American Ninja Warrior Contestant Jimmy Choi Inspires Others with Parkinson’s Disease

Nancy DeVault

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May 17, 2018

American Ninja Warrior Contestant Jimmy Choi Inspires Others with Parkinson’s Disease

Jimmy Choi was diagnosed with Parkinson’s disease in 2003 at the age of 27. “The doctors told me that I would have about 15 good working years left, and that I should do whatever I could to prepare for my future,” he tells AmeriDisability Services. Well, now at that cautioned 15-year mark, Choi, a husband and father of two, continues to thrive both professionally, as a chief technology officer, and personally, as a marathoner and contestant on American Ninja Warrior (the NBC television program that challenges competitors to tackle physically demanding obstacle courses).

Parkinson’s disease is a central nervous system disorder affecting movement. According to Florida Hospital, Parkinson’s affects up to one million people in the U.S., including 20,000 in Central Florida alone, totaling more people than Lou Gehrig’s disease (ALS), muscular dystrophy and multiple sclerosis combined. When Choi’s symptoms first presented, including tremors, rigidity, fatigue and loss of balance, he attributed them to ordinary causes like work-related stress, exercise-induced soreness and general clumsiness. “Initially, I was so young. Parkinson’s is not the first thing you think of when you start experiencing health issues,” he explains. Even after receiving the diagnosis and relying on a walking cane, Choi remained in disbelief… until the day he defines as his “rock bottom.” He fell down the stairs in his home while holding his infant son in his arms. After seven years of denial, it was an overdue wake-up call to take control of his health.

To aid research, Choi began volunteering for Parkinson’s-focused clinical trials. He noticed physical activity was a vital component among all the trials. “For Parkinson’s, there things you must do,” proclaims Marti Miller, president of the Parkinson Association of Central Florida and caregiver to her husband, David, who has Parkinson’s. She says, “Educate yourself about the disease, take your medication (and on time), exercise, eat properly and socialize in order to live a long life with this disease.” These lifestyle changes were gradual for Choi ─but they worked! “I started walking around the block once with my family using my cane and, eventually, was stronger and more confident to go twice. Then, I could go without the cane. Every day I worked to build muscle memory and believe I was building neuropathways in my brain,” Choi says.

He found joy pushing his boundaries with a daily exercise routine. Over several years, Choi rebuilt strength and stamina, and excelled at three high-performance sports: running, cycling and obstacle course training with crossfit and calisthenics. Aside from the physical aspect, Choi explains that mental effort is a factor because his body requires modifications. “I drag my right leg, so I mentally tell myself to pull my knees up toward my chest and pick up my leg,” he says. When cycling, Choi favors his left side because of muscular tremors on his right. Last year, the now 42-year-old opened up to TV viewers about his physical limitations and consequential adjustments during his America Ninja Warrior appearance. He felt compelled to challenge himself, but to also compete on behalf of the Michael J. Fox Foundation to increase Parkinson’s awareness. “I said that taking that first step was the hardest thing anybody can do, but the rest of it then comes more easily,” he recalls of the taping. His obstacle run didn’t go as he hoped. However, American Ninja Warrior invited him to return for a second attempt (to air summer 2018), and Choi offered a new inspirational message: “Once you’ve taken that first step, it’s going to be hard and you might fall down… but you get backup and do it all over again!”

Jimmy Choi American Ninja Warrior Contestant with Parkinsons Disease

Now as an advocate, Choi empowers others with the disease. “We need to give our bodies a better chance of performing. It doesn’t matter what you’re faced with…if you make your body healthier, you are going to feel better,” he declares. In the spring, alongside physicians and researchers, Choi spoke at The Brain and Beyond Conference in Orlando, hosted by Florida Hospital and the Parkinson Association of Central Florida. “A conference like this gives young-onset or nearly diagnosed individuals access to people, networks and information,” says Choi. More than 500 patients and caregivers learned about the latest trends in managing symptoms and improving quality of life.

