Social Media Movement Asks Why This Deadly Form of Breast Cancer Is So Underfunded

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Beth Fairchild has stage IV metastatic breast cancer, which means the cancer has spread from her breast to other parts of her body. She’s tired of seeing money spent on “pinkwashing” and awareness campaigns rather than on researching treatments that could help keep her and other stage IV patients alive. So she launched a social media rally, Stomp Out BC Monday, to make her message heard. All day Monday, March 2nd, she’s inviting everyone to use the hashtags #metsmonday, #bckills and #dontignorestageiv on Twitter, Instagram and Facebook to get the topic trending.

It’s important that we’re heard because people are spending literally hundreds of thousands upon millions of dollars on pink ribbon merchandise, donating to Susan G. Koman, doing the walks for a cure,” Fairchild, who lives in Craven County, North Carolina, told WCTI12 News. “Two percent of the money [raised for breast cancer research] — 2 percent — goes toward research for [metastatic] treatments that keep me alive and for research that will find us a cure.”

No one dies from cancer that remains in the breast — it’s only when it spreads to other vital organs that it becomes deadly, according to the Metastatic Breast Cancer Network.

People and organizations have been voicing their support for Fairchild’s campaign on social media, calling for an increase in funding and attention toward metastatic breast cancer:

To help spread Fairchild’s message and learn more about stage IV metastatic breast cancer, search the hashtags #metsmonday, #dontignorestageiv and #bckills or visit the campaign’s Facebook page.

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7 Films That Tried to Accurately Depict a Character With Autism

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In a film industry that tends to glamorize and oversimplify disease and disability, autism isn’t always accurately depicted. It’s a frustrating reality, especially if you know firsthand what it’s like to live with the condition.

The Mighty decided to take a look at seven films released over the last 30 years that received praise for how autism was portrayed. Take a look:

1. The Story of Luke (2012)

When his grandmother and caretaker passes away, Luke (Lou Taylor Pucci), a sheltered 25-year-old with autism, must learn to navigate an unfamiliar world. Luke determinedly sets out to find a job and fall in love.

In an interview with Disability Scoop, Alonso Mayo, the film’s writer and director, said students at the school his mother runs for people with developmental disabilities inspired him to write the script. “They wanted a girlfriend, they wanted to start living life on their own,” Mayo told Disability Scoop. “I started seeing these young adults having the same issues everyone else has around relationships and independence.”

2. Fly Away (2011)

This moving film centers on Jeanne (Beth Broderick) and her relationship with her daughter, Mandy (Ashley Rickards), a teenager with autism. As Mandy gets older and her needs change, Jeanne works to reconcile her own goals for daughter with what is actually best for Mandy.

Janet Grillo, the film’s writer and director who has a son with autism, told Bitch Media she hopes families who have children with autism find solace in having their stories told. “This is a community that has been in a great deal of pain and continues to be engaged in a very profound struggle,” Grillo said. “I felt it was important for us, first and foremost, to honor through storytelling.” She added that she sees the film as a tool of activism and hopes it has an impact on the way society views adults with autism.

3. Adam (2009)

This romantic comedy centers on Adam (Hugh Dancy), an electronics engineer with autism who strikes up a relationship with Beth (Rose Byrne), his upstairs neighbor.

Adams exhibits obsessive behavior, social awkwardness and a tendency to feel overwhelmed that’s characteristic of people on the spectrum. In a review for The New York Times, Jeanette Catsoulis wrote that Dancy’s performance is “credibly eccentric yet still accessible” and that the actor “reflects a mind drawn to symmetry and familiarity. So when the dreamy Beth moves into his building and his life, Adam… is forced to develop a whole new set of coping skills.”

4. Mary and Max (2009)

This clay-animated black comedy begins in Australia in 1976, when Mary Dinkle (Bethany Whitmore), an 8-year-old who has trouble fitting in, picks up a New York City telephone book, chooses Max Jerry Horowitz’s name at random and writes him a letter. Max (Phillip Seymour Hoffman), 44-year-old man, initially experiences an anxiety attack upon receiving Mary’s letter but decides to write back, and the two strike up a lifelong friendship.

Preferring to be referred to as an “Aspie,” Max sees nothing wrong with his condition. He writes to Mary (clip below), “I do not feel disabled, defective or a need to be cured. I like being an Aspie. It would be like trying to change the color of my eyes.”

