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 muchfor 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.
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.
It may take a village to raise a child, but it’ll take an even bigger village… to bring her home for good.
“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.
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.
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 allbecause 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, butevery 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 tellif 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.
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 stilldare to questionwhythis matters to me.
I can only think of one good reason:
Because I’ve been there, too.
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 sharemy storywith their many followers! Please read, comment, share my post, and let BlogHer know that we need more stories about spina bifida awareness.
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 catalystfor 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!
(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 bigfocus on the health track of the conference, and Johnson & Johnson encouraged us to share our own, personal stories on Twitter using the hashtag #InspireCare.
Being 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.”
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-chargedit 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 canempathizelike 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’veallchallenged me to see things from the mother’s perspective, which is often one of uncertainty.
You’ve inspiredme to care.
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.
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 excitedto 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 yourselfand 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 lotlast 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 allshould 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 abort. This 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 possiblefor 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!
This post is part of a sponsored campaign on behalf of Latina Bloggers Connect and the makers of ZYRTEC®.
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™?
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 work, a 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.
Recently, I’ve seen a lotof 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 ideahow many times I’ve given up or wanted to give up something, for reasons not having absolutely anythingto 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 problemwith 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!
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.
This post is part of a sponsored campaign on behalf of Latina Bloggers Connect and the makers of ZYRTEC®.
People say you can’t escape your heredity, your genetic fate.
Years ago, my parents told me the story of a conversation they had while they were still dating. Both Mami and Papi were prone to severe allergies, and their relationship was already heading towards marriage.
“You know,” said Papi, “When we have a child, he or she is going to be extremely allergic.”
“That’s true,” Mami said, in response to his observation. “Pobrecito.”
Ever since I can remember, I’ve been plagued by my genes– both a product and a victim of a genetic predisposition to allergies. Both my parents are prone to both seasonal– and year-round– allergies, as is my grandmother. Indeed, noses “run” in our family!
When I was about five years old, I was tested to find out just how prone I might be to developing allergies. While I don’t know all the specifics, I remember my parents telling me that a score of 100 was considered “normal,” and anything above 100 wasn’t.
I scored above 800. Holy moly.Indeed, my heredity had totally betrayed me.
While there is little I can do to prevent being allergic to certain things– like shellfish, or the pollen of many different trees– there’s a lot I can do to prevent allergies interfering with my life. Almost every day, especially during the spring allergy season, I take an antihistamine like Zyrtec to help alleviate some of the symptoms like sneezing and itchy, watery eyes.
But when it comes to disguising those annoying symptoms, I hardly know what to do. This is why I’m so excited to participate in Zyrtec’s ALLERGYFACE™ campaign, which has taught me a few tricks of the make-up trade to help conceal when allergies are getting the best of me.
A few musts for me on an allergy-prone day are: using eyedrops, avoiding any strong perfumes, and avoiding the use of eyeliner, as it tends to bother me when my eyes get itchy.
Fortunately, Zyrtec has partnered with beauty and fashion expert Carmen Ordoñez of Viva Fashion blog to bring us all some great tips for disguising that dreaded ALLERGYFACE™. This will be a three-part series on YouTube.com/Zyrtec featuring the best tips for disguising your allergy symptoms.
Watch the video below as she takes us through some ideas to hide puffy face, watery eyes, and a red nose.
Stay tuned for the release of parts two and three of Carmen’s video series, to be distributed in the summer and fall, respectively.
A big thanks to Zyrtec and Carmen Ordoñez (@VivaFashion) for giving us the tools and know-how to put our best face forward– even when we’re not feeling our best! Take that, ALLERGYFACE™!
At least that’s one victory for me in the battle against my genes!
What’s your story about how allergies have affected your life? Do you have any tips for combating ALLERGYFACE™? Don’t forget to Tweet using the #ALLERGYFACEand #ZYRTEC hashtags on Twitter, and “like” ZYRTEC on Facebook to join the conversation.
Whenever I return from a conference, I suffer from Chronic Recap Deficit Syndrome (CRDS). Yep. That’s in addition to spina bifida!
