Megan Zahneis

@megan-zahneis | staff
Megan Zahneis is a first-year journalism student at Miami University in Oxford, Ohio, pursuing her passion for writing, advocacy, awareness and public speaking. She hopes to write a memoir to share her story of living with a very rare neurological disorder and effect positive change in others’ lives. In addition to her work writing for Major League Baseball and her school newspaper, Megan is a founding member of her school’s Students with Disabilities Advisory Council and a senior staff member at the Ohio Youth Leadership Forum for high school students with disabilities. Visit her website at meganzahneis.com.

Room For Joy Gives Bedroom Makeovers to Kids with Chronic Illnesses

Growing up, Tory Smock saw her bedroom as a sanctuary, a needed respite from hospital visits to correct her scoliosis. Now an interior designer, Smock spends her time redesigning bedrooms for children with chronic illnesses. To facilitate these makeovers, Smock created Room For Joy, a nonprofit organization in Mesa, Ariz., that puts together creative and medically appropriate bedrooms for kids with medical challenges. “Our goal is to go above and beyond the child’s expectations and to not just put some paint on the wall and change the bed coverings,” Smock told The Mighty. “We want them to feel like they have been transported to a magical place.” And they do it all in a single weekend. Smock and her team work with child life specialists at Phoenix Children’s Hospital, Cardon Children’s Hospital and Banner Thunderbird Medical Center to identify children in the Phoenix Valley area who are a good fit for a room renovation. Smock then meets with the children and their families to get to know them before scheduling a weekend for the makeover to take place. This past weekend, Smock and her team renovated the bedroom of 17-year-old Shonalisa, who was born with a condition called OEIS syndrome. Due to her condition, Shonalisa was born without a bladder and has developmental delays. The theme for Shonalisa’s room was inspired by her love of the Disney movie “Cars,” and the character Lightning McQueen. Shonalisa’s bedroom is the 44th makeover Room For Joy has completed since its inception in December 2005 . The cost of the makeovers — and the mini-vacations Smock sends families on while the renovation takes place — are all underwritten by donors. After renovating her own daughter’s bedroom, Smock know how healing these makeovers can be. According to Smock, her daughter’s new bedroom helped her get through a major procedure for scoliosis. “Being able to understand the importance of a healing environment from both the child’s as well as the parent’s perspective has given me a unique ability to relate to the children and their families in a special way,” she said.

Parents Use Pinterest to Make Their Daughter a Wheelchair for $100

Kimberly Moore wanted to find a way to help her 1-year-old daughter, Evelyn, get around. After being diagnosed with neuroblastoma at four months old, Evelyn became paralyzed from the arms down. Doctors told her parents the toddler would likely pull herself with her arms in an “army crawl” until age 2, at which time she would have grown enough to use a wheelchair. But Moore, of Alberta, Canada, didn’t like that answer, so she turned to Pinterest for a solution. What she found was a DIY wheelchair fashioned from a Bumbo floor seat. Moore enlisted her husband Brad to help build their own version of the Pinterest chair for Evelyn. It took Brad an evening to attach a secondhand Bumbo seat to a cutting board, and then rig the contraption with casters and small wheels. Just like that, Evelyn was tooling around in her new wheels – learning how to move backwards, mastering maneuvering forward and then turning corners. “She’s pretty fearless,” Moore told ABC News. “Now we have a speed bump in our living room because she goes that fast.” Moore added that the makeshift wheelchair, which Evelyn has been using for about seven months, gives her daughter the same freedom and mobility as other kids her age. “Her true person comes out when she’s in that chair,” Moore told ABC News. “She [now] has the same interactions as any other child would, being at eye level and exploring the world on the ground… That’s what she is able to do in moving around. It’s pretty exciting.” Evelyn’s oncologist, Bev Wilson of Stollery Children’s Hospital, told Canada’s CTV News that she’d never seen anything like it. “It’s been one of the most powerful stories I’ve had to deal with in 25 years of being in this business,” Wilson said. To top it off, Evelyn has been in remission for three months, following eight weeks of chemotherapy sessions. “She’s been through a lot and she’s just trying to get back to what normal looks like,” her mom said.