“Education is power and it is our goal to provide as much education to the community as we can,” says Anissa Mitchell, Parkinson’s outreach program manager at Florida Hospital. “Medication and surgical management of symptoms is just one way to battle Parkinson’s. Exercise is key to managing the disease as well. Jimmy is a prime example of how much exercise can benefit someone with Parkinson’s and he also proves that, despite starting years after the diagnosis, he was able to regain strength and physical fitness. You can fight back,” she affirms. At the conference, the Parkinson Association of Central Florida donated $250,000 to Florida Hospital to impact patients. Mitchell says the funds will develop a comprehensive movement disorder program within the Florida Hospital system complete with fellowship-trained movement disorder neurologists, mid-level practitioners (such as nurse practitioners or physician assistants), physical/occupational/speech therapists, social workers, neuropsychology/psychiatry experts and nutritional counselors.

Choi also honestly shares how Parkinson’s affects more than visible mobility skills, but understands that many solely associate the disease with tremors. “For example, your executive function in the brain starts to slow down. You lose your sense of smell, cholesterol levels drop and blood pressure lowers because anything that’s a muscle – and your heart is a muscle – can be affected by Parkinson’s. You can experience constipation because the intestines aren’t pushing normal,” Choi explains. “Parkinson’s is a complex disease,” Mitchell adds. “It’s not just about movement; it also impacts mood and emotions and, often, treatments only focus on movement problems. We are seeking to improve care in Central Florida so that it is more holistic and treats the whole person, including care partners because we know they are affected as well.”

Patients and caregivers can stay up-to-date on research and more at ParkinsonsNewsToday.com. For more information, visit ParkinsonCF.org and FloridaHospital.com/Parkinsons-Disease-pd.

Museum of disAbility History: An Inclusive Space of the Past, Present and Future

Education

Nancy DeVault

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April 27, 2018

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Museum of disAbility History: An Inclusive Space of the Past, Present and Future

Society has come a long way in terms of inclusion. Sadly, not too long ago, awareness and acceptance of all abilities was far from the norm. Located in Buffalo, New York, the Museum of disABILITY History is dedicated to preserving and recounting the trials and triumphs of disability rights and persons with disabilities. Twenty years ago, Dr. James M. Boles, the CEO of People Inc. (a nonprofit human services agency in Western New York) recognized that accounts of how people with mental and physical differences were once perceived and treated were not well-kept or accessible. Thus, he established the Museum of disABILITY History (ModH) with a mission to advance the understanding, acceptance and independence of people with disabilities. Today, more than 2,000 museum visitors per year appreciate the impactful exhibits, educational programs, film/speaker series and special events.

“We have a library in the basement and a good gallery space. We also have a theatre room where we show an introductory film and some exhibits,” Associate Vice President David Mack-Hardiman describes to AmeriDisability Services of the building which offers 8 permanent collections, 2 temporary collections and 11 traveling exhibits. “One of the issues with museums is that there’s only so much space to have things up. So traveling exhibits get shipped all over the country to allow the general population to see our exhibits because not everyone can come to the museum.”

Pieces of the Past

The ModH library is a one-of-a-kind archive with thousands of books, documents, medical essays, photographs, postcards and more, including the museum’s oldest piece: pages from a 1750s acts and laws document pertaining to “idiots, distracted, impotent and idle persons.” Yes, those are harsh descriptive words and some of the museum’s exhibits do present the crude realities of eugenics, institutions, dated treatments and more. The museum also owns straightjackets and other institution-used restraints, a collection of old-fashioned mobility gear (i.e. braces, wheelchairs), a modified sled used in the first Winter Paralympics and an Invacar, an adapted UK-made vehicle primarily used in the 60s and 70s by disabled veterans.

Photo: Invacar

“In 1995 as New York State prepared to close the Willard Psychiatric Center, more than 400 suitcases were discovered in the institution’s attic. Inside were photographs, letters, books and other mementos which tell dramatic stories of the individuals who lived there – their lives, their past, their history, ”Mack-Hardiman said. The findings inspired an exhibit titled The Lives They Left Behind: Suitcases from a State Hospital Attic. “One of our goals is to try to tell these stories because so many people were institutionalized at that time. We also try to help families who are looking for date of death and other information about institutionalized ancestors,” Mack-Hardiman explains. For the past ten years,the museum has also helped relatives through the restoration of institutional cemeteries. “We’ve connected with families who have been seeking some kind of closure. They’ve never really known where their ancestors were buried and we’ve helped them discover their final resting place,” he says. Restoration efforts were presented in an exhibit called Monument for the Forgotten.

