How I Found My Voice as an Advocate for Treacher Collins Syndrome

Guest Blog By Cynthia Murphy
Contributor
Disorder

I wasn’t born an advocate for Treacher Collins syndrome (TCS), and if anyone had asked me what I wanted to be when I grew up (which few people did), it would have been the last thing to cross my mind. Like others with disabilities, I was just trying to survive and lead a normal life by pursuing my educational studies and working full time.

Later, I advocated for my friends and family because I had a law background and they didn’t. I did legal paperwork, helped get financial aid for students and wrote any number of letters to help any number of people. Yet I still didn’t consider myself an advocate, especially since a lot of what I did was an attempt to buy friendships.

Someone told me recently that she could not connect with others who had Treacher Collins. I think I might have been the same way when I was younger. I didn’t want to be in the Treacher Collins world. I wanted to be in the “normal” one. Unfortunately, the people in that world, most of them anyway, were the ones who judged. They couldn’t understand our differences; and in all honesty, we couldn’t fully relate to them either.

This year, I met two people older than I who have established careers and who are comfortable with who they are. They don’t care if other people are looking at them, and they made me question why I still do sometimes. Although our stories are different, they inspired me. About the same time I met them, I started posting articles and videos on social media. Immediately I heard from hundreds of people saying that I am an inspiration to them. Now, I get it. Advocacy is about awareness. It’s the bigger picture. It’s about relating to others in more ways than one.

There weren’t any books on craniofacial differences when I was growing up. I had no advocates. Thus, I was essentially alone in a sad, depressing world. I wanted to be part of so many things, and I couldn’t. Getting picked last for baseball or group projects in art, history, or drama is a horrible feeling. It happened to me all the time, and I hated it. When I advocate for Treacher Collins, I’m doing it for everyone who has ever suffered those feelings of inadequacy and exclusion. And I’m doing it for me.

Yes, I’m afraid sometimes. And no, I can’t always separate myself from the criticism I receive. When you’ve experienced ridicule, the last thing you want to do is speak out publicly and leave yourself vulnerable to criticism. Still, I feel I have a voice that stems from my experience, and I am committed to making it heard.

No one “kind of” has Treacher Collins — just as no one “kind of” gets bullied, “kind of” gets discriminated against, or “kind of” suffers from insecurities and depression as a result of all those. No one is “kind of” an outcast.

I’m advocating for the person who maybe only has the distinctive eye shape. I’m advocating for the young person facing his or her 30th surgery. I’m advocating for the people who, like me, have to function simultaneously between a sound and silent world.

I’m advocating for myself, and I’m advocating for you.


This post originally appeared on The Mighty, a website where people with disabilities, diseases and mental illness share their stories.
http://themighty.com/2016/04/treacher-collins-syndrome-self-advocacy-with-a-rare-disease/

When I Auditioned for ‘America’s Next Top Model’

Guest Blog By Cynthia Murphy
Contributor
Disorder

When Nyle DiMarco was named “America’s Next Top Model” in the show’s season finale in December, he was the first deaf contestant to win a $100,000 contract. While the hit show was scheduled for cancellation, this particular win ignited a national response and reaction to his success, and now the show will continue. There is no mistaking the fact that the fashion industry tends to disregard diversity.

As I watched DiMarco’s recent victory, I remembered back to 2009, as I stood with a group of other women getting ready to audition for ANTM. My friends couldn’t believe I went through with it considering I was born with Treacher Collins syndrome, a craniofacial disorder. Many of us born with Treacher Collins look at our faces and see a puzzle full of pieces that will never fit. We see a disaster. We see a miserable childhood full of bullying and a life of insecurity and anger. We’re tormented at school, ignored by the opposite sex and we usually resort to various facial surgeries to repair what doesn’t work (such as physical appearance, hearing and speech) and to make ourselves look more like the people we want to fit in with. When I auditioned for that show, I had already been through more than 10 cosmetic surgeries, and my friends told me I was pretty. But was I pretty by the standards of “normal?” As I approached that large auditorium in Los Angeles, wearing four-inch heels and a black cocktail dress, I signed in and joined the other women.

