School Sends Discriminatory Letter to Student Who Uses a Wheelchair

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When Jake Wesely received what he describes as a discriminatory letter from his high school, he took to social media to right a wrong.

Wesely, 14, attends Bucks County Technical High School in Fairless Hills, Pennsylvania. He uses a wheelchair because he lives with Duchenne Muscular Dystrophy, a genetic disorder characterized by progressive muscle degeneration and weakness.

Recently, the school sent a letter to Jake’s family, and the families of about 60 other students, saying “medically exempt” students would not be allowed to participate in the school’s athletic Field Day.

The letter explained that medically exempt students would be required to wear red wristbands to separate them from the other children. If they were caught removing the bands or participating in the activities, they would face “disciplinary consequences.”

Feeling marginalized, Jake posted a photo of the letter to Twitter.

Disability activists and news organizations quickly connected with Jake online, and it didn’t take long before his school took notice.

School officials soon retracted the letter, which they’d been sending out for years, and issued a full apology, CBS News reported.

I’m happy he brought it to our attention,” Dr. Leon Poeske, the school administrative director, told the outlet. “We were wrong.”

“I am glad to see such a strong young man take action for the basic rights as [his] classmates,” Amanda Ranochak, a Bucks County Technical High School alumna, told The Mighty in an email. “I only hope this strength will carry [him] on for the rest of [his] time in high school and beyond. Many of us on the sidelines are cheering for [him].”

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My Google Results for 'Muscular Dystrophy' Didn't Tell Me This

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On September 8, 2013, I was admitted into the hospital and prepped for a C-section the next day. I was so excited to hold my little girl in my arms after a 41-week wait. On September 9, at 8:40 a.m., I heard my baby’s cry. She was wrapped in a towel and put next to me while I got stitched. I got to kiss her little forehead and examine her beautiful tiny features. Then she was taken away for what I was told was a brief doctor check up. But hours passed, and she wasn’t brought back to me. I was informed my baby was floppy, and so she was placed in the NICU.

My mind went blank. I had no idea what “floppy” meant. I couldn’t think of the questions to ask. My brain turned off. I was told there are many causes for floppiness. As the doctor went on, I tuned out. All I knew was that my heart was aching.

When she was 12 months old, she underwent a muscle biopsy, and we finally had a diagnosis: congenital muscular dystrophy.

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If I knew then what I know now, maybe my heart wouldn’t have hurt so much the day I heared “floppy.” Maybe I wouldn’t have resorted to Google as soon as the doctor left. Maybe I wouldn’t have broken down because the Google results were so scary and overwhelming. If I could go back to that day, I would tell myself so many things.

First, that I should not worry about teaching my baby how to adapt to a different kind of life; she would be my teacher. My daughter has shown me how much I took for granted. She’s taught me how to take a step back and slow down and by doing that, I’ve learned how to enjoy the small things. I know people always say, “it’s all about the little things,” but I’m not sure everyone who uses that phrase fully understands it. It means to experience joy every single time an event occurs. Every single time my daughter sits in swing, I feel overjoyed. Every single time she places the rings around the cone, I feel like jumping up and down. It’s not just the first time she achieves something — it’s every time.

I would tell myself is that different is just different. Different is not bad. I was so worried about how my daughter would ever be able to fit in. Now, I actually feel ashamed of myself for ever wanting that. I was worried about her being mocked or bullied at school. Now I know that it’s up to me to raise a confident girl who knows how to stand up for herself. It’s not her muscular dystrophy that may be the source of her disability; it’s the way she’s brought up, the way she thinks, the way she speaks, the way she sees herself.

Over the past year, I’ve come to learn that when something is taken away, something is given instead. That would be the third thing I would have told myself. My daughter may have not reached the age appropriate physical milestones but mentally she could outrun any toddler! She started communicating just before 10 months, by 12 months she was able to recognize and complete familiar nursery rhymes and had a vocabulary of about 15 words. She is now speaking using two word sentences, expressing some emotions (mainly sleepy, mad and hungry) and even counting! I can’t deny the fact that my eyes well up whenever I see a toddler taking his or her first steps but I am a firm believer in miracles. Her improvements are phenomenal to me. As she grows and reaches milestones I discover just how strong, determined and persistent she is, and that on its own is sufficient to help her achieve whatever she wants.

My little warrior princess has shown me the true meaning of strength despite all her physical weakness.

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Magical Photo Series Brings Dreams to Life for Boy With Muscular Dystrophy

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Luka, a 12-year-old boy with muscular dystrophy, only had one small wish: to see himself engage in some of the physical activities his condition makes him unable to perform. Thanks to the help of a particularly clever photographer, his wish has come true.

Luka can only move his fingers, which allow him to control his electric wheelchair and express his imagination through drawings. Matej Peljhan, a photographer and clinical psychologist from Vipava Valley, Slovenia, found a way to bring those drawings to life.