In 1977, alongside a friend whose sibling had a disability, Mack-Hardiman took a summer job at Camp Cornplanter, the first residential camp for persons with disabilities in North America which operated from 1959 to 1984. He worked therefor six years and served as the Assistant Director of the camp in the early eighties. “The first day, I loved everything that I was doing and stayed in the field for 41 years,” Mack-Hardiman declares. When the camp went out of business, he worked to bring camp memorabilia to the museum and authored the book The Magic Fire: The Story of Camp Cornplanter, which is part of the museum’s library collection.

Cause Collaborations

In Celebration of Down Syndrome was one of ModH’s most successful showcases as of late. Created in partnership with Down Syndrome Parents Group of WNY, NYS Council on the Humanities and others, the exhibit explored “medical history, myths and facts, as well as success stories and popular culture.” Celebrity actors and advocates were featured, such as Lauren Potter, Christopher Burke, Jamie Brewer and model Madeline Stuart. It also included viewings of Kelly’s Hollywood, an inspirational documentary by actor/director Brian Donovan about his quest to fulfill the Hollywood dreams of his sister who has Down Syndrome.

ModH regularly hosts disability-related film screenings, expert talks and other special events, including frequent appearances by Engelic Everett. The author, who has Down Syndrome, penned a children’s book titled Olivia the Bully, which is the museum’s top-selling book. It tells the story of Olivia the Rabbit, a third-grader who transforms from a bully to a hero.

Mack-Hardiman says he especially values ModH’s partnership with the University of Buffalo. “We have people with disabilities teach the medical student classes and talk about how they’ve been treated on their own medical appointments versus how they want to be treated. You can see perceptions change right in front of your eyes,” he says. ModH also hosts onsite educational opportunities for various schools and children’s groups because, as Mack-Hardiman explains, “We are looking at acceptance and doing whatever we can to try and promote that in any way possible.” For more information or to view a plethora of digital resources, visit MuseumOfDisability.org.

The Beautiful Artistic Vision of a Blind Artist

Nancy DeVault

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April 19, 2018

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The Beautiful Artistic Vision of a Blind Artist

Texas-native John Bramblitt proclaims, “I think I could draw before I could walk;” but he never envisioned his art hobby would become a career. In fact, he was studying creative writing at the University of North Texas. Then, epileptic seizures impacted his brain’s ability to control vision and, by his mid-twenties, John was blind.

John faced depression as he adapted to life with a new disability; but, soon, realized his hands (via touch) could achieve what his eyes (via sight) previously did. “After I learned to navigate the house and getting to campus, I thought ‘if I can navigate a city, surely I can navigate a canvas.’” He started painting to work through his depression and to reconnect with loved ones by portraying his feelings. His reach, however, far exceeded his expectations. John’s art has now been sold in over 120 countries!

When gallery show opportunities first arose, John stayed mum about his disability. He simply wanted the art to be appreciated for what it was, rather than because of who created it (and how). It didn’t take long for raving media reviews to reveal his remarkable talent and impressive creative process. “The attention actually helped me heal and grow as a person and an artist because I was [then] contacted by various charities and nonprofits that wanted me to talk to their clients or do workshops,” John explains. “Through that, I met soldiers with PTSD, children with autism, adults with Alzheimer’s, people with epilepsy and other issues ─ and I felt at home. Even though what we were dealing with wasn’t the same, we understood each other on a deep level. It was wonderful for me to be around these people who just got me and I got them. It definitely pushed my art forward.”

Making Masterpieces

So, how does a blind artist navigate a canvas? John adds braille labels to paint tubes but, more importantly, his accuracy is accomplished from creating raised lines with each paint stroke. He figured out how to identify and control paint colors by mixing different mediums to achieve specific textures. “The mediums are the stuff in the paint that holds the pigment of the color. You can make the medium feel really thick or thin, or like oil or water.” Initially, it took John about a month to complete a painting but, now with his fine-tuned method, he’ll finish a piece in just a couple of days. “I also mix drying agents into my paint. I can actually draw a line and have it dry almost instantly,” he adds.

“John never ceases to amaze me. After having witnessed him paint for many years, I understand the process but it still baffles me that he can draw out his compositions so well. I feel blessed that he has been able to overcome this adversity and, more so, that he shows our [10-year-old] son on a daily basis that anything is possible,” says John’s wife, Jacqi, who is also an artist (focused on photography and design). Her sentiments are shared by many. The now 47-year-old painter’s life has even been featured in two short films, “Line of Sight” and “Bramblitt.” Despite his success, John remains humble and passionate, “My work is just about how I feel. And if people connect with it, then that is a huge gift!”