5. The Black Balloon (2008)

“The Black Balloon” portrays an Australian family with two sons. The oldest brother, Charlie (Luke Ford), has autism and ADD. Having just moved to Sydney, the younger brother, 15-year-old Thomas (Rhys Wakefield), is desperate to make friends and live a normal life, but Charlie constantly embarrasses him. With the help of his new girlfriend, Jacki (Gemma Ward), he learns to accept his brother for who he is and stops trying to hide such a big part of what defines his family.

The film depicts the nuances of what it’s like to live with someone who has autism. Charlie can be lovable and endearing, but he also throws tantrums, screaming and inflicting physical harm on his family members. “The story elements of ‘The Black Balloon’ could have been manipulated to make the film false and cute,” Roger Ebert wrote in his review. “The film tries to be true. The uplift comes in how the family and Jackie respond to Charlie… They are focused on doing what needs to be done. Charlie is theirs.”

6. What’s Eating Gilbert Grape? (1993)

With his father dead and his mother unable to care for her children on her own, Gilbert Grape (Johnny Depp) becomes the primary caregiver for his younger brother, Arnie (Leonardo DiCaprio), a teenager who has autism. Gilbert becomes fiercely protective of Arnie, who, because he doesn’t understand social expectations and norms, is always getting into some kind of trouble.

Simon Baron-Cohen, the director of the Autism Research Center at Cambridge University, wrote that “the film has a powerful message for our society, which remains just as relevant today: that people with autism need huge levels of support and so do their (often overlooked and forgotten) families.”

7. The Boy Who Could Fly (1986)

Eric Gibb (Jay Underwood), a teenager with nonverbal autism, has a tendency to stand on rooftops and window ledges as if he can fly. His behavior alarms those around him, but when he saves Milly (Lucy Deakins), the 14-year-old girl who moved in next door, from a deadly fall, everyone begins to wonder if he really can fly after all.

This film is notable for demonstrating how people with nonverbal autism communicate with others before communication technology and devices were more widely available. “One of the things that appealed to me in ‘The Boy Who Could Fly’ is that the kid doesn’t speak,” Underwood told The Orlando Sentinel. “I would have to rely on other things rather than just my voice, like facial expressions and body language.”

How well do you think these films represented autism? Let us know in the comments below.

Read about “Rain Man” and other films that portray disability here.

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Dear Autism, This Is Why My Family Wants to Thank You

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Dear Autism,

You’re a big word!

A big word with an even bigger impact.

When you first entered our lives you took over everything. All of us. My son, TJ, obviously, but also his brother, Peter, me and his dad, Sean. You controlled everything. But thankfully, over time and with a lot of research and learning, you’re now just another part of our lives. You’re no longer all encompassing. You’ve helped us become a stronger family and better parents. You’ve brought some wonderful people into our lives.  You’ve helped us to learn not to take anything for granted and that even the smallest of accomplishments is cause for celebration. You’ve made a lot of things clearer for us. You’ve helped us separate the things that really matter from the things that simply don’t.

We’ve weeded a lot out of our former lives to make room for you. You’re messy sometimes — really messy — but there are lessons for all of us, even during those times. And finally, you’ve helped us understand both of our boys even better than we would have otherwise.

You’ve been a troublemaker, autism, but you’re also a gift in so many ways. And you’re a part of all of us forever. Just a part — you’re not everything. But for that part, I want to thank you for bringing out the strength and power in all of us Jordans. We’re a mighty force to be reckoned with because of you!

Love,

Lauren

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For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Something About a Cerebral Palsy Diagnosis That I Want Everyone to Know

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This is who I am, and there’s something I want every parent/family member and even kids with cerebral palsy to know…

First of all, to the moms, dads or anyone who raises a child with complex special needs: You are truly amazing! I know for a fact that I wouldn’t have gotten as far as I have without my family. Your child will need you every bit of the way. I bet this isn’t exactly how you expected things to turn out, but if you have come this far — then you can do anything, even if the obstacles seem insurmountable. There’s great strength to be found in the human condition.

There will be days, terrifying days, where you’re uncertain and feel like crumbling against the weight of it all, but I encourage you to hold on just a little bit tighter to each other. Don’t alienate yourselves or try to face everything on your own. In the face of great difficulties, you’re strongest as a unit. Moms and dads, try not to neglect yourselves for the sake of your children. They will need you, but you have to be healthy too. Remember that in your child’s eyes, you’re the industrial strength super glue that holds the fabric together. As the parents, you guys are a team, so take the time to go out on dates and spend time together alone. Not only is this good for you guys, but it expands your child’s life as well by introducing other people into their world. Also take special care in spending time with your other children. They need to know and understand they’re just as important and special and worthy of being loved.