What is CRDS? It is usually characterized by one or more of the following symptoms:
(1) Panic or anxiety when logging into my blog dashboard
(2) Feelings of inadequacy when reading other bloggers’ recap posts
(3) Frustration (maybe even cursing) while uploading photos
(4) General unease or distress at not being able to summarize events adequately
I’ll admit– here and now– that I live with CRDS. And while there is certainly no cure,I’ve come up with a way to make my life (and yours as the reader) easier: make a list. So, without further ado, here’s my list of the Top 12 Hispanicize 2013 Moments (in no particular order of preference)!
1. The Sherwin-Williams #SWpintura Downtown Miami Design District Tour
At the Grand Opening of a new Sherwin-Williams store in Miami! #SWpintura
Yes, I know I recapped this already, but I can’t help but mention again how awesome this tour of Miami was. We got to see the part of Miami most people don’t think of when they think of this beautifully diverse, energetic city. So at the risk of sounding repetitive– it rocked.
2. Dinner with #ToyotaLatino representatives, bloggers, and communicators in the automotive industry Javier Moreno has been a great friend since 2011. I was absolutely thrilled when he put his faith in me and asked me to be the official correspondent at Hispanicize for Toyota Latino!
To me, it was just an incredible honor to be invited to be a correspondent, so I hardly imagined what Toyota had waiting for me– a multi-course dinner at OLA Miami, one of the trendiest spots in Miami Beach! The restaurant is located inside Sanctuary Hotel, and in it, you can enjoy the Latin American flavors created by renowned Chef Horacio Rivadero.
Oh là là!
Clockwise from top left: Marlin tacos made a very tasty appetizer; Toyota pulled out all the stops by presenting us each with a goody bag; we also get to each take home a coaster; the Chocolate Cigar, very popular at OLA, was the perfect ending to a delicious, sophisticated meal; dinner kicked off with an assortment of tantalizing and upscale Latin appetizers.
Goodies!! Ah, yes, please note: the scarf I’m wearing is part of my “welcome gift” from Toyota Latino! #Spoiled
My very dear friend, Javier Moreno, Assistant Manager of Corporate Communications at Toyota Motor North America, Inc. He’s the one who made this experience possible for me! Thank you sooo much! I owe you a few.
The very first Latina blogger I ever met– and to this day, one of my absolute favorites! Jeannette Kaplun is a beloved friend and “big sister.”
Besides, the amazing food, drinks, and atmosphere at OLA, my favorite aspect of the evening was being able to engage in candid, casual, unscripted conversation with people I normally would not dine with!
I was completely taken by surprise when I found out I’d be sitting next to Jorge Bernal, Entertainment Anchor on “Al Rojo Vivo” on Telemundo, and host of “Tu Mañana LIVE!” on Sirius XM. I’ve been wanting to meet him for quite some time– and here he was, inches away from me!
Sharing a special moment with Jorge Bernalof Telemundo’s “Al Rojo Vivo” during the Toyota dinner. Thanks, Toyota!
Over dinner, we were able to learn about some Toyota’s social initiatives. Toyota is currently focusing on growing programs in the following areas: education, environment,and safety. (To learn more about all of these programs, please visit the Toyota In Action blog.)
The bloggers and communicators were able to express our own ideas and opinions on a variety of topics, and basically outline what matters to us. The stories we shared ran the entire gamut of hilarious, moving, compelling, and informative.
There was definitely an underlying current at the dinner table– a desire to effect social change. I will always be grateful to my friends at Toyotafor making this all possible!
(From left to right: Javier Moreno, Álvaro Castillo, Heather López (seated), me (seated), Javier Mota, Jorge Bernal (seated), Jeannette Kaplun, and Janice Lusky-Greenspan. Photo courtesy of Jeannette Kaplun of Hispana Global.
There are more photos to come on Espresso con Leche, plus an interview with Javier Mota of “Autos 0-60″ on Sirius XM Radio Channel 146! Thank you so much, Javier, for interviewing Javier Moreno and myself!
3. Attending a private screening of “Filly Brown” and chatting with the cast during an exclusive Q&A session, followed by an after-party at The Stage!
Yep. This actually happened.
And yep. He really is that awesome. What a classy, fun guy!
Earlier in the day, I had a *totally chance encounter* with Lou Diamond Phillips in the lobby! We weren’t even at the screening yet! Of course, I never miss an opportunity to talk to celebs about The Cause.
