What is spina bifida? We explain it with Once Upon a Time

what is spina bifida?

October is a very important month, can anyone guess why?

If you said Halloween, you would only be half right. October also happens to be Spina Bifida Awareness Month. Before I give it away and tell you all about it, let’s take a little quiz to see how much you might already know about it.

Pop quiz!

Learn about spina bifida with this quiz

Not so bad right???
I’m not gonna give you the answers just yet, but I will tell you that two out of five of these statements are true! Now I bet some of you are worried that your crazy co-worker or next door neighbor has Spina Bifida and now you’re gonna catch it. AHHHH!!!! Well, rest easy. Spina Bifida is not something you catch like a cold or a football, you’re born with it.

In order to best understand what Spina Bifida is, let me try and explain it by using objects and characters from a show that you may be familiar with, Once Upon A Time.

  • Belle’s chipped cup

Like the chip in Belles cup most people born with Spina Bifida have defect in their spine that does not close properly while in the womb. There are a few different levels of Spina Bifida, but all involve an imperfection in the spine/back.

  • The original 8 dwarves

Every day there are about 8 babies born with Spina Bifida, just like the original 8 dwarves (RIP Stealthy). It is the most common permanently disabling birth defect in the United States

  • Pinocchio aka August Booth

Depending on where the opening is in the spine, there are several varying levels of disability and nerve damage. As August was turning back into wood, he had several characteristics as someone with Spina Bifida:

- Difficulty walking: paralysis (depending on where “chip” is on back; can cause one to walk like a penguin)

- Loss of feeling due to nerve damage

  • Hook’s Hook

Many people with Spina Bifida require assistive and adaptive equipment in order to function in a more independent manner. Killian needs his hook, and people with Spina Bifida need things such as leg braces, wheelchairs, and crutches to help them to get around easier.

  • Henry’s Storybook

Nobody knows the origin of the book just as no one knows exactly what causes Spina Bifida. Although research has shown that Folic Acid plays an important role in the prevention of Spina Bifida.

Given all this new information you have learned about Spina Bifida, what is it exactly that I want you to do with it? Great question! If it isn’t obvious by now, I have Spina Bifida but I am also a person. I have my own identities other than the one given to me by my disability. I am Jenny and I am also an individual with a disability. I am both!

I want each and every one of you who is reading this to take action and continue to educate yourselves on the many other aspects of Spina Bifida. There is a struggle within each individual, a good versus evil if you will, to either give into the disability and let it overpower them, or to push forward and make the most out of the cards that they have been dealt.

spina-bifida-awarenessIt is true, people with Spina Bifida can do extraordinary things! If Once Upon A Time has taught us anything, it’s to have hope. Hope begins with awareness and understanding. Please help to give hope to those with Spina Bifida who are afraid to be themselves.

Like Emma who is uncomfortable with the magic that is inside her, many people with Spina Bifida are struggling to be accepted as valuable members of society and as human being who are much more than just their disability.

So please continue to educate yourself and spread the word about Spina Bifida not only during this month, but throughout the rest of your life.

Creating a difference in the world takes a year-round effort, and it is ducklings like you who can make a difference in people’s lives. I hope you go out there and do amazing and magical things!!

For more information about spina bifida, click here!

- Jenny

learn about spina bifidaJenny is 25 years old, and she is an individual with Spina Bifida. She is a family therapist at a practice in Illinois called the Center for Identity Potential. When she is not working she enjoys the arts, such as singing, theater, drawing, and making fan videos.

To all the LGBT youth: there will always be someone out there willing to help


Purple is now the color that will always come to mind whenever people want to create awareness against bullying the LGBT youth.

The initiative has taken the social networks as well as various websites, and mainstream media, so more people know how serious this matter is, and how important is the role you and I have in our society to help others who need us.

Tips and facts about bullyingEarlier today we posted these tips and facts about bullying, that may well apply to the Lesbian, Gay, Bisexual, and Transgender teenagers and young adults out there who are not only struggling to find their true self, but also need to deal with feeling accepted and loved by their families and friends.

One of my favorite from that list is the one that says that, according to a survey, 70% of kids argued that they felt good whenever they were able to stand up for someone who was being bullied.