Don’t worry about what your child isn’t doing — just focus on right now. When I was growing up, I’d like to have thought that my family had some sort of idea or fantasy of what my life could have been like — and there were nights where I went to bed worried that I’d disappointed them somehow. Now I know this wasn’t true. Every day that your child is here is nothing short of miraculous. They’re perfect, despite all the challenges they’ve faced. Celebrate that! Dream big for them because you want them to have opportunities like every other kid. But focus small. Revel in a smile or word or productive therapy session. It makes us so happy to see you happy. You’re truly a team of amazing individuals.

Now, there’s something I want your child to know. If they’re ever told the phrase, “I just don’t think that it’s possible,” then I encourage you to smile,and maybe even laugh. Nobody knows what your child is or isn’t capable of. Even if the victory may seem small, a victory is still a victory. Never give up hope because at the end of the day, that is what carries us through. At the time of my diagnosis, the first thing the doctor had said was to expect nothing of any great consequence. So in spite of his words, my family and I expected something. At the time something was unclear, but something is completely different from nothing.

I’m happy to report, that since that day, I went on to be placed in mainstream school, graduate high school with full honors and will someday hope to have a successful and extraordinary life. It’s good to set important goals for your child and support them in achieving them because you never know what their exceptional lives hold. After all, they were raised by exceptional parents.

Never give up because there’s a whole world out there. And no footprint (or tire track) is ever too small.

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The Wheelchair That Changed My Life in a Way I Never Expected

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Almost three years ago, I was going through two big changes in my life. The first was one many people go through: I’d just graduated from high school and was preparing for move-in day at the University of New Hampshire. The second was a bit different: In college, I’d be using a power wheelchair for the first time. So during my last summer vacation before college, my parents and I picked a day to visit a local store that sells wheelchairs, so I could try out some chairs. I was ready to learn all about the wheelchairs so I could make a good decision.

I wasn’t expecting to learn something about them that would change my life.

We went into the store and met the salesperson who would be helping us, and she started showing us the various kinds of wheelchairs. I had no trouble driving any of them, since I’ve been playing video games for as long as I can remember. During all the driving around and switching between different chairs, there was one wheelchair that kept catching my eye. It was different from the others because it had a weird metal cage thing attached to it, right in front of the footrests, and next to it was a soccer ball that looked twice the size of a normal one. I didn’t really know what to make of this, but as a big sports fan, I was definitely interested. At some point, I asked the salesperson what the chair was for, and she explained that it was for playing Power Soccer, a sport designed specifically for power wheelchair users. Even better, she then told me there was a team based at the University of New Hampshire. What a coincidence, right?

The existence of a sport played in power wheelchairs was significant for me in a couple of ways. At that time I’d become a huge soccer nut. I watched soccer, followed soccer news, played soccer video games, and now I had the chance to actually play soccer. This was also great because, due to the nature of my disability, I’d played on sports teams since I was old enough but had to stop when I was 12 because it was too difficult. Now I could play again. It was exciting. It gave me something to look forward to once I started using a wheelchair, which made it easier to make the transition.

Soon after that day at the store, I sent an email to the coach of the Northeast Passage Power Soccer team, and she put me on the mailing list for the team and told me they would have a chair for me to use when practices started. A couple of months later in October, I was playing my first Power Soccer games, and the team earned our first win of the season. We had a great group of players, and I had a blast, which is still true halfway through my third year on the team. In that time, I’ve played with and against many great people, from kids as young as 8 years old to adults older than my parents, with a variety of disabilities. Despite our challenges, we’re all athletes, even though we rely on an expensive combination of metal, wheels and electronics to get around. Hey, if NASCAR drivers are athletes, so are we! Power Soccer changed my life, and I think it changes the life of anyone who gets a guard bolted onto their chair.

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Many people in power wheelchairs may think they cannot play a sport. Power Soccer is a great way for anyone in this situation, young or old, to prove that thought wrong. There are more than 60 teams practicing and playing across the United States and even more around the world. If Power Soccer sounds interesting to you or someone you know, I encourage anyone to get on a court and become an athlete. Powersoccerusa.org is a great place to find an existing team or learn how to start one.

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The Jimmy Stewart Movie That Made Me Appreciate My Son’s Differences a Bit More

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Recently we had a free trial of one of the premium movie channels, and my husband decided to record “Harvey” figuring it would make a good movie for us to watch as a family. I was familiar with the story a little, but it wasn’t until we started watching it that I saw the parallels it had with our son, Griffin. It left an impression on me, one I wasn’t expecting.

