Other products my Mami and I both can’t live without are makeup for sensitive skin (concealer, foundation, blush, eyeshadow, etc.)

Also, it’s important to remember to remove makeup completely before going to bed. Even the slightest bit of eyeshadow or eyeliner residue can be enough to trigger itchy, watery, red eyes.

Carmen Ordoñez also features some more great tips for combating ALLERGYFACE™ in her second YouTube installment, “Generations of Beauty Advice.” (Watch it here!) 

Also, while beauty tips are fabulous, it’s critical not to forget about the health aspect of this.  If you know you are prone to allergies, you should do everything you can to prevent the onset of an episode. Just in case, it wouldn’t hurt to carry antihistamine. (I even carry an epinephrine injection in my purse! It’s better to be safe than sorry.)


Some beauty tips can be more valuable than the most expensive heirlooms. What advice has been passed down in your family that can help fight ALLERGYFACE™? 

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. 
 
 

“Your Determination Inspires Me” and Other Killer Statements

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

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

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

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

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

I rest my case.

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

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

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

 

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

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

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

 

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

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

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

 

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

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

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

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

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

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

 

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

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

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

 

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

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

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

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

 

♥ Laurita