A Colorful Future

When John began painting, he describes the work as dull and geometric with muddy colors which he believes reflected his depression. As his life illuminated with restored and newfound happiness, he gravitated toward brighter colors, recounting, “Once my son was born, it was like color exploded in my life again.”

John jokingly declares, “Every painting that I work on is my favorite because it’s the process that I love… being in that moment!” So while he, of course, enjoys displaying work in galleries, John truly enjoys helping others discover the bright and joyful process of painting. He leads various lectures and multi-sensory workshops at art facilities, schools, nonprofits and beyond. Many budding artists are especially intrigued by his ‘Blindfold Painting’ sessions where John instructs participants on techniques that mimic his own manner. He’s slated to lead this and other classes this summer as an ‘artist-in-residence’ in Tulsa and Oklahoma City, and is also set to tackle some BIG canvases: two four-story murals in the Dallas art district.

Leaving a Legacy

While painting took the forefront, John never lost his love for writing. He penned a personal memoir, Shouting in the Dark, about his journey through vision loss, depression and finding artistic vision. “Reading and hearing stories from other people who were battling disability really helped me. I wanted to contribute to the dialogue,” he shares.“Now, I try to be a great advocate for disability too.” John’s actually discovered that many artists also face either physical or mental challenges. “Art is just a message, and people with disabilities have a lot to say,” he explains; adding that he’s pleased to notice an increase of acceptance and awareness, “People used to hide their disabilities and now I think it’s a great turning point for [disabled] artists and all people with disabilities.”

While his book was one of many professional highlights, his ultimate career objective naturally involves a canvas and paint. “I have a goal, before I die, to do a perfect painting ─ a painting that describes exactly what I’m feeling… and I’m still working on that,” John says. Visit Bramblitt.net to learn more about the life and works of John Bramblitt, explore workshops and to purchase paintings.

Photos:

Above: Artist John Bramblitt with painting, Lead Bull

Below left: Jeff Bridges

Below right: Melting in the Music

Perservering Through Paralysis

Health

Emily McDeed

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April 5, 2018

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Although neurological disorders seem rare, many people may find themselves dealing with one at some point in their lives. Car accidents, back-breaking falls, and even lifelong conditions can leave an individual with feelings of hopelessness because they can’t live the life they could have.

But that doesn’t mean all hope is lost. There are those who help individuals reach their goals regardless of their condition, and CORE (Center Of Recovery & Exercise) is an organization dedicated to that mission. After CORE’s founder, Matthew Davies, obtained a C6 spinal cord injury in 2005, he founded the organization in 2011 after experiencing the benefits of an intensive exercise routine. Thus, CORE’s team provides similar training programs for those with multiple sclerosis, transverse myelitis, Parkinson’s, stroke, and other neurological disorders.

CORE begins with an Individualized Training Session where they assess a client’s goals, exercise preferences, and current abilities to frame their exercise routine around those factors. Those who need to strengthen their core and improve their gait, for example, may benefit from doing exercises with an instructor or practicing walking patterns with equipment designed for those with their condition. Such equipment includes an Anti-Gravity Treadmill that allows a client to practice walking in a weightless environment, the Kine Assist device that walks with the user while supporting them at the hips, and the Lite Gait Support System that bears the weight of the user so they can practice gait training on a manual treadmill.

Those with paralysis have many options as well, including Aquatic Therapy in CORE’s enclosed swimming pool (with an underwater treadmill included!), the Uppertone device that lets C4-C5 quadriplegics do exercises independently, and the ReWalk Exoskeleton that enables paraplegics (T4 or lower) to walk again after going through 20-30 training sessions with CORE assistants. CORE also provides Occupational Therapy through their partners at Neuro Hub, where they help clients learn the fine motor skills for daily tasks in work, personal care, and driving with accommodations (after initial assessments).

Regardless of the routine or situation, CORE’s main mission is to build confidence, independence, and hope in a client who has not been able to find it in other organizations. When speaking with Malerie Murphy, the Executive Director, she said that clients should “never give up on [their] dreams and…surround themselves in a positive environment with people that want to help [them] fight to reach [their] health, exercise, and recovery goals.” She and her CORE team members are there to support individuals in achieving their best potential, whether it takes months or years to accomplish. Even though CORE doesn’t take insurance, clients can receive donations for their exercise program through CORE’s foundation website and the many sites listed there. The training facility is located in Altamonte Springs, Florida.