Portrait of a Soul Pair Artists With Kids With Craniofacial Conditions

Lee and Sue Schaefer, by their own admission, knew nothing about art. So the Cincinnati couple might not have been obvious choices to start a nonprofit organization that handpicks portrait artists, but that’s exactly what they did. More specifically, the Schaefers founded Portrait of a Soul, which pairs children who have craniofacial conditions with professional artists who paint their portraits in the hopes of providing emotional healing and a self-esteem boost. “We believe having their portraits painted makes the children feel exceptional and loved,” Sue Schaefer told The Mighty. Lee Schaefer got the idea two years ago from a YouTube video he found about a similar project conducted at the Children’s Hospital of Philadelphia, called Face to Face, that studied the psychological effects of portraits on children with craniofacial differences. He and Sue liked the idea so much that they drove from Cincinnati to Philadelphia in June 2014 to visit the Face to Face studio — and decided on their way back to implement something similar at home. Just one year later, in June 2015, Portrait of a Soul hosted its first unveiling ceremony, featuring the likenesses of 12 subjects, ranging from age 4 to 24, who were referred to the program by Cincinnati Children’s Hospital. Each artist, handpicked by the Schaefers to be paired with a family, worked to portray the kids through a six-month process of meetings, photographs, sketches, and sittings. One of those subjects was Logan Brinson. Logan’s life-size portrait, by Cincinnati-based Evan Hildebrandt, depicts him seated behind an American flag backdrop, cradling a guitar. He’s clad in a classic gold satin jacket and sporting a pompadour, showcasing two of his passions: Elvis Presley and America. Mighty contributor Rene Brinson calls the work a quintessential representation of her son, who was born with an undiagnosed genetic condition. She said the portrait took Hildebrandt between 80 and 100 hours to create. “When the portrait was unveiled, everyone was stunned,” Brinson said. “It looked like a photograph at first. It was so detailed. Logan kept saying over and over how much he loved it.” Now, the painting holds extra meaning for Logan’s loved ones. The 19-year-old passed away in April after complications from the flu. Hildebrandt, whom Logan had remained close with after the portrait’s completion, served as one of his pallbearers. Now, Logan’s portrait hangs in the Brinson home, and Rene calls it one of her most prized possessions. “Because of the energy that Evan [Hildebrandt] put into it, it feels alive,” Brinson told The Mighty. “It is such a perfect representation of Logan and his spirit that it’s like having him with me. I absolutely love it.” Lee and Sue Schaefer hope to expand the program, having already commissioned four more portraits through the local Shriners Hospital chapter. See below for more paintings from Portrait of a Soul, and visit their website to view the full gallery.

May We Help Creates Assistive Devices for People With Disabilities

A switch-operated TV remote, a tool to turn the pages of a book, a steering device to help a girl with limited muscle strength operate a wheelchair, bars that allow a boy to sit up by himself at the dinner table, a machine that swings a baseball bat, a modular stroller, and even remote-controlled Super Soakers. They’re all devices that have been customized for individuals with disabilities by May We Help, an Ohio-based nonprofit whose volunteers design and create personalized assistive equipment. Other projects featured on the May We Help website include a rig designed to allow a woman with no hand movement to paint using her feet, custom steps that help a girl with spina bifida climb into bed, modified bicycle handlebars crafted for a man with limb differences, and a rocking sensory chair designed to help an 8-year-old boy on the autism spectrum concentrate and relax. In its 10 years of existence, the organization, which bills its goal as “creating independence,” has produced about 600 such devices. Now with a team of 70 volunteers who come from all types of professional backgrounds – including engineers, industrial designers, machinists, seamstresses and therapists – May We Help aims to provide solutions that allow those with disabilities new ways to engage with the world around them. “Our projects give people with disabilities hope and, in many cases, independence for at least one small portion of their complicated lives,” Bill Sand, one of May We Help’s co-founders, told The Mighty. Sand, a engineer with 40 years of work experience, joined with two others to form May We Help, which officially gained nonprofit status a few years ago. Thanks to grants and individual donors, the devices come free of charge to the recipients, who apply for consideration through the May We Help website. If a project is accepted, a team of volunteers works with the recipient to design a suitable solution. Sand says recipients are frequently moved by the finished product. That’s especially true of parents, who often cannot find existing equipment that fits their child’s needs – or cannot afford to purchase it. “It gives them the hope and the joy that someone out there is listening to them,” Sand said. “Many times just talking to a parent about what they need shows the parent we care and that, to get something, they do not have to jump through hoops, fill out forms and deal with bureaucracy.” While May We Help was founded in Cincinnati, its staff shipped projects to 20 states in 2015. Sand hopes the organization, which recently expanded to include a Columbus chapter, will spread nationally and perhaps even worldwide. In the meantime, Sand said he’ll keep at work in the May We Help shop on one of the over 100 projects he’s had a hand in. More about May We Help, including information on volunteering and donating funds, can be found at maywehelp.org.