We are all different. We are all special in our own, awesome way. The moment parents, children, and friends understand that we can embrace our differences and appreciate what makes us unique, that’s when hurtful actions will become less and less. Remember that you are not alone, that it’s not okay for others to treat you badly, and that there is a complete network of sources where you can find help.

An ideal scenario right?

Acceptance in the LGBT world

This subject brings to mind a film that will be released on DVD very soon, and that deals with this subject in a very particular way.

It’s called Once Upon a Time in Queens and it’s the story of how an ex-mob boss who was released from prison has to deal with life after so many years behind bars. When reunited with his family, he finds out that his daughter is gay, and he needs to find a way to comprehend and deal with this issue.

I won’t spoil you! but I can tell you that this movie can be a great lesson for parents and relatives. It’s about acceptance. If an old, hard-headed, ex-mafia boss can learn to accept his gay daughter, anyone can.

We leave you with the trailer. And remember, let’s keep spreading awareness and showing others that respect and love is above any sort of violence.

Learning to live with an obsessive compulsive disorder

Living with OCD

Have you watched Jack Nicholson on As Good As It Gets? He won the Oscar for Best Actor for his portrayal of a person with a few quirks, some which I still remember to this day. OCD awareness week is also held in October, and we wanted to show you all a close look at what it’s like to live with this disorder.

First, a disclaimer. I want to make it clear that I have very mild OCD, my symptoms peak at 17 out of 40 on the Yale-Brown scale which is in the moderate range. This means that even at its most severe my OCD only ranks as moderate. Therefore, my experience is going to be very different from someone with more severe symptoms. If you feel you may have a form of anxiety disorder or OCD I strongly encourage you to get in touch with a mental health professional, either through your doctor or an appropriate organisation.

Okay, now that that is out of the way I want to share with you what my personal experience of this illness is.

Imagine a hamster ball

I was diagnosed with an anxiety disorder at 16 so I’ve had plenty of time to learn to live with it. My symptons are mild enough that I can manage my condition without medication and I am no longer in therapy. Instead, I have established a lifestyle which, while not terribly exciting, does allow me to be happy, and minimises anxiety-inducing encounters.

disney-bolt-rhino-hamsterFor me, managing my OCD is about routines, and control of my personal space. The best way I can describe it is to imagine one of those plastic balls you put a hamster in so it can safely run around and then picture it rolling around on a track.

That’s how I manage my life, by being in control of what’s in my hamster ball and keeping it running on the same track. Of course, I do allow additions to it or even changes to the track, but it takes me time to adjust to even the idea of changes.

OCD has a stereotype of people who are obsessively clean and while that is certainly a common compulsion, what is less well known is that people with OCD can also be prone to hoarding.

For example, I save the tags from clothes I buy, sorted into bags from their respective shops. It’s not a disruptive enough compulsion to have a major negative impact, but I do experience anxiety symptoms if, for example, the assistant removes the tags before wrapping my shopping. I do also, in common with many OCD sufferers, wash my hands often. Sometimes for no particular reason my hands will suddenly feel dirty and I will have to go and wash them.

I’m also very particular about what kind of lotions I can use on my hands. Anything I can’t rub in completely is a no go. I also can’t stand the feeling of hand sanitiser gels on my hands, so I will go out of my way to wash them properly rather than use the gel.

Textures… :S!

As I’m sure you’ve guessed, my sense of touch is where I feel the impact of having OCD the most. Different textures can trigger anxiety symptoms for me, things that are sticky trigger the worst symptoms, and I generally avoid touching things as much as I can (unless they’ve been admitted to my hamster ball).

I don’t like having other people touch me, either, and avoid contact with anyone but those I am most comfortable with. It can take me a year of knowing someone to get to a point where I’m comfortable enough with them to hug them. I love when the weather is cold enough for me to wear gloves, because that layer of protection reduces my overall levels of anxiety quite a bit.

Another way texture impacts my life is in what I eat. I find that a lot of food textures, or rather texture combinations, make certain foods impossible for me to eat. This includes things like sandwiches, as I struggle with the combination of the bread and filling textures. I also keep different foods separate on my plate, even if they were cooked together, I have to separate them before I can eat them. Also, I have to be careful about going out to restaurants and often check menus online to work out what I can have beforehand. It requires a little extra effort but the end result is a really nice meal out I can actually enjoy!