For those interested in volunteering, two opportunities are available. Students can apply for internships each semester to learn about the field with a mentor, while anyone can participate in CORE’s Rock Steady Boxing Program. Each week, boxing volunteers act as cornermen in the boxing ring to help those with Parkinson’s compete as a fun way to fight their symptoms. More information about these opportunities and exercise programs can be found at CORE’s facility website or by sending them an email through their contact form: https://coreflorida.com/contact-us/.

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Making a House a Home with the Echo & Google Mini

Tiffiny Carlson

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April 5, 2018

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Making a House a Home with the Echo & Google Mini

Say goodbye to the days of The Clapper. Home automation, technology that controls devices in the home hands-free, has been turned upside down and it’s been a windfall for the disability community. This windfall comes in the form of two beautiful names: The Echo and the Google Mini.

Before this technology arrived, home automation used to cost thousands of dollars. Now you can set up this tech in your home for less than $100. And if you need it to do more tasks, it only costs a few hundred more; not anywhere near thousands of dollars.

And the tasks people use their Amazon Echo ($99) and Google Minis ($49) to complete is life-changing. One of the most common tasks, other than controlling the TV, music and calls, is turning on the lights. Both the Echo and Mini can turn on the lights when used with smart switches/smart plugs (WiFi bulbs too). In fact, the entire home can be made ‘smart.’

The Echo has ‘Dots’ as well that you put throughout your home to expand it’s reach, and it even comes with a mouth stylus (to use with a tablet) for those with high spinal cord injuries.“I use the Echo/Alexa for lights, thermostat, making calls, and using DishNetwork,” says Alan, who has a C2 injury.

Both machines can also learn ‘routines,’ such as turning down your heat at night or making coffee at 6 am. “When I say ‘Good morning,’ it greets me with the weather, news, starts coffee, turns on the lights and sets the thermostat,” says Timm Aguirre, a quadriplegic from Arizona. “How it helped with my independence is amazing. When it’s cold at night and I’m in bed, I can warm the house with a simple voice command.”

And the security feature of calling in emergencies is huge. “My daughter (a C5 quad) is away at college and just started using the Echo. I like it because it’s always plugged in (not charging) and provides redundancy backup for emergency calls should she need help (after dropping her phone or if the phone is dead),” says Michele Thury, a mom from Minnesota.

Jan Scheuermann, a C2quadriplegic, uses her Echo for the same reason. “I was always worried if I was alone and needed help that there was no way to call out. Now I can just say ‘Alexa, dial 911.’ What a relief!” Kara Ayers meanwhile, a wheelchair-user and mom, has found her Echo to help with parenting. “I use our Echo dots as an intercom. I can play music in all of the house’s rooms. We have different songs that mean different things too (time for bed, food is ready, etc).”

Technology truly is a game-changer once again. Tech that has long been considered out of reach for many with disabilities has now come into play for millions around the globe. And for those in countries where access to occupational therapists is minimal, this is especially monumental. Having a chance at achieving a higher level of independence is always something every person with a disability deserves.

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Microsoft’s Inclusive Design Program is a Much-Needed Culture Reboot

Nancy DeVault

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March 16, 2018

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Microsoft’s Inclusive Design Program is a Much-Needed Culture Reboot

Most consumers correlate the Microsoft Corporation with software products like Windows, the operating system that’s likely on your computer. The majority of users don’t realize that the company adopted a new mission to “empower every person and every organization on the planet to achieve more.” More specifically, Microsoft is leading the way to do more in our overall culture through “inclusive design” by embracing diversity and disability to further innovation.

According to the World Health Organization, ‘disability is a complex phenomenon reflecting the interaction between features of a person’s body and features of the society in which he/she lives. Overcoming the difficulties faced by people with disabilities requires interventions to remove environmental and social barriers.’ About three years ago, Microsoft shifted its focus to such interventions with the development of the Inclusive Design Toolkit. “Microsoft has a history of focusing on inclusion in many ways. I was hired to help create the Inclusive Design practice to help change how we make and, as a by-product, what we make. Inclusive Design helps provide access and equity, reduce friction and provide a net-positive emotional experience for the greatest number of people,” Margaret Price, Microsoft’s Principal Design Strategist, tells AmeriDisability Services. Free to download, the toolkit consists of a manual, activities and videos featuring experts of varying abilities offering design process insight. The toolkit is used by individuals, companies and universities around the world, and Microsoft’s Design Strategists have also directly influenced more than 6,000 users attending Inclusive Design workshops.