George Augstell, Man With Down Syndrome, Opens Uncle Bill’s Coffee

When William B. Gee Sr., died of cancer in 2013 at age 47, his nephew wanted to honor his memory. George Augstell, 28, who has Down syndrome, decided to combine the legacy of his uncle with his own lifelong dream of opening a coffee shop, stemming from volunteer work in food service and a love for meeting new people. And so Uncle Bill’s Coffee Stop was born. Located in the lobby of the Golisano Center for Community Health in Niagara Falls, New York, the coffee stop opened recently with Augstell as owner and operator. A partnership between Niagara Falls Memorial Medical Center and Rivershore Inc., the coffee stop got its start when Augstell, a longtime Memorial volunteer, told the hospital’s CEO, Joseph Ruffalo, about his idea. Ruffalo was all in, telling Buffalo News George’s business plan “made all the sense in the world” for the Golisano facility, which offers services for adults with special needs. And now, Augstell and a family friend who was hired as his employee serve snacks, pastries, soup, and, of course, coffee to Golisano employees and visitors, clad in polo shirts bearing the Uncle Bill’s logo. Augstell, who’s gotten attention from several media outlets, makes a point of calling Uncle Bill’s a coffee stop, not a coffee shop. He wants people to stop in for a visit — and that they have. Uncle Bill’s was also recently recognized by a local senator. Susan Goodman, Governmental Affairs Director at the National Down Syndrome Congress, said Augstell is showing others the possibilities for those with Down syndrome. “Augstell is an example of what we want for all people with Down syndrome — the opportunity to live a life he chooses with the appropriate support — including real employment on a meaningful job with a chance to achieve the American dream,” Goodman told The Mighty. And as a now successful business owner, Augstell had a few words of wisdom for others with Down syndrome. “Be yourself and to not be afraid of failure or anything else,” Augstell told The Mighty. “Also do not be afraid to pursue your dreams and never give up. I think it’s important in life to have a good job that you love.” At that, Augstell has succeeded. Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today! Available for purchase on Amazon and iTunes .