I tried making small talk, but nobody looked at nor spoke to me. Some snickered. I felt alone and stupid for being there, but I was determined to go through with the process. Finally, my group was called. We all stood against the wall, and judges walked up to us and took notes as we turned from side to side. Finally, they called the numbers of the ones who would go onto the next stage. My number wasn’t one of them. Although I lied to others about how far I made it in the process, I couldn’t lie to myself.

Now, as I watched a deaf male win, I realized he was picked, not by judges, but by the power of the people through social media, similar to the way the winners of “American Idol” are selected. I take this as positive for those of us who don’t fit the stereotype of attractive. When the people vote for what is beautiful, perhaps they will see something that fashion-industry professional judges miss.

Society today is seeking inspiration as a result of difference, and even though many of us are different, that doesn’t make us incapable of pursuing the same career goals as anyone else. There is a desire and need for diversity and more inclusive beauty standards in the fashion industry. If the definition of an authentic role model stems from all-inclusiveness, then why isn’t the industry setting an example to be all-inclusive? Why would I subscribe to a magazine full of models who are deemed the true definition of beauty, when I can never aspire to be in in that category?

We live in a world of difference, a world that so far, has not often been represented in the modeling and entertainment industries. This prejudice carries over to the professional world, where people with facial disorders want to be accepted and looked at based on our own merits.

Although I dropped out of high school, I was fortunate enough to work for one of the largest law firms in the state. The first attorney I worked for encouraged me to return to school, and I earned my associate’s and then my bachelor’s degree and graduated with honors. I have nearly completed my master’s and am studying for the Law School Admissions Test (LSAT). For the past nine years, I have been married to a good man who sees and loves the real me.

No, I won’t be auditioning for ANTM soon, but I hope that someone — many someones— with craniofacial disorders will be. I hope the perception of beauty transcends the limitations of the past and becomes more inclusive. I remember how the other contestants derided DiMarco because of his deafness, because he lived in a world of silence and was different, because, as they said, he would never fit into the high-stakes world he so aspired to join. With tears in my eyes, I heard his name called and watched his face light up in disbelief and overwhelming happiness when the American Sign Language interpreter translated the announcement of his win.

What is beauty? Here’s what I think. I think the perception of beauty changes. It always has, and it always will. Beauty is not only what is on the outside; it’s the inside that radiates on that outside. It’s a lot of people who never before had a chance. It is all of us who keep saying, “Here we are. Look at us.”

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This post originally appeared on The Mighty, a website where people with disabilities, diseases and mental illness share their stories.
http://themighty.com/2016/03/woman-with-treacher-collins-syndrome-auditions-for-americas-next-top-model/

Blow Out The Candles On Bullying & Cyberbullying For Good!

Hi Everyone!

During the month of November, Megan Taylor Meier would have been turning 23! That’s right 23 years old! Help us celebrate Megan’s birthday by giving your gift of $23 throughout November to help us achieve our goal of $23,000!

Why are we doing this?

Because over 160,000 students stay home everyday from school for the fear of being bullied. Because no one deserves to fall victim to bullies and live in constant fear that they will be tormented. Because no one deserves to feel worthless, left out, unimportant, and empty by the doing of an aggressor. The bullying and cyberbullying has gone on for too long and it’s time that we put an end to it for good!

Making your donation of $23 throughout the month of November will help the Megan Meier Foundation continue our mission to put and end to bullying and cyberbullying in our world, celebrate Megan’s 23rd birthday, and honor all lives lost to suicide.

 

Did you know that your donation of just $4.70 helps the Megan Meier Foundation impact ONE child who struggles with bullying and cyberbullying?

That means your donation of $23 will impact over FOUR children through the  Megan Meier Foundation! 

Head on over to meganmeierfoundation.org to make your donation of $23 or YOUR age in dollar amount and help us blow out the candles on bullying, cyberbullying, and suicide for good!

Thank you for your support!

XOXO

Megan Meier Foundation

Cyberbullying on the Rise, According to Boston Study

Teenage Girl Being Bullied By Text Message

As the summer of 2015 is nearing a close, we must now look forward to the fall season and more specifically, the return to school for millions of children around the world.

