Brittany Adler could have been angry when she was seemingly ignored at a restaurant in Miami, Fla. She could have caused a scene when an employee behind the register gave her a funny look and walked away from the counter instead of making an effort to understand her while she was placing her order. She could have flipped out because that same employee had just taken her friend’s order but seemed disinterested in serving a person with a disability or finding someone who would. But instead, Adler remained calm, went somewhere else to eat and wrote a polite but powerfully-worded letter to the employee. Kindness and education kills negativity, she thinks.
Adler, 24, has dystonia, a neurological movement disorder that causes her muscles to involuntarily contract, affecting her speech. She told The Mighty in an email that she’d like to keep the restaurant’s name out of the media because she doesn’t see a benefit from throwing its employees under the bus. What she wants in the media is her response to the incident — because she thinks it can teach a lot of people an important lesson.
Her letter reads:
Hi, my name is Brittany Adler. I am 24 years old. I graduated with a Bachelors of Science in Exercise Science and Heath Science. I plan on getting my Doctorate of Physical Therapy. I also happen to have Dystonia, a condition that affects my muscle tone and speech. Just because I have this disability doesn’t mean I should be disrespected. It is a good thing that I am a strong individual otherwise, I would have been devastated. With that being said, everyone, including people with disabilities, should be respected equally… even though it may be harder to understand them. You should never give up on people. Everyone has something to say! Sincerely, Brittany
Adler brought the note back to the original restaurant and watched as its employees took turns reading it. They were all apologetic, Adler said, and one manager tearfully approached her to talk about his own daughter who has a disability.
Carly Greenberg, who was with Adler when the first incident occurred, told The Mighty she’s always revered her friend’s patience.
“Brittany believes that if everyone is as patient with her as she is with them, they will understand her,” Greenberg said.
“This is not disability awareness but human awareness,” Adler told The Mighty. “Just like no two fingerprints are the same, no two individuals are the same. Each one of us is special and unique. We each have something to offer one another. If all of us were the same, the world would be a boring place.”
Adler isn’t letting the incident weigh her down. She’s used to people staring at her and asking about her condition. She’d rather answer questions than let people make their own judgments. Today, she’s busy preparing to attend D’Youville College in Buffalo, N.Y., this June to study physical therapy.
“Dream big. Never give up,” she told The Mighty. “Don’t judge. Accept all people. Be the best you can be. Inspire.”
With one month until graduation, 20-year-old Dane Porter made his drumming debut. And it was percussion perfection.
The senior, who has Down syndrome, was invited to play with the Waxahachie High School band at a pep rally in April for a Special Olympics meet. Watch that performance below to witness some serious joy.
“Dane has taught me a lot over the past two decades,” Porter’s friend wrote on YouTube, “but one of the biggest things is that if you have someone in your life that isn’t capable of performing at the same level as the experts, we should still find ways for them to participate and be involved in the things they love.”
Today I had a big one – one of those ugly cries where what happened is worth crying about, but it’s almost like you’ve bottled up months’ worth, and this one thing sets ‘er all off.
Today a 5-year-old made me cry. Keep in mind Pip, my younger daughter, had her eye patch on, and I was uber sensitive after a discouraging eye doc appointment. But still, a 5-year-old made me cry.
The little girl, as annoying and taunting as her words were, was just being a little girl. But the little scene it created at daycare definitely got my mind a thinking to what may happen in years to come – what may happen to Pip when I’m not there – what may happen when Noal, her big brother, isn’t around to step in. It all made me sad. Really sad.
But I’m so thankful for Noal in his simple yet touching approach. Oh, what I am learning from these hooligans.
Whenever I pick Noal up after 4:30ish there is a real mix-match of kiddos left over in one room waiting for their parents who work late.
I always try and peek my head in to “spy” on Noal. He is usually leading the pack in some form or another, even if the kids are 4 or 5 years old. Today he was at the back of the room telling one little boy who was trying to help him with a puzzle that the piece he had was “too big, that’s too big” – his new favorite saying to everything that doesn’t seem to work or that he doesn’t want. “You want eggs for dinner, Noal?” “No mum, that’s too big.” “OK, buddy…”
Normally he sees me right away and runs over screaming, “Mumma!” and proudly shows off his “Pippy.” Today, however, this 5-year-old little girl met us at the door, aggressively grabbed at Pip’s eye patch & said, “That baby is broken. Look at her, she’s broken,” then pointed at Pip’s eye, turned to her little friend and said, “Gross, gross baby.”
She wouldn’t stop saying it, and before I could calmly explain or internalize “broken” or “gross” too much, my little tank of a man came running over, stepped in front of this little girl, put both hands on Pip’s cheeks, kissed her & proudly said, “She’s OK, she’s my sista” and then put her little head into his chest and started patting her back.