'Born This Way' Set to Air Season Two

The critically acclaimed docu-series “Born This Way“, which follows the lives of seven South Californians with Down syndrome, is set to air its second season Tuesday, July 26, on A&E, after a debut Emmy-nominated season. Laura Korkoian, co-executive producer at Bunim-Murray Productions, gave The Mighty an exclusive look into what viewers can expect to see in season two: This season the cast continues to pursue their goals and dreams, while striving for greater independence. Megan is offered an opportunity in Los Angeles that reactivates her desire and dream to live in California, with or without her mom.Steven is putting himself out there in the dating world, Sean goes on a few blind dates and may or may not meet someone special, Elena pursues her passion for poetry, Rachel continues to blossom and put herself out there in the world by taking risks and creating the life she wants to live. Cristina begins spending time following a new passion and learns how hard it is to balance relationship and commitments. John is offered a once-in-a-lifetime opportunity that tests him as an artist.Two cast members move in together to test what it will be like to live independently. The series, which is the first of its kind, enjoyed a successful six-episode run last winter that saw viewership rise 83 percent over its duration. In June, the Television Academy Honors hosted “Born This Way” as one of six shows “tackling complex issues and promoting social change.” Earlier this month, it was nominated for an Emmy for Outstanding Unstructured Reality Program. Two of its episodes also garnered nods for Outstanding Picture Editing for an Unstructured Reality Program. In a press release announcing the series had been renewed for a second season, executive producer Jonathan Murray cited the fledgling series as one of the greatest successes of his nearly 30-year TV career. “Over the course of my career, when I’ve been asked what show I was proudest of it was always ‘The Real World.’ Now there’s a contender to that title – it’s ‘Born This Way,’” Murray said in the release. “I am thrilled the series will return for a second season, and I want to acknowledge the invaluable support we have received from advocacy groups for the disabled, especially RespectAbility and Best Buddies International who have been tirelessly spreading the word.” In the same release, A&E Executive Vice President & Head of Programming, Elaine Frontain Bryant expressed gratitude for viewer support. “We have been overwhelmed and moved by the feedback we’ve received for ‘Born This Way’ from viewers, as well as people with disabilities and their family members,” Bryant said. “It’s rare to be able to present a show that changes the way we see the world; we believe ‘Born This Way’ is one of those shows.” The second season of “Born This Way” premieres on A&E on Tuesday, July 26 at 10 p.m. EST.

Disability Equality Index Rank Best Places for Disabled People to Work

Staffers at the American Association of People with Disabilities (AAPD) and the US Business Leadership Network (USBLN) have partnered to create the Disability Equality Index (DEI), a national inventory used to assess and benchmark businesses’ disability inclusion practices. Now in its second year, the DEI is recognizing 42 of the 83 companies that participated in 2016 with a 100 percent score and “Best Place to Work” honors. Among the top-ranking companies are Starbucks, AMC Theatres, Verizon, AT&T, Sprint, Delta, JPMorgan Chase, P&G, Comcast NBC Universal, HP, General Motors, Walmart, and American Airlines. A few of these businesses have made news in the past for their disability-friendly practices. Starbucks, for instance, just hired 10 deaf baristas at one of its stores in Kuala Lumpur. AMC, the second largest cinema chain in America, has led the way with sensory-friendly screenings since 2007. Helena Berger, president and CEO of AAPD, told The Mighty the survey may also guide people with disabilities and their loved ones on where to spend their money. “The DEI helps people with disabilities better target where there are greater employment opportunities within industry segments,” Berger added. “In addition, it shows which companies are actively engaged and working toward disability inclusion for employees, customers and suppliers.” Companies that choose to complete the DEI are evaluated on their responses to a wide-ranging survey, which asks weighted and non-weighted questions in four categories: Culture and Leadership, Enterprise-Wide Access, Employment Practices and Community Engagement and Support Services. While the DEI’s creators recognize that a survey can’t accurately capture the holistic experience of disability at a company, they say their inventory has produced concrete changes in several participating businesses, including formation of employee resource groups on disability and increased support from high-level executives. “We know that policies alone don’t always translate into inclusion,” Jill Houghton, executive director of USBLN, said. “The DEI provides a road map for advancing disability inclusion by enabling companies to see both strengths and areas of opportunity that exist across their organization, and provides a means to benchmark against their competitors and businesses as a whole.” And, at the end of the day, that’s what it’s all about, according to Houghton. [The DEI] is designed to promote and advance disability inclusion practices and policies within corporate America that lead to better employment outcomes for and inclusion of people with disabilities, as employees, customers and suppliers. When businesses include people with disabilities, everybody wins. See the full list of “best places to work” here. Are you a person with a disability who has worked at one of these places? What was your experience like? Tell us in the comments below. Image via Wiki Commons / Raysonho