For teenagers, this can be an exciting time to once again reunite with their friends, teachers/mentors, and social group in general. Many parents, on the other hand, battle a mix of emotions that range from excitement for their child to continue pursuing an education, to the fear of the unknown.

Right at the top of this “fear of the unknown” list is that parents need to constantly be aware of the issue of cyberbullying. According to the news and the media, cyberbullying is becoming more and more evident in our school systems, and parents often feel strapped with what they can legally do to prevent this for their children.

With public schools and colleges beginning in just a few short weeks, the city of Boston is doing what they can to raise awareness not only in the nearby New England states, but for the rest of the country as well.

The Boston Globe reports “a study of more than 16,000 Boston-area high school students suggests cyberbullying is on the rise, most sharply with girls as victims and abetted by the prevalence of smartphones among teenagers.”

The most alarming statistic found from the study was that the percentage of the students who said they experienced cyberbullying jumped from 14.6 percent to 21.2 percent over a six-year period.

“The percentage of girls reporting incidents involving bullying or harassment on forums such as websites and social networks shot up 10 percent, while incidents targeting boys increased 3 percent, according to the study. At the same time, reports of in-person bullying decreased by 3 percent over the period.”

Unfortunately, the harsh reality of a teenager’s life in 2015 is that there is no escape – when the school day ends, the threat of being a victim of cyberbullying is just beginning.

Studies such as this one in Boston show us that cyberbullying is not only a problem we’ve started to become aware of in recent years, but a problem that is becoming worse with each passing year.

For more information: https://www.bostonglobe.com/metro/2015/08/02/study-boston-area-teens-suggests-cyberbullying-rise/R4fQNCY13o4mrpe41dwagI/story.html


With your help, we can make a difference. Help end the fight against bullying. Join the conversation using the hashtag #StopBullying and #BeTheChange.

Be Your Own Kind of Change

Be the Change pledge

When you hear the words “Be the change you wish to see in the world”, what is it that you see?

Do you see a world with no discrimination? With no broken homes? With equal opportunity?

Throughout the month, we have been partnering with Ledbetter and taking a step back to determine what it truly means to “Be the change”. Truth is, to everyone, that change means something different – we ALL want to see something different happening in the world that we live it.

So when you ask yourself, “what is my change?”, what comes to your mind?

They say a ship is safe in the harbor, but that’s not what ships are for.

As we wrap up the month of July we are challenging YOU to become the change. You are the difference maker. The world changer. The change that this world needs to see. We challenge you to live out that change and sign our pledge to live a life that changes ideas, voices, opinions – to be whatever that change is that you need to see!

Take the pledge and live for better tomorrows by downloading your own here, then take a photo and share with us all over social media with #LedbetterCampaign and #LTBTC

A Good Deed Can Brighten A Dark World

Hey everyone! Throughout the month we have been challenging our followers across ALL social media platforms to take a step outside of their comfort zone and truly think about what it means to “Be the change we wish to see in the world” and in case you didn’t already know, the change is different for everyone!

To help us continue the positivity that has taken over social media, we’re now challenging you to begin that change with a random act of kindness, and don’t worry, it’s a lot easier to get involved than you thought! Below we have listed TONS of easy ways that you can make a huge difference is someones day or even their lives!