Demand for Technology

“Designing for people with permanent disabilities can seem like a significant constraint, but the resulting designs can actually benefit a much larger number of people,” says Price of designs that ‘scale.’ She explains that, for example, if a design is made for people with one arm, the product also benefits those with a temporary wrist injury or parents cradling an infant. “We call this the persona spectrum. Learning from a common, shared motivation and designing for range of situations,” she says, explaining that the spectrum is used for (1) building scenarios and (2) building a business case for why it’s important. “If you think about the number of people who have one arm in the U.S., that’s about 12,000 people but, if you add up the number of people who have one arm, have a temporary wrist injury and who have an infant, you have about 20 million,” Price calculates.

Three Principals of Inclusive Design

Microsoft declares that “there’s no such thing as an average human being. All humans are growing, changing and adapting to the world around them every day. With Inclusive Design, we can create experiences that embrace and reflect that diversity.” In a YouTube presentation, Price explained Microsoft’s three principals for Inclusive Design:

1) Recognizing Exclusion: “We design with our own abilities, our own preferences, our own circumstances as a baseline and, when we do that, the people who can benefit from our designs are those with equal or greater ability. So, if you think about me as an example, I am right-handed, [speak] English as a first language and I’m pretty tech-savvy. If I design with those as a baseline, I am potentially excluding everyone that does not meet those same attributes from the design. What this also means is that, as experienced creators, we can often design exclusion into our experiences no matter how unintentional that may be.”

2) Learning from Diversity: Microsoft seeks input from designers and consumers of all abilities. “Once we can build empathy and learn from people who are completely different from us, we can use these constraints to build more innovative solutions because it’s people that are experts at adapting to situations around them.”

3) Solve for One, Extend to Many: “Identifying and understanding the mismatches of one, we can design extremely innovative solutions.” For example, closed-captioning was created for the deaf and hard of hearing and high contrast settings were created for the visually-impaired, but both of these inventions actually serve users for many reasons beyond the original intent.

Microsoft Inclusive Design Activities to train about inclusivity in technology

Transforming Culture

Price believes design is a powerful, problem-solving force in contemporary culture. “Design helps us understand and experience the world in new ways. Specifically, I often work with interaction designers and look at the way people naturally interact in environments as a model for how to create human-to-machine interactions,” she says, because interactions with technology usually centers on connecting people to one another through that technology.

Microsoft’s focus on inclusion has proved effective for consumers at-large and the company’s own workplace. “The impact is demonstrated in a massive culture shift. Mindsets and behaviors have changed. As a result, what we make has changed, ”Price says. For example, Saquib Shaikh is a Microsoft engineer who is blind. He uses screen-reader technology to code just as proficiently and creatively as a sighted-person. Shaikh helped to create Seeing AI, Microsoft’s free app designed for the low-vision community. It narrates the world around you to describe people, text and objects. Also, with Team Gleason, Microsoft refined eye-tracking and wheelchair navigation to benefit people living with ALS, or Lou Gehrig’s disease. And last year, a study by the British Dyslexia Association found that Microsoft’s One Note digital notebook helped dyslexic children improve their reading and spelling skills. Regarding the scale affect, Price says One Note’s technology has also helped people with Attention Deficit Hyperactivity Disorder (ADHD), those learning a second language and others with intellectual disabilities.

Price personally has ADHD and shared, “One of the reasons I work at Microsoft is to help build technology that’ll be used by people like me, who are deeply bothered by interruptions. Beyond a momentary disruption, interruptions like visual pop ups, sound, email calendar reminders, lights, etc. can be extremely distressing when trying to achieve sustained concentration. I love using the ‘do not disturb’ on my iPhone when working on the go because I can trust that my focus will remain on the task, not the tool.” Additionally, Xbox, a Microsoft brand, spearheaded an initiative to enhance social gaming for deaf and hard-of-hearing players. Some outcomes from the effort involved new inclusion of emojis on the virtual keyboard to allow deaf users to better convey and understand emotion, and the creation of the Deaf Gamers Collection which is just one example of an Xbox ‘club.’ Participants in this Xbox design series found that inclusive designs would, indeed, scale beyond the deaf community. “Accessibility is not the goal of inclusive design but, rather, observing how people of different levels of ability navigate a typical situation and use that analog as a starting point for design features,” shared August de Los Reyes, Design Director for Xbox.