Photo: Matej Peljhan

In a photo series titled, “Le Petit Prince” (The Little Prince), Luka is placed on a set of ordinary scenes where he skateboards, plays basketball, walks up stairs and more. He’s positioned on the ground on top of various tarps and props that give the illusion he’s moving.

While Pelihan is responsible for bringing the boy’s dreams to life, he says it’s Luka who’s the real star.

“[Luka] is well aware of his fate but he doesn’t give in, either. He wants neither pity nor empathy but wants to stay positive and focused on the things in his life he can (still) do,” the photographer wrote in a press release. “He approaches all other activities he is… unable to perform in his own, witty way. Sometimes with the help of his imagination and virtual worlds where his creativity dashes to the sky and makes him forget his physical limitations and bonds.”

You can view the rest of the photos in “Le Petit Prince” below or at Pelihan’s blog here.
  Photo: Matej Peljhan

Photo: Matej Peljhan

Photo: Matej Peljhan

All photos courtesy of Matej Peljhan.

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Department Store Ads Feature Models With Disabilities

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Nordstrom is on a mission to have its ads reflect its shoppers. That means including people of different colors, races, ages and abilities. In its July catalog, the department store features models with and without disabilities wearing its 2014 fall fashion line.

This year, WDTN reports that four models with disabilities appear in Nordstrom ads: Jillian Mercado, who has muscular dystrophy; Alex Minsky, who lost his leg while serving in Afghanistan; Shaholly Ayers, who was born without her right arm below her elbow; and Heather Taguchi, a 7-year old girl with Down syndrome.

Meg O’Connell, a partner at consulting firm Global Disability Inclusion, told The Associated Press that Nordstrom “is a leader in this space and has been a long-standing supporter of disability inclusion not only in their advertising but also in employment and accessibility in their stores.”

Take a look at this year’s ads:

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College Football Team Concocts Special Play So Fans With Muscular Dystrophy Can Join In

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Matt DeRiggi, 11, and Danny Garofalo, 16, are big-time Rutgers University football fans. In April, the two young men with Duchenne muscular dystrophy (DMD) got to do more than watch from the sidelines. 

The video below of a spring practice shows Matt and Danny executing a play on the field with RU’s team. A celebration breaks out afterward.

“[Danny] loved it,” his father, Dan, told NJ.com. “That’s what makes it all worth it. As small as something like that seems, it really is a big difference.”

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The Short Bus Stops At My House

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via Laura Hertzog

It’s funny how the length of the bus you ride has the ability to define you as a person. Personally, I rode the regular-sized bus, the one the “normal” students rode to school. However, there was another bus that happened to stop at my house every weekday morning. The short bus, “the retard racer,” the bus that was transportation for my brother. Yes, my brother rode the short bus and will forever be the root of some kid’s immature joke. Or even worse the root of some adult’s joke. My brother is defined by his transportation of getting to school. They look past his ability to smile while making his bed every morning, or him surviving five open heart surgeries before the age of 5, or his ability to say “Luve you all.” It’s all looked past because of society’s standards of perfection.

Society has its stereotype of perfection for high school students. And let me tell you, the qualities of Down syndrome do not match our standards of perfection. Slurred speech, trouble writing, slowed motor skills, noticeable scars are the blunt indicators of the imperfections my brother has that society tells him and our family. His cognitive abilities will never meet education standards. I can remember the day my mom told me my brother did not meet the minimum of the bottom 2 percent on a standardized test. The anger stays with me today. The test didn’t show how far he has progressed from his starting point. It simply just related him to his other peers. He will always need to be in special education, he will always need a para helping him through the school day.

This may be how my brother is viewed in society, but I can tell you this is far from how I view my brother. David may be 17 months younger than me, but I view him as a role model, someone to impersonate. As I wake up in the morning, worried about if I will have enough time to put on makeup, and what the cafeteria is serving for breakfast, and how hard practice is going to be, and am I going to have someone to sit with at dinner tonight, and how I’m going to have to read 60 pages and make sure I keep up on social media; not one of those things come as a concern to David. There is something beautiful about his innocence. His worries in life are so minor compared to the average person. His worries consist of grabbing his two favorite toys to bring with to school, making sure he brushes his teeth in the morning and making sure the channel is tuned to the evening news at six. It’s humbling to observe.

I didn’t ask for my brother to have Down syndrome, nor did my parents, nor did my brother. However, I know we can all agree David is the reason our family is so strong. It’s the reason my mother fights to uphold human dignity every day. It’s the reason for my father’s compassion. It’s my reason for counting my blessings at night. It’s the reason for my sister’s generosity. Down syndrome may have put some road blocks in the way, may have caused some eccentric looks from strangers in the crowd, but ultimately Down syndrome has brought my family joy and has redefined perfection for each one of us.

And the short bus stopping at my house was the greatest blessing.

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