  1. Pay for someone’s Starbucks drink. If you’re anything like the girls in the office, you can’t go a day without your morning coffee! When you’re passing through the drive-thru, give the barista an extra $5 to use towards the next person’s purchase and we guarantee that you will start a city wide phenomenon!
  2. Help carry groceries. We’ve all seen someone walking out of the grocery store with arms full of bags or even walking up to their dorm or apartment trying to make it all in one load. Lend a hand and ask them if they could use some help getting to their door!
  3. Tip big. Anyone who’s ever worked in the restaurant business knows that there are definitely slow nights. You never know what your waiter or waitress is working hard to make happen so make somebody’s day by tipping them a little extra to show that you really do appreciate their service.
  4. Welcome new neighbors. Moving into a new home is stressful! Make the move a little easier and bring your new neighbors a home cooked meal or a pitcher of fresh lemonade to make them feel welcome and at home.
  5. Walk the dogs. If you see someone walking their pets in this summer heat (especially someone elderly) offer to walk a their pet for them so that they can get inside and out of the sun, or walk with them so that they aren’t alone and enjoy the company!
  6. Pick up your trash. Wherever you are, make someones life a little easier and take 5 seconds to pick up your trash when you’re on your way out.
  7. Support a friend unexpectedly. Moments, big or small, in anyone’s life can mean a lot to someone! Surprise a friend by showing up at their sports game, performance, or special event to show you care. P.S. you may get extra brownie points if you make them a sign and a cool drink!
  8. Help pick up belongings that someone dropped. No matter where you are, dropping all your things is embarrassing! Take a second to stop what you’re doing and help them gather their things if you ever see this happening near you.
  9. Share coupons. Raise your hand if you LOVE couponing! If you have extra coupons that you won’t use leave them in the grocery store aisle with the product for someone else, or hand them to the person behind you if you see that they have items that go with the coupons.
  10. Hold the door open. Call us old fashioned but this small act goes a long way! In a crowded space, let others walk through the doorway while you hold the door for them.
  11. Buy someone’s vending machine treat. Grab and envelope and tape money or coins to a vending machine (or leave your change) so that the next person to use the vending machine has their treat covered.
  12. Leave a note for the mailman or UPS delivery man. It’s the little things that go unnoticed more often than they should! Say thank you to the person that delivers your mail and packages every day to show that their services are recognized and appreciated.
  13. Leave a positive comment on someones social media. Whether you just comment to tell them that you like their outfit, or that their hair looks good, or even that it’s just a really cool picture – bring the positivity to social media! You never know how much a positive comment could mean to them!

What is there to wait for?! Get moving with your acts of kindness and share them with us using #LTBTC and #MMFRAK

Social Media: Oversharing and Privacy

cybersafeWe hear it all the time – we need to be cybersafe each and every day. What exactly, though, does being cybersafe mean? While formal definitions will vary, “cybersafe” can be summed up quite effectively as “the safe and responsible use of information and communication online.”

Unfortunately, the issue of safety on the internet doesn’t hit home with most people until they hear about a tragic story in the news or are informed of the eye-popping statistics that have been researched.

If you are an avid follower of the Megan Meier Foundation blog or have seen our #TipTuesday or #FactFriday weekly trends on Facebook and Twitter, you may have come across a few of these eye opening statistics in your community:

  • 42% of kids have been bullied online
  • 75% of kids have visited websites bashing others
  • 81% of teens think bullying online is easier to get away with than bullying in person
  • Only 1 in 10 teens tell a parent if they have been a victim of cyberbullying
  • Fewer than 1 in 5 cyberbullying incidents are reported to law enforcement

Or…

  • Save all the evidence! If you’re experiencing cyberbullying, take screenshots of everything. This gives you reinforcement if things start to get too out of hand.
  • Contact the police. Cyberbullying laws are evident throughout the United States today and police have the power to help you in such cases unlike years past.
  • Protect your accounts. Be aware that social networking outlets (Facebook, Twitter, etc.) have significantly improved their privacy policies over the years. Never share your passwords with anyone and don’t accept random friend requests from people you have not met.

But what is and isn’t appropriate to share online?

 At one point or another, we’ve all said or did something we wish we could take back. When we do it in person, sometimes we can get away with it because it is not documented. However, whatever you say on social media IS documented and can be used against you down the line.

With that said, here is a list of 5 do’s and don’ts (on a list of many) when it comes to what is appropriate to share online:

Appropriate

  1. Breaking/important news in the media.
  2. Vary your posts – be different and unique.
  3. Use humor! (As long as it doesn’t attack another person(s) or group.)
  4. Milestones and other important date related news.
  5. Photos/videos that capture the pure happiness of your life and won’t degrade others in any manner.

NOT Appropriate

  1. Your address and phone number.
  2. Personal finance information.
  3. Your password(s) to anything.
  4. Personal conversations.
  5. Photos/videos depicting illegal or frowned upon activity of any sort.