The stars of “Filly Brown” and the Director/Writer/Producer, Youssef Delara, held a Q&A session immediately following the film screening.
With Gina Rodríguez, star of “Filly Brown,” during the after-party at The Stage. She is super sweet– and crazy talented!
Lou Diamond Phillips tore it up with “Knock, Knock, Knockin’ on Heaven’s Door.” Oh, yes, he did!
4. The Adelante Movement
One of my absolute favorite moments was meeting longtime online friend DanPérez– blogger, filmmaker, philanthropist, and “all-around nice guy.” Words can’t express what finally meeting him meant to me! Love you, hermano!
I know many people will think the Adelante Movement is just for women, but I know at least several guys who were “man enough” to stick around for this spectacular experience! One of them is my very good longtime friend Dan Pérez, who I got to meet(finally!)for the first time during Hispanicize. That moment was priceless to me! Getting to share it with our mutual hermano, Juan Alanis of Juan of Words, made it all the more special.
Familia. I love these boys so much!
Clockwise from top right: With NHLI founder Maria Elena Toraño; with Rita Moreno of “West Side Story” fame; with Charo, the “Cuchi Cuchi” girl; Nely Galán interviews Charo onstage; with Nely Galán.
5. Hanging out with and interviewing Los Tweens!
What can I say about Los Tweens? Founders Cristy Clavijo-Kish and Katherine Dobleare doing such a fabulous job of raising kids who are at once socially conscious and aware of their own potential. They are now “paying it forward” with their work for Los Tweens, where they share advice, tips, and stories with other multicultural parents of children ages 7-12.
Of course, being raised by blogger parents, the youngsters want to get in on the fun, too! That’s why Cristy and Katherine have created My.LosTweens.com, a safe place where tweens can interact and share their own experiences, traditions, interests, etc.
Here’s a really cool video that I did with Maddy, Sophia, and Olivia!
Thanks so much, Los Tweens! I hope to someday host your Girl Scouts troop in Orlando.
Maddy, Olivia, Sophia, and Cristy (the twins’ mom) from Los Tweens. (Where’s Katherine?
6. Connecting with Sonia Velasquez.
Oftentimes, I’ll attend a conference, anticipating to run into a friend, and we’ll always miss each other, or only see each other once, in passing.
I metSonia Velasquez on Monday, when my family arrived in Miami, and she was the guest of honor during the Sherwin-Williams #SWpintura event. I feel blessed to say I saw her every day until I left on Sunday! We were able to have real, honest conversations, soul-to-soul. There are a lot of people I’ve known for several years. Few people actually talk to me on a soul level like Sonia did– within hours of us knowing each other.
Sonia Velasquez and me. This woman has a heart of gold. So Blessed to now call her a friend!
Her advocacy work for AIDS and domestic violence causes, in addition to her job as host of Extreme Makeover: Home Edition Latin America, make her one of the people I was most looking forward to meeting! And…it was just icing on the cake that she joined my “Blogs with a Cause” panel.”
I want to be just like Sonia when I grow up!
Sonia and me by the pool, catching some rays of sunshine– just minutes before I caught a few too many!
7. Emilio Estefan.
I remember maybe about four or five years ago, being in Miami on vacation with Papi and Mami, taking one of those cliché boat tours where they point out all the mansions of the city’s hottest celebs.
We saw Emilio and Gloria Estefan’s house. I bet the extent of my thoughts was, “Must be nice.”
And then, years later, this happened…
Emilio and me. Gloria was right– eventually the rhythm IS going to get you!
OMG. I’m in the Target #SeHablaMúsica Lounge and Emilio Estefan is hugging me. As Mami takes our picture, he says, “You’re small, just like Gloria.”
OMG. Emilio just drew a comparison between his wife and me. He’s comparing me to Gloria, the Gloria!
What a friendly, classy, awesome gentleman. I will never forget this moment!
8. The McDonald’s “Me Encanta” Yacht Party!
What happens on the boat, stays on the boat– and on Twitter, on Facebook, on Instagram, on Foursquare, on Tumblr– and if you hit the photo booths, they give you a copy to take home!