Photographer Steph Smith Gives Free Photo Shoots to Special Needs Kids

It all started when Stephanie Smith read an article about a photographer who denied service to a potential client who has Down syndrome. As an office manager who’d taken up photography as a hobby, she decided to use her skills to offer a remedy. Smith gives away three photo shoots each month to children with special needs and their families. “99.9 percent of [parents] tell me how scared they are to reach out to photographers and put their children’s battles out for the world to see,” Smith told The Mighty. That’s a predicament Smith understands well. Her sister, Melissa, was diagnosed with transverse myelitis, a rare neurobiological disorder that left her paralyzed from the waist down, after beating cancer twice. And when Melissa’s story went viral and she received $450,000 in donations, her sister knew she wanted to give back somehow. “Between knowing the financial strains special needs families have, and wanting my 3-year-old to see, treat and love everyone equally, it brought me here,” Smith told The Mighty. Through Stephanie L. Smith Photography, based in Annapolis, Maryland, she’s completed 16 complimentary photo shoots. The only thing Smith asks in return from her subjects is a photo of the two of them together. Stephanie Smith poses with one of her subjects. Stephanie Smith and one of her subjects. Stephanie Smith hugs one of her photo subjects. After all, Smith said, she’s the one who benefits most from the exchange. “It means everything. It has taught me so much. I can’t put it into words,” Smith said. “[Taking these photos] has taught me patience, resilience, unconditional love, strength … the list goes on.” Eventually, Smith hopes to open her own studio space, where she can conduct indoor shoots and accommodate children whose conditions don’t allow them to be outdoors for long periods of time. And on Friday, she’ll head to Wisconsin — a trip funded by friends and supporters — to photograph 2-year-old Charlie, whose mother, Cori Salchert, takes in hospice children left in the foster system. Stephanie Smith poses with one of her subjects. Stephanie Smith hugs one of her photo subjects. For now, she’ll continue offering free photo shoots — and reaping the benefits: “What these families have given me does not even compare to the small gift I am giving them.”