Keep your digital footprint clean and remember this golden rule: Your social media accounts are NOT a diary. Their purpose is not to feel compelled to share every second of every day with your followers. Think of it this way, if you already posted 15 photos and videos of the concert you were at Friday night, before you’ve even left the concert, what are you going to have to talk about when you see the rest of your friends? Chances are, they’ve already seen your photos, right?

Keep your private moments private and be aware when you find yourself oversharing personal moments, no matter how happy or exciting they may have been. Or as we like to say; hang up and hang out!

Protect yourself using your privacy settings in social media.

 One of the most important aspects of the social media experience is understanding the privacy settings of various networks and knowing your rights when using them.

Whether you’re on Facebook, Twitter, Instagram, or any other social media network, there are rules and regulations that all individuals must follow, or risk facing the consequences.

When an individual signs up for any social networking account, they agree to be respectful in both what they post and the manner in which they communicate with other users.

Unfortunately, there are thousands of people who ignore these precautions set aside for the safety and enjoyment of others, and that’s when action needs to be taken.

Additionally, it’s crucial to the social media experience to know the difference between a public and private profile. More times than not, anyone who has a public profile does so without putting much thought into it (they are public by default), and the more aware/educated users manually change their profiles to private.

You can learn more about social media and how to make reports by visiting our website at the Megan Meier Foundation (links below):

Report Social Media     Social Media Help

Social media friends/followers – how important are they really?

 A huge friends/followers list is not all it’s cracked up to be. The person with 2,000 followers, has 2,000 people that are constantly aware of their every move through the use of social media and opens the doors to potential dangers down the road.

Think about this example. Let’s say Person A (we’ll call her Sam) has recently become a target of cyberbullying through the use of Facebook. Sam has 1,500 friends, the majority of whom he’s never actually met in person.

Although Sam has taken the right step to make his profile private, the truth is his personal information is still available for those 1,500 friends who he is friends with on Facebook. He can go through his list of friends and try to identity who may be attacking him, but that is surly a long, exhausting, and potentially never-ending and never-resolving situation.

Person B (we’ll call her Lauren) has 80 friends on Facebook, all of whom she knows through family, school, work, and recreational sports.

Like Sam, Lauren has a private profile but in her case, only those 80 well-known individuals have access to her information. Should Lauren ever become a target for cyberbullying, her awareness and decision-making to think ahead would benefit her greatly.

The bottom line: Becoming friends with people you have never met, nor will ever speak to on the social media pages does nothing to improve your social standing. Only add trusted individuals on these websites.

The internet and technology in general have opened so many doors for our generation, however, that hasn’t come without it’s fair share of challenges.

Most of the activity that the average person experiences online may seem innocent and completely harmless, but real-life dangers can always be just a click away.


With your help, we can make a difference. Help end the fight against bullying. Join the conversation using the hashtag #CyberSafe and #BeTheChange.

Megan Meier Foundation Teams Up With Ledbetter!

Hey Guys!

In case you haven’t already heard, there is something BIG happening here at the Megan Meier Foundation!

During the entire month of July, we have teamed up with Ledbetter to raise awareness on the devastating effects of bullying, cyberbullying, and suicide, and shop with purpose! Ledbetter, a small company located in Denver, Colorado, has released six special design t-shirts AND two exclusive headbands to benefit the Megan Meier Foundation through your purchase – but don’t wait, these items won’t be here for long!

Since birth, Founder and CEO of Ledbetter, Joshua Ledbetter, has been deaf and faced many obstacles growing up because of his disability. After years of being faced with tremendous obstacles because of the challenges his disability presented, he still faced discrimination and overwhelming rejection after graduating from college  when searching for a job that fit his degree. Joshua has since set out to make a difference, not only for himself, but for others around him – sparking his groundbreaking idea for Ledbetter.

Originating from his own last name, Joshua and the rest of the Ledbetter team have set forward to pursue their mission to “Live, Love, and Learn Every Day Better.” After reaching out to the Megan Meier Foundation earlier this summer, they developed new ways to pursue their mission through products that directly benefit the Foundation. When they heard our story about how “Live” came about, the objective became pretty clear: “Live to be the Change… Live Every Day Better.”