The McDonald’s #MeEncanta Yacht Party for Bloggers and Journalists, celebrating the Chicken McWrap, was, hands-down, the most fun one can have on the water!
We were treated to drinks, hors d’oeuvres, the best party music, and a floating dance floor (you know, ’cause it’s a boat) for several hours!
9. Carlos Ponce
Let me say that again. Carlos. Ponce. Man, it felt good saying that!
Right before Carlos took the stage to accept his Latinovator award and be interviewed onstage, my friends Vanessa Smith and Janice Lusky Greenspanintercepted him and I got to meet him!
I just handed Carlos Ponce my business card. Carlos has my card. Heck– he has my number. Call me, maybe?
Okay, so I gave him my elevator pitch about The Cause. This was really when I was supposed to sing a few bars of one of his songs and persuade him to let me be a back-up singer for him!
10. The “Blogs with a Cause” panel.
There’s nothing I can say about the panel I moderated without practically bursting into tears. Um, not practically. Actually. Because organizing this session, coordinating with the girls, and actually connecting with them in person was one of the most spiritually enriching experiences of my life! I can honestly say I went to Miami barely knowing these women, and I left with four new best friends.
Denisse, Debbie, Teresa and Sonia– I owe you an overwhelming debt of gratitude for your commitment and your enthusiasm in joining the panel. When Manny asked me to “put together a panel” for Hispanicize, I thought it would be easier to master underwater basket-weaving rather than find a group of at least three people who not only were passionate about a cause, but were fluent in distributing their message across social platforms. Together, Manny and I foundfour.
As they each elaborated on their respective causes and initiatives, and as I asked them questions, I couldn’t help but be in humble awe at the magic that was unfolding. Here were four women from different corners of the U.S. with very different projects, coming together for a common purpose: to educate the public about very urgent, pressing issues in our diverse society.
We also got some wonderful questions from the audience. They went straight to the point– they each wanted to know how they, in turn, could effect change in the world using social media. We discussed how some of them are balancing their “day jobs” with their labor of love, and how we can make money while advocating for a worthy cause, too.
I think the best compliment we received after our panel was from people who friended us on Facebook immediately following our session! We were very grateful to meet people who wanted to connect with us right away.
What we need is a name for this group! Unfortunately, The A-Team, the Powerpuff Girls and Charlie’s Angels are all taken.
Those who attended the session enjoyed the wisdom of these four dynamos for about an hour. But the bond that was formed among the five of us will last a lifetime.
I love you ladies. ♥
11. Meeting Janice.
You know when you have one of those moments of clarity when you just met someone, and realize that you were meant to meet all along? I had one of those moments during Hispanicize, and it wasn’t when I met Carlos, Emilio, Edward, or any of those other celebrities.
It was when I met Janice Lusky Greenspanof PRecise Communications. To call her friendly, sisterly, or even motherly at times (because I definitely needed that!), all seems inadequate. Although I’ve attended plenty of conferences in the past, in different capacities, I had never been treated quite like therock starI felt like during Hispanicize.
Janice looked out for me on behalf of Toyota Latino, and was such a fabulous facilitator of opportunities. Whenever or wherever there was someone to meet, or an event or session I absolutely needed to attend, there was Janice, making sure I didn’t miss out. I feel incredibly humbled and honored to have connected with you on such a personal level. The mofongo is on me when you come visit me!
12. Honorary Mention: The Sunburn
By now, most of my friends have seen on Facebook The Epic Sunburn that literally handicapped me from doing anything other than surfing the Internet in my pajamas for about four days after returning from Miami!
Vanessa Smith and I don’t always use the best judgment when we hang out together, and we spent a long time in direct sunlight on the pool deck after the conference was over.
Great times with one of my besties! It was totally worth it, hermana.
Ouch. Consider this an unofficial PSA for protecting your skin against the sun!
Mercifully, as soon as I posted a photo of my badly-burned back and shoulders (although the arms and legs were burned, too), I immediately received comments from friends, with tips and homemade remedies I could use. Literally, all of these products lived in our kitchen!
Mami had just a little too much fun mixing a potato salad on my shoulders!
The Human Salad Bar. On my shoulders: orange blossom honey, apple cider vinegar, dijon mustard, redskin potato peels. Yum.