Yes, the rituals are true

One of the other classic symptoms of OCD is performing what are known as rituals, usually multiple times. I don’t have many rituals in this category, my symptoms tend more towards patterns and routines, but those rituals I do have, I do in threes. If I don’t perform the ritual three times I can feel the knots of anxiety tightening. Thankfully three is quite a low number and there are a lot of tasks that can be performed three times without impacting your life or indeed most people noticing.

This is by no means a comprehensive look at what life with OCD can be like, and it’s certainly not even a glimpse of what someone with severe symptoms can go through, but I do hope it opens your eyes to the little ways this illness can impact everyday life, even for someone with very mild symptoms.

- Catherine

How much of my personal information is public?

How much of my personal information is public?

Have you ever asked yourself that question?

As we mentioned in our previous post, October is Cyber Security Awareness month, and it’s a good moment to reflect on how your data online can be bait for others to take it and use it.

Just to make you more conscious of how things work on the internet, here’s Maaike’s list of strategies to protect your personal information.

Your future employer might not hire you

Cyber security is one of the things I’m focusing on in my study, and we came to the conclusion in one of the lectures that the real issue here is the lack of awareness of how much of your information is actually out there for the world to see.

how much of your personal information is out there for people to see?And it’s not just about cyber crime. What if it’s time for you to look for a job, and your employers or recruiters do a search on Google, and find pictures of you drunk, for example?

What would their impression of you be? It’s a fact that recruiters do online background checks of job applicants (it’s becoming more and more popular), including checkups on social media, whether you like it or not.

Your social media pages can say a lot about you. They have all sorts of cues

  • self generated: everything you yourself post on there
  • generated by others: pictures you’re tagged in, posts other people post on your Facebook wall, etc.
  • system generated cues: the amount of Facebook friends you have, how many followers on Twitter.

You may believe it or not, but all of these cues tell people something about your personality. This is called the Brunswikian Lens Model. People make judgments about you with the blink of an eye just by looking at your social media accounts.

Scared yet? I know, we also came to the conclusion that some people aren’t even bothered by these kind of stories. But if you are, here are some additional tips:

Tips for protecting your personal information

  • A Google search about you

If you have Google Chrome, open a private new window (shortcut on a Windows computer keyboard is ctrl+shift+N, Mac is Shift+N), and start searching for your name on a search engine. Mozilla Firefox also has this option.

The reason for you to work in a private browser is that in normal browsing mode, your search results will be tailored for you based on your previous actions online (the not-so-yummy cookies, remember?)

  • No Facebook on Google, please

Click for BIGGER version

Did you know that Facebook has a setting that allows your account to stay hidden in search engines? Go right now to your privacy settings, and look for the option. Here’s a screenshot of where you can find the option to disable the search engines to link to your timeline.

  • Buh-bye tweets

There are several tools available to mass delete your tweets on Twitter. Examples are tweetdelete.com and tweetdeleter.com. Some of these should even allow you to automatically delete tweets after a certain time.

  • Instagram is all about you

You can set your Instagram account on private and only people who you allow to follow you, can see your pictures.

  • Additional info to stay safe

There is a very interesting website called Kim Komando that has lots of very useful information about cyber security. You should definitely check it out, and educate yourself about this matter.

be careful with what you post online. it can  influence your future

Special thanks to Maaike for the information for this post, and to Marlene, a victim of cyber crime, who provided us with the Kom Komando Show website.

Cyber Security Awareness Month – Take care of your info

cyber security awareness october

Cyber-bullying and cyber-crime is a real issue for anyone of any age. Bullying, stalking, scams and crimes all take place in our virtual world every single day.

Personal security is compromised when our information is made overly public…

Just think about that.

If you are on social media, there are vast amounts of people you do not actually know following your posts –if your location settings are on, for instance, those people can just show up on your doorstep. Personal safety and security aside, do you really want a random Twitter follower showing up at your house unannounced? I’d personally be creeped out.

We wanted to do this post to let you guys know that there are ways to discourage any type of creepy behaviours. Social media makes it just as easy as it is difficult to keep your personal information private.