Exclusively during the month of July, Ledbetter has launched six campaign exclusive t-shirt designs along with two campaign exclusive headbands that give $3 from each purchase back to the Megan Meier Foundation!

all merch

It’s amazing to see just how far the Foundation and Megan’s legacy has come since 2006. At the time of Megan’s tragedy, there were NO laws that prosecuted cyberbullies and no stories that shook our world quite like hers. With action and awareness of bullying, cyberbullying, and suicide related issues becoming slightly more prevalent, our nation has taken great strides in taking action.

We are the world changers. The difference makers. We truly are the change that this world needs to see.

It is time for YOU to please join us in making a difference and becoming that change that YOU would like to see in this world.

Don’t miss out on your opportunity to become whatever the change YOU need to see in this would and grab your limited edition campaign gear today and stay tuned into all our social media to find out how you can get entered to win some sweet giveaways!

To learn more about the Megan Meier Foundation and Megan’s Story, click here.


Follow the progress of our July campaign using the hashtag #LedbetterCampaign #LTBTC

Out-Of-School Time Programs Provide Youth With Bullying Help Resources During Summer Months

blog 15 pic

As we know, bullying among the youth has become a major issue in the United States over the last 10-15 years. Although technological advances have improved many aspects of our daily lives, it has also negatively impacted others (the number of bullying/cyberbullying-related cases, for example) as well.

Children (K-12) are generally in school for nine months out of a typical calendar year. Victims of bullying have the opportunity to reach out to friends, peers, teachers, and counselors (among others) on any given day at school.

But what about the summer months?

It’s important to point out that bullying never stops. We as a society tend to associate bullying with school, but that is not always the case. For years now, we’ve needed more resources that the youth can turn to in times of need when school is out of session.

Out-Of-School Time Programs are the latest and greatest solution to this problem. “Out-of-school time programs fill the gap for working parents and communities concerned about how and where youth spend their free time. Professionals and volunteers in this field cover a diverse range of activities and organizations.”

Take a look below to learn more about how Out-Of-School Programs are geared to make a difference, according to stopbullying.gov:

  • They assist in extracurricular activities as coaches in sports and recreation; instructors of dance, art, and music; advisors for academic clubs; and leaders of faith and worship groups.
  • They work part-time or full-time to teach new knowledge and skills in after-school and tutoring programs; computer labs; homework centers; apprenticeships; entrepreneurial and job training; and in experiences in camping, scouting, and service learning.
  • Many are staff, volunteers, andyouth leaders with large national and community-based organizations (e.g., Boy Scouts, Girl Scouts, Boys and Girls Clubs, Big Brothers and Big Sisters, 4-H Clubs and YMCAs, along with many others) who enhance every aspect of children’s lives—academics; social, artistic, and athletic skills; morality; and citizenship.

Since this is a fairly new idea, the research and data for Out-Of-School Time Programs results cannot be determined. However, it is clear that the adults who devote their time to helping the youth are seeing that their efforts make a difference in the lives of the children.

To learn more about the programs and all that they do, please visit stopbullying.gov and search for the Out-Of-School Time Programs link.


With your help, we can make a difference. Help end the fight against bullying. Join the conversation using the hashtag #StopBullying and #BeTheChange.

Good morning Baltimore.

Came across this blog today and have since felt the overwhelming need to share with you all. Please, don’t stand in silence any longer. Talk about the emptiness.

hannah brencher

Screen Shot 2015-06-24 at 11.19.16 PM

I take two white pills every night before I crawl into the sheets. They are a reminder to me, more than anything, that November happened.

November happened.

And so did December. January. February. A collection of months I wished, for so long, I could scrape off the calendar. I thought I knew darkness before those months. In a lot of ways, I didn’t know anything until those months came crashing on top of me. Sometimes you think you are fine until everything around you falls apart. And then you see the truth: everything was not fine. You were dying inside. You were clinging to other people to complete you. You were desperately in need of rewiring.

I think thereare times in our lives when we need an upgrade. Or a software update. And then there are times when we need all the little things inside of us to…

View original post 2,261 more words

WE BELIEVE THAT THROUGH EMPOWERING OUR SOCIETY WE CAN WORK TOGETHER TO MAKE A DIFFERENCE AND CREATE A SAFER AND KINDER WORLD

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