Hello, tears, how are you? So glad you kept ‘er in till we hit the van. Ice cream for our hero, Noal, for dinner? I think so…
Madeline Long is a 10 year old girl on the autism spectrum. She has become a minor star among people who watch her weekly “Happy Monday” videos, as these fans have been taken in by the sweet charisma that she has for life. Maddie greets people at the start of the week with the phrase, “Happy Monday.” I’m sure most of you are wondering, And what is so great about the start of the week? The answer is pretty simple. When you are someone who craves a schedule as much as Maddie does, you are confused by the lack of structure that a weekend brings and love nothing more than going back to the regimented life that school provides.
How would I describe Maddie? She’s manic in her energy levels. Her attention span is very limited. Because of these things her interests in life are active, be it basketball, swimming or pretend play. Those of you that think most kids on the spectrum are like zombies sitting in front of the TV — well spend a day with Maddie and that notion of yours will disappear. Here’s another thing that might surprise you. She’s very much a people person, as long as they are adult people who facilitate helping her do the things she wants to do. She rarely connects with peers because despite her sharing the same chronological age, her developmental age is more like a 4-year-old, so her play reflects that.
I give you this background about Maddie so you can understand how rare it is for her to display the calm nature she offers up in the video below. I have seen Maddie be this way very few times, and it’s always been when she is around another person with a developmental delay that is more global in nature than her own. She has no “Rain Man” savant-like gifts, but Maddie does have an instinct to go inside herself and be the calm vessel that the person she is with needs at that point. As much as I would like to have someone to help me beat the Vegas house at blackjack, I wouldn’t trade it for the sensitive trait my girl has in dealing with people with bigger challenges than she even faces.
The other person in this video is 11-year-old Matthew. Besides being on the spectrum, Matthew was born with tuberous sclerosis. The very non-medical description is that he has non-malignant tumors that can pop up all over. When he was in-utero he had one of these tumors in his heart. He has battled way more than what you and I have had to do to survive in life. Don’t be fooled by his sweet smile, this little guy is 100 percent American tough guy. Matthew would have the right to call Chuck Norris a wuss.
Maddie and Matthew met through Special Olympics basketball. On the court Maddie is like a lot of NBA players, as her focus wavers when she is on defense, but she had a successful season as she got through the noise and distractions that in the past often had her emotionally unable to stay on the hardwood. Basketball was newer to Matthew and he struggled most of the year to even take his hands off his ears. The whole thing often just seemed too much for him, but that is one of many of the great parts about the Special Olympics. No judgments. I’m not a big fan of cliches, but I do truly believe that so much of life is just showing up and my man Matthew did, despite how tough it often was for him.
At the end of the season, Matthew’s wonderful parents invited the families of the teams to a celebration party at their house. When you have a child on the spectrum you don’t get invited to too many parties and you aren’t very likely to attend anyway, as the atmosphere isn’t generally conducive for the challenges that are always at hand. This was a different type of party, as the vibe was perfect for all the kids. One player was absent, though — Matthew. He was holed up in his room the whole time. At this point I should mention that the one teammate that I had noticed during practice and games who Matthew would take his hands off his ears for was Maddie. He had even hugged her a couple of times. Knowing this I mentioned to Maddie that we should go into Matthew’s room and see if we could get him to join the rest of us at the party. The video below is what happened when we did this.
We wrote about Sean Bogart, a triathlete with Down syndrome, a few weeks ago. Bogart, 28, is competing in the Special Olympics in New Jersey this June. He’s also the star of his aunt and uncle’s upcoming documentary, “Sean So Far.”
In the newly released excerpt below, Bogart talks about self-respect, using the “R” word and what it means to be true to yourself. As someone who has faced a stigma surrounding disability his whole life, his words are especially powerful.
It’s a 2-year-old story. A community rallies around a neighbor with amyotrophic lateral sclerosis (ALS), more commonly known as “Lou Gehrig’s Disease.” Six swimmers take on the English Channel to raise money and ALS awareness in his honor. One of those six is diagnosed with stage 2 breast cancer four months before that swim but completes the challenge, anyway. A world record is broken.
It’s a 2-year-old story. But its characters aren’t finished telling it.
In 2008, when doctors told Bob Schoeni, a research professor at the University of Michigan, that they were 99 percent sure he had ALS, the father of two sat defeated. He figured he had two or three years to live before the debilitating disease would take him from his wife of 18 years, Gretchen Spreitzer, and their 8- and 10-year-old daughters.
“Devastating,” Schoeni, now 50, recalls. “Just devastating.”
He realized he had some reassessing to do — how would he live his now certainly shorter life? What were his goals and aspirations? Would he and his wife go after a luxurious, world-wide bucket list? Would he try to pack decades of experiences into a shrinking timetable? At one point, the answer became clear to him: He loved the life he already had. That bucket list was being marked off by family dinners and fulfilling work and afternoons with his wife. If ALS’s aggressive symptoms were going to soon start taking their toll on him, he’d spend the remaining time living out his already perfect bucket list — researching and teaching, coaching his daughter’s youth field hockey team, and spending time with his family.