Turn off all your devices

location-services-privacy-settingsOk, I’m kidding. But I wanted to start off there. Unless you have a business you are trying to promote and that is what you are posting about, be sure that your location services are turned OFF. If you’re posting a photo of yourself, your family, your kids, you don’t really want a stranger on the internet to know exactly where you live.

  • Take some minutes of your time to check the settings on your phone to know if this service is on or off.
  • If you use social media quite frequently, you should also check the options they offer in terms of location. You might not know that they are on by default.
  • Foursquare can be a lot of fun for lots of people, but you have a risk of being followed or stalked by the wrong people.

OMG Facebook

Facebook and its ever-changing, often elusive privacy settings. Use them. Educate yourself on them. I find Facebook is where people share very personal details about their lives. Did you know that the top of every single post you do on facebook tells you exactly who can see it?

cyber-security-awareness-facebook-privacy-settingsIf there is a globe at the top of your post, anyone who finds your profile can look at that post. For instance, cover photos can never be private –they are always available to everyone- so ensure that you aren’t posting any pictures as your cover photo that you don’t want the world to have access to.

Remember, any photo that can be seen can be saved. Profile photos seem to automatically set to the globe now when you add a new one, so make sure you change that, unless you want the world to see your selfies ;)

The last thing I want to remind everyone about Facebook is that you only have control over who sees your posts on your page. If you are posting on a friend’s page or a business page, your privacy becomes subject to their privacy settings.

If you are trying not to be found online for whatever reason, this is something to keep in mind. Also, even if you have your privacy settings so others cannot see photos tagged of you, all someone has to do is go on your friend’s page to see them –so make sure you let your friends in on your desire about your pics.

Twitter. Instagram. Tumblr. Snapchat. Etc… just remember that if it is out there, it can be accessed by people you might not want to see it. Remember when you post a photo with your location settings on, the location is embedded in the data of the photo. And it doesn’t take a pro-hacker to get that information.

There are lots of steps you can take to keep yourself safe online. We want to encourage everyone to take them.

If you’re concerned that you’re not understanding your privacy settings well, let us know. Myself at Ugly Ducklings Inc and Dana at Bullies Keep Out are kind of privacy pros… so if you want us to take a poke around your Facebook and let you know where you might be compromising your privacy, shoot us an e-mail, or leave a comment, and we will let you know.

If you want us to tell you how easy it is to find you on social media, we can do that too. If you’re being hacked or bothered on social media, Dana is an excellent source for you. So don’t hesitate to reach us. We will do everything we can to help!

- Erin

Trolls lurk on Bullying Prevention Month

Trolls lurk on Bullying Prevention Month

The word can mean so many different things to people today. Troll.

In fact, when I asked Ugly Ducklings about what a troll meant to them, these were their answers:

  • “A fairytale creature on fantasy shows and movies”
  • “A doll with fantastically fluorescent hair”
  • “An incredibly disrespectful person that enjoys hurting others with words”

I never thought that after asking the question, three completely different meanings were going to show up.

Also, I certainly wish with all my guts that I were going to talk about the awesome mythical creature that has made it into epic films like Lord of the Rings or Harry Potter or even the Neverending Story, and Labyrinth.

Even better, I wish the company that made the funny troll toys (I remember I had one with fuchsia hair!) were paying me to write wonders about these little funny, hairy little dolls so their sales would drastically go up.

Unfortunately, no.

The horror of bullying

It’s October, and it’s time to sadly remind ourselves that there is a Bullying Prevention Month, which not only refers to the normal bullies kids find at school, but it includes the myriad of people that use the internet and the social networks to harass, attack, intimidate, offend, and mock other web users.

trolls-bullying-octoberThose are the new trolls. Trolls 2.0, who came out of their caves, with their spiky clubs, and exchanged them for a computer screen and hateful words.

But then, one day, one man stood up, and used even more powerful words.

His name is Shane Koyczan. He said in an interview that the genre that can best depict what bullying is and feels like is horror. He knows it. He had to endure every second of the suffering. The unmeasurable agony that no one sees.