Unarmed Caretaker of Young Man With Autism Shot by Police

Update : On June 17, 2019, Jonathan Aledda, the officer who shot at an autistic man but instead hit his caregiver Charles Kinsey in the leg in 2016, was convicted on a misdemeanor charge of culpable negligence for his actions. According to the Miami Herald, the jury declined to charge Aledda with two felony counts of attempted manslaughter charges, which would have carried much steeper penalties. An earlier trial in March 2019 ended in a hung jury on three charges, resulting in a mistrial, and June’s retrial. Aledda could face up to a year in prison. Kinsey is suing the city of Miami. The unarmed caretaker of a young adult on the autism spectrum was shot Monday by police in South Florida. Charles Kinsey, 47, was trying to retrieve the young man, who had wandered away from the assisted living facility where Kinsey works, and, according to reports, was blocking traffic. In a video released by Kinsey’s attorney, Napoleon Hilton, Kinsey can be seen lying on the pavement with his arms up, attempting to get the young man to do the same. The young man sits beside Kinsey, fidgeting with the white toy truck in his hands. “Rinaldo, please be still,” Kinsey says in the video. “Sit down, Rinaldo. Lay on your stomach.” Moments later, Kinsey is heard appealing to police officers, who stand with guns cocked about 30 feet away. “All he has is a toy truck in his hand. That’s all it is,” Kinsey is heard saying. “There is no need for guns.” Editor’s note: the following video contains screaming as well as images of Kinsey with officers after being shot. Shortly thereafter, Kinsey was shot in the leg by an officer. The incident was not captured on camera, but a second bystander video shows Kinsey and his patient being handcuffed, surrounded by officers. Kinsey’s attorney told reporters his client was made to lie on the pavement for 20 minutes before being transported to the hospital for treatment. “I was really more worried about [my patient] than myself,” Kinsey told local news station WSVN from his hospital bed. “I was thinking as long as I have my hands up … they’re not going to shoot me. This is what I’m thinking, they’re not going to shoot me. Wow, was I wrong.” Kinsey told WSVN the gunshot left him shocked. “I’m saying, ‘Sir, why did you shoot me?’ and his words to me, he said, ‘I don’t know,’” Kinsey told the station. In a press conference Thursday, police said officers on the scene were responding to a 911 call, made at 5:01 p.m., of an armed male suspect threatening suicide. The shooting officer, who has not been identified, has been placed on leave while the department and State Attorney investigate the case. North Miami police chief Gary Eugene, who was sworn in July 12, refused to answer questions at the press conference. In an email, Lori McIlwain, cofounder and chair of the board of the National Autism Association, told The Mighty: Everyone at NAA is devastated by the recent event in Florida. Mr. Kinsey was clearly attempting to protect an individual with autism, and was in need of assistance… Wandering (elopement) is a common occurrence in the autism community, and individuals with autism may be unable to respond to verbal commands. We often see cases where an individual with autism elopes from a group home. These individuals are in need of understanding, support, and assistance. She cited a photo that went viral in May, of an officer in Charlotte, North Carolina, consoling a teen with autism who had eloped from his high school, as a model of police involvement with autism. “Individuals in our community, and the caretakers trying to protect them, should have our assistance and support,” McIlwain told The Mighty. “We encourage law enforcement agencies to visit local group homes to meet these beautiful individuals and their caregivers.” UPDATE Thursday 7/22: The police officer who shot Charles Kinsey Monday was reportedly aiming for the young man with autism whom Kinsey was trying to escort back to the nearby MACtown Panther Group Homes facility, according to NPR. As Kinsey lay on the ground with his hands up, his patient sat nearby, holding a toy truck that was mistaken by both the 911 caller and police as a gun. Believing that Kinsey’s life was in danger, the officer, described as a 30-year-old Hispanic man, discharged his weapon. “Fearing for Mr. Kinsey’s life, the officer discharged his firearm, trying to save Mr. Kinsey’s life,” John Rivera, president of the Dade County Police Benevolent Association, told reporters. “And he missed, and accidentally struck Mr. Kinsey.” The officer said in a statement that he “did what he had to do”, and Rivera, of the local union, characterized the case as a misunderstanding, distinguishing it from other recent police-involved shootings of black men. “This is not a case of a rogue cop; this is not a case of police abuse,” Rivera said, according to NPR. “Listen, Mr. Kinsey did everything right. Let’s be clear about that. Mr. Kinsey did everything right.” According to NBC News, Kinsey was released from the hospital Thursday, the same day U.S. Attorney General Loretta Lynch indicated the Justice Department was working with local officials on the case.

McDonald's Surprises Boy With Autism With Happy Meal Toys

One Irish mother is calling her nonverbal son with autism “the happiest boy in Ireland” after receiving a surprise shipment in the mail. Nicole Duggan, 27, is mom to Riley, a 2-year-old who has a penchant for Angry Birds-themed Happy Meal toys from McDonald’s. So when Riley misplaced several of his favorite toys — and an hour-long search for them turned up empty — mother and son were both devastated. Duggan decided to email McDonald’s to ask if she could buy any extra of the toys for her son, but was pleasantly surprised by what happened next. The next morning, she and Riley woke up to a package from McDonald’s containing the burger chain’s entire Angry Birds toy collection. “He couldn’t believe his eyes when he saw them,” Duggan told The Mighty.   LOVELY GESTURE – We’re speaking to Cork mum Nicole who was overwhelmed by this lovely gesture from McDonald’s for her…Posted by Corks RedFM 104-106 on Wednesday, July 20, 2016  Duggan was so touched by the gesture that she reached out to local Cork radio station RedFM to share Riley’s story: Anyone who has a child with autism knows how hard it is for them to take to new toys and it is very rare for them to find something they love,” Duggan told the station. “To most people this would be a stupid delivery to get, for my little boy it was like Christmas morning!!! McDonald’s went above and beyond for my small man and I can’t thank them enough. For Riley, the gesture was especially meaningful, Duggan said. “Being nonverbal, he cannot get his feelings across, so he couldn’t tell me why he was upset and it just built up and he was so frustrated,” Duggan said of her son losing his toys. “It just shows how something so small can make such a difference to a child with autism.”