How would he live his now certainly shorter life? Exactly as he had been.
“I think it’s healthy, wonderful even, for us to think about how we might choose to live if our time here is shorter than expected,” Schoeni says now. “I was fortunate to already be living the life I wanted.”
“An important piece of all this is to feel like every day, what you’re doing brings joy and meaning in your life to those around you,” Spreitzer adds. “Bob certainly takes a lot more time these days to listen and make connections with people on a day-to-day basis.”
Schoeni and his family were already beloved in their neighborhood when they got the diagnosis. Proof of this were the neighbors who, less than six weeks later, approached them with an idea: they wanted to start a nonprofit — Ann Arbor Active Against ALS (A2A3)– to raise funds to find effective treatments and ultimately a cure for ALS.
“We’re actually not involved in the governance of the nonprofit. I think they did that on purpose, as if not to burden us with having to make decisions or investing too much time,” Spreitzer explains. “Sometimes we feel uneasy about it, that they’re devoting so much time of their lives into doing these activities for us. But I can’t tell you the number of times people have said genuinely, ‘We need this almost as much as you need it. It’s been a privilege to be a part of something bigger than ourselves.'”
From A2A3 is where that 2-year-old story began, really. Because one of its board members, Amanda Mercer, a former swimmer at Michigan State University, one day got it in her head to form a relay team and swim the English Channel to raise $100,000 for ALS research.
“We’d been thinking about doing the swim for a little bit, but no one was super excited about it,” Mercer, now 42, recalls. “Then it hit me. We needed to do this swim for Bob. It suddenly took on a whole different dimension that had so much more meaning.”
“I kind of thought she was joking at first,” Schoeni recalls. “Over time it became clear to me that when Amanda sets her mind to something, it gets done. This was going to happen.”
For a year, Mercer and five other swimmers trained. But in March 2012, four months away from the race, she found she was facing a larger, more terrifying challenge.
“That word — ‘cancer.’ You hear it, and it just scares you. The unknown scares you,” Mercer says. She was tempted to surrender to self-pity. Then, she stopped herself.
“I had to flip that perspective around because it wasn’t going to do me any good,” Mercer says. She went to her first doctor’s appointment with a calendar and a plan. She’d have a lumpectomy and begin her chemotherapy. She’d swim the Channel, come home and continue her radiation. Doctors told her they didn’t think she’d be able to make the swim — she’d be too tired from treatments. Mercer shook them off. “I was gonna swim that Channel,” she says.
When Speitzer found out about Mercer’s diagnosis, she called her neighbor up.
“I just can’t believe the timing in all of this,” Speitzer said, assuming Mercer would have to surrender her spot on the relay team. “It’s all so ironic.”
“Isn’t this actually the best timing?” Mercer replied. Speitzer was a little bit shocked.
“I was in the best shape of my life, and I had hope,” Mercer explains now. “I had hope that Bob didn’t have when he was diagnosed. And now I had this goal that I could focus on instead of my disease. If I was going to get cancer, that was the time to get it.”
“When we initially broke the record, for some reason I wanted it to feel bigger,” Mercer recalls. “It wasn’t until weeks later that I realized it wasn’t about the record at all. It was about hopefully making a difference in Bob’s life and in the lives of people with ALS. It was about giving them hope.”
When Mercer returned home to finish her radiation, her eyes began to bother her. As a precaution, her optometrist sent her to an ophthalmic oncologist who suggested a cat scan, which later revealed the lining of an aneurism. They scheduled Mercer for a craniotomy, where they found that aneurism ready to burst. But they’d found and removed it just in time.
“In a strange twist of fate, breast cancer saved my life,” Mercer says. Today, she has a clean bill of health.
It’s been two years since that swim, but Schoeni uses its memory to remind him that he and his family will always have support. He’s lucky, he says, because his symptoms have progressed slower than doctors anticipated. He’s learn to accept help — something he found difficult when first diagnosed.
“I live a quote, unquote, normal life,” he says. “I certainly can’t do things that I used to be able to do, but I can do things and have developed abilities that weren’t there before, too.”
Schoeni will always tell his story to anyone who asks, but he’s hesitant to compare himself to others with ALS — he doesn’t want to be mistaken for the voice of the disease or to generalize the experience of having it.
“But I believe in openness,” he says. “If others can learn from my situation in some way, I see that as a good thing.”
“I guess we feel like if our story can help give others a sense of hope when they’re in difficult situations, then it’s worth sharing,” Spreitzer adds. “It’s empowering. It’s about facing challenges and helping others. That makes it worth telling.”
Watch “One Step Ahead” below. These 28 minutes are worth your time.