On how to conquer bullies and trolls

If you suffered from bullying at some point in your life you will probably agree with this:


If you are still struggling, both online and offline, simply remember that:

  • You are not the only one, and you are not alone.
  • There will always be someone willing to help you: family, close friends you can trust, a counselor, a psychologist, a priest, a hotline
  • Even though it seems endless, there will be a moment when it will all end.
  • Karma, fate, destiny, life or whatever you want to call it actually exists, and the bullies will not escape the consequences of their actions.

In Shane Koyczan’s beautiful and heart-rending piece ‘To This Day’, you can both cry and understand what goes inside a child that is suffering from this type of violence.

And then came Troll, his latest work. Amidst the pauses he makes, the moments he breathes before he keeps reading, the beautiful music, and the breathtaking graphics, you will understand how words can become the secret formula to vanquish these creeping web creatures. 

Leave your comments and tell us which was the part of the poem that struck you the most.

World Tourism Day

World Tourism Day - September 27

Sun, sea, beach, relaxation, hotels, airplanes, sightseeing… All things you think about when it comes to tourism, right? But this industry involves so much more than that.

Tourism is all about people -from all layers of society- destinations, experiences, environments and even governments. It has social, cultural, economic and political value. To emphasize the importance of this industry in all of the previous mentioned facets, the United Nations World Tourism Organization (UNTWO) introduced World Tourism Day in 1980.

The date, every year on 27th September, was chosen since it indicates the end of the high season in the northern hemisphere and the beginning of the season in the southern hemisphere. On this day, we celebrate tourism, and maybe even more importantly, we address the eight Millennium Development Goals set up by the United Nations:

  • Eradicate extreme poverty and hunger
  • Achieve universal primary education
  • Promote gender equality and empower women
  • Reduce child mortality
  • Improve maternal health
  • Combat HIV/AIDS, malaria and other diseases
  • Ensure environmental sustainability
  • Global partnership for development

world tourism dayWe leave our footprints with everything we do. Tourism in general leaves an enormous footprint on planet Earth and can have drastic consequences. ‘Sustainability’ is a word often related to tourism, as we want “to develop tourism in the most sustainable way possible”. But what does the word ‘sustainability’ actually mean? It’s a vague concept, but simply put it means that tourism needs to take full account of the economic, political, cultural, social and environmental impacts it has. An almost undoable task, made harder even by people and government’s personal interests and corruption.

But I’m not here to only point out the negative aspects of the industry. Tourism is two-faced. World Tourism Day is also a day of celebration. The WTD blogger competition for example showcases some of the success stories of this incredible industry. From voluntourism to community development and from community based tourism to rewarding traveling experiences, it’s all there.

My life and tourism

Maaike in CambodiaI have a rather long history when it comes to the concept of ‘tourism.’ About 16 years ago, when I was six, I started playing ‘travel agency.’ What I did was getting all the travel brochures my parents had collected over the years and an old computer keyboard out and I got creative with crayons and paper.

My parents and friends had to browse through the travel brochures, I would ‘check’ availability for them and ‘book’ their hotel and flight ticket. I even gave them some extra information about the destination they were traveling too (all made up with that crazy imagination of mine) and print their flight tickets (writing down some random letters and numbers on a piece of paper).

Later on, I became really interested in meeting people from abroad and learning about other cultures. That’s why I started to look for pen pals online and joined the travel website Virtual Tourist (‘’Meeting the People Behind the Places’’).

Continue reading

It’s Hug a Vegetarian Day. Can you go without eating meat?

Can you go without eating meat? Hug a vegetarian day

Ever heard of “Hug a Vegetarian Day”? I am pretty sure you think I am making this up. But no, it is real, and if you know someone who is a vegetarian, go hug them!

I have been a vegetarian for over six years now and it has really been the best decision I have ever made in my life.

I lost some superfluous weight back then, and nine months ago I got a perfect bill of physical health. My first A+!

  • An interesting fact: for every vegetarian out there, up to 100 animals are saved each year.

But being a vegetarian is not just about that. Another advantage of following this way of life is that it helps the environment, and it leads to an improvement of your health, too.

Remember, you just have to make sure you get the proteins, minerals, and vitamins you need via other sources than meat.

In fact, you can try to do what some people are experimenting on: eating vegetarian meals once, twice or three days a week. You can still make part of the change that will contribute to the world and also to yourself.