Here’s a breakdown of the movie (Spoiler alert): Elwood is a grown man who has an imaginary friend named Harvey. Harvey is a pooka, a Celtic mythological creature that looks like a big bunny. Elwood walks with his arm around Harvey, introducing him to everyone he meets. Here’s where I start to think, Hey, this sounds familiar. Griffin had, well still has (although it’s quite deflated), a balloon he decorated and named Pooka. Although he named the balloon after a character from the video game “Dig Dug,” Pooka is not a name you hear every day or even every other day. Also, Griffin, like a lot of kids, had imaginary friends when he was younger. Well I should say he had imaginary siblings, whose names were Leo and Rusty. And then there’s Griffin’s name. Just like pookas, griffins are also mythological creatures.

Anyway, Elwood’s family doesn’t understand him and tries to get him to go into a sanatarium. They’re not sure what’s causing him to see Harvey. Could it be that he drinks too much? Or is it mental illness? Elwood is kind and harmless, inviting strangers to be his friend any chance he gets. Despite his gentle ways, his behavior embarrasses his sister, who feels she has to watch every move Elwood makes.

I’ve struggled with wanting to know what causes Griffin’s behaviors and how to help him, even after he was given the Asperger syndrome diagnosis. I hate to admit it, but in the beginning I thought there was something wrong with him. I would always be close by in case he said or did something someone might not understand (which frankly happened quite often). His behaviors embarrassed me because I believed they were a reflection of my parenting. All I wanted to do was help him, and it seemed like no matter what we did, nothing worked.  I know I also cared way too much what others thought. To be honest, even now I sometimes still do. I do know now there’s nothing wrong with Griffin. He just needs time, things explained in a way he understands, patience and acceptance. He’s a complex, fascinating person. He views the world differently than most, and it’s pretty extraordinary. I see Griffin connecting with others in his unique way, and I can’t help but fill with pride. He’ll be your friend, and you’ll be better off for knowing him.

Now back to our film…

In the end, Elwood is given the chance to receive a shot that will help him not see Harvey. He tells his sister, Veta, he’ll take it if that’s what she wants him to do.

While in the waiting room, the taxi cab driver, who will be taking them all home afterwords, arrives. He starts telling Veta about the patients he brings to the sanatarium. “I’ve been driving this route for 15 years. I’ve brought ’em out here to get that stuff, and I’ve drove ’em home after they had it. It changes them… On the way out here, they sit back and enjoy the ride. They talk to me. Sometimes we stop and watch the sunsets and look at the birds flyin’. Sometimes we stop and watch the birds when there ain’t no birds, and look at the sunsets when it’s raining. We have a swell time. And I always get a big tip. But afterwards, oh oh…  They crab, crab, crab. They yell at me: Watch the lights! Watch the brakes! Watch the intersections! They scream at me to hurry. They got no faith in me or my buggy. Yet, it’s the same cab, the same driver, and we’re going back over the very same road. It’s no fun. And no tips… After this he’ll be a perfectly normal human being. And you know what stinkers they are!”

After hearing the cab driver’s take on what happens to those who get the shot, Veta is filled with regret and rushes to stop the doctor from giving Elwood the shot. Veta realizes the beauty in who Elwood is, and she doesn’t want him to change. Elwood is accepted for who he is, and others start to live in his world. They even begin to see Harvey too.

This scene captures so much of the way I feel about Griffin. Every part of him is important. His differences make him the amazing, dynamic, complex, sensitive, observant, loving soul that he is. He gets so excited about things that many wouldn’t even notice. Yes, it can be hard as hell being his mom sometimes, but the rest of the time it’s absolutely magical. I would never give him a shot that would change him. I love that he’s so unique. I love living in his world. The tough times are tough, but I’ve learned that’s part of our journey.

In some of those tough moments I do wish there was a shot I could be given. One that could equip me with the ability to communicate and help Griffin. One that could help me help him understand and express his feelings in appropriate ways. One that could make me not care so much about what others think. Maybe I’ve already found the magic shot, the magic potion. Maybe it’s a combination of unconditional love, patience, never giving up, thinking outside the box, knowing that Griffin doesn’t need to be fixed — and faith!

If I changed any part of Griffin, he would be different, I would be different. He wouldn’t be who he is, and I wouldn’t be who I am. And thanks to Griffin, I can say I like who I am and who I’ve become since being his mom. I admit it can be hard being different. But I like that we’re not perfectly normal human beings, because… you know what stinkers they are!

Follow this journey on What Will This Day Bring?

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