Check out how being a vegetarian can do wonders:

Helping the environment

The production of grains, fruits and vegetables:

  • Discharges less CO₂than meat. For example, one steak weighs 66 times more on the environment than one serving of potatoes does, which means that one vegetarian protects the Earthfrom approximately 1 ton of carbon dioxide per year overall.
  • Uses up to 1,000 times less water than the meat production.
  • Uses a lot less energy (for the heating of stables, and the transportation of the food for the animals)
  • Protects against overgrazing, soil erosion, and deforestation.
  • Pollutes less.

Source: Professor Jørgen E. Olesen, Aarhus University, FAO, The Council of Agriculture (Denmark), among others.

Helping the animals

Hug a Vegetarian DayIn conventional farming, the efficiency is so high that it goes beyond animal welfare -both in the stables and when they are sent to the slaughterhouse. Not even the modern fisheries production -with the overfishing, discarded bycatch, big fish hatcheries and medication- is unproblematic for the fish and our conscience.

Helping your health

There are several benefits of eating a vegetarian-based diet such as extending your lifespan. The risk of getting heart diseases or even a number of some forms of cancers lowers. You will not get any kind of meat bacteria like salmonella or campylobacter or leftover hormones, and medicine used in animal breeding.

Source: The Health Association (Denmark), WWF, British Medical Journal, among others

If you choose to get your animal products from organic farms, you’re supporting animal welfare and thereby actually helping the animals after all.

If you choose to have two -or more if you are up for it!- meatless days (Meatless Mondays, Fish Fridays. Of course you choose which days you want to eat vegetarian food) during the week, you are not only helping the environment, but you are helping your health.

It can be hard to go 100% vegetarian, but to be vegetarian for just two days a week is actually a really good way to get a healthy and varying diet. Plus, you get to try something new!

Tell us in the comments if you can dare to go at least one day without meat, and don’t forget to hug your veggie friends!

- Camilla

Losing Someone to Alzheimer’s

when is world alzheimer's day? 21 september

I never knew my Dad’s father. He was alive for 15 years of my life and he definitely was a constant in it. But I never knew him, the real him. Now that it’s September 21, and it’s World Alzheimer’s Day, I want to remember those last moments that I treasure so much.

To me he was always that grumpy old guy who -as far as I can remember- didn’t really talk to his grandchildren. I never had a close relationship with my Dad’s side of the family. I hated going to visit my grandparents because I was always bored and was rarely allowed to bring a friend. I never felt loved by them. Not until now that they both passed away.

But it’s especially my grandfather who’s stuck in me.

It’s been over nine years since he fell -maybe even jumped; we can’t prove that he did, but it’s a possibility- in the stream right by their backyard. He had Parkinson’s and Alzheimer’s. Due to his Parkinson’s, he walked around with a broomstick without the broom. He used it for support, and every night he would take a walk in the backyard.

On Monday June 13th, 2005, he took his last walk. The last couple of years of his life were really tough on him, both physically and mentally. He had to miss my Christian Confirmation because he didn’t have the strength.

One day, before the incident happened, I was lucky enough to get to see an entirely different side of him. And I’d never felt more loved than that day.

The Alzheimer’s had definitely done his damage on him and he asked about how my Mom’s side of the family was doing, several times. He forgot a lot of the stuff I told him and asked about it again and again.

I remember how he stared into the air while my Dad and his then girlfriend told my grandparents that she was pregnant and due on November. He was crying. I could tell he was sad about it, and I think that we both knew he wasn’t going to live that long.

I got three goodbye hugs from him that day. He kept forgetting that he’d already hugged me, but I certainly didn’t mind. He wasn’t someone who did that, and I don’t even remember hugging him before that day. He even hugged my then stepmother, albeit he didn’t like her.

with me 300

I guess maybe he loved her for giving him another grandchild even though he knew he wasn’t going to live long enough.

Now that he’s gone and I know him a lot more than I ever did, I have to confess something.

I kind of hate my father for never sharing him with my brother or me. Now I know that I will make sure to share him with my baby sister who I know he felt sad that he’d never get to meet -even if his death wasn’t a suicide.

Only one photo exists of him and I together and it’s one of my most prized possessions.

I love and miss you, Grandpa, and I’m so glad that I now know and understand you in a way that so many others can’t.

- Camilla