Playmore Puts Fun in Functionality for Inclusive Playgrounds

Art & Design

Nancy DeVault

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March 12, 2018

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Playmore Puts Fun in Functionality for Inclusive Playgrounds

Playgrounds are supposed to be a fun communal space for children of all ages to playfully explore, make friends and learn through interaction. But sometimes these public settings aren’t designed to engage people with disabilities. As a result, families can feel excluded from the ‘norms’ of life. Inclusive playgrounds, however, are helping to break isolation barriers and empower all children and their loved ones ─ with and without disabilities ─ to play together in an innovative environment. The mother of Jonathan Lopez,who has cerebral palsy, described the impact of visiting Yellowjacket Park, an inclusive playground in Texas, stating, “This playground makes me feel happy, because I have a place I can take my son where it makes us feel like a normal family.”

Based in Fort Myers, Florida, Playmore Recreational Products and Services is a park and playground equipment provider that distributes Playworld products. Fitting as playgrounds are usually a family affair, Luke Russell co-owns Playmore with his brother, Ryan Russell, and serves as Vice President of Sales. “I was roped into the playground business at an early age. My dad, Ronald Russell, used to be a consultant for the Parks and Recreation industry,” Luke shared with AmeriDisability Services. He began working with his dad as a teenager and never outgrew his love of play. Since its inception, Playmore has built ADA-compliant spaces but believed that more inclusiveness was attainable.“While the ADA rules solve some issues, like accessibility, they don’t really address inclusiveness. Inclusiveness is really the next level, and involves a lot of planning and designing to do correctly, and dollars,” Luke says. “It’s difficult to get our customers to take that next step, mainly for budget reasons.”

The root of that hesitation is, unfortunately, misconception. Luke explains that many assume that inclusive playgrounds only cater to a small percentage of people. To the contrary, according to the Kaiser Family Foundation, twelve percent of the U.S. population has a severe disability that affects at least one function of daily living. This group of people does not live in a vacuum; they have children, parents, siblings and grandparents who are involved in their daily lives. Therefore, thirty-six percent of the population, or 1-in-3 people, is touched by severe disability. “So, it’s not just about people with disabilities. It’s about including EVERYONE into play and reaping the benefits of play, whether that is physical, sensory or social. Inclusion is more than access… inclusion makes the playground fun for everyone,” Luke proclaims. Presently, Playmore has 2,000 recreational spaces in Florida alone, of which about ten are inclusive ─ a number that Luke and his team hopes to expand.

Child sliding down a Playmore accessible playground slide, Courtesy of Playmore Facebook Page

Many users attest that the investment equates to meaningful and rich experiences. “The thing I like most about the playground is being able to chase my boys all around again. Being able to go to the very top and watch them go down the slide…being able to push them on the swings, and being able to just really interact with them again,” shared Devon Colbert, a firefighter who suffered paralysis following a car accident. “The difference is really between a solid surface playground and a wood mulch playground is, being in a wheelchair, they say it might be ADA-compliant but a lot of the time you become yard art.”

Playmore works with diverse planning committees, comprised of architects, inclusion experts and others to implement eight key inclusion objectives:

1. Physical, Sensory and Social Activities: A mix of features that stimulate and affect the broad well-being of children of varying abilities.

2. Multiple Challenge Levels: Presence of graduated levels of play to engage all ages and abilities.

3. Grouping of Activities: Strategic placement of equipment to foster contiguous play and engagement among children.

4. Elevated Play: Because children generally like to experience height, inclusion of varied perception.

5. Pods, Rooms and Zones: Incorporation of specialized areas that provide both stimulation and calming security.

6. The ‘Coolest Thing’: Establishment of a signature feature that is accessible to all.

7. Unitary Surfacing: Utilization of accessible materials, such as rubber tiles versus mulch.

8. Routes and Maneuverability: Creation of double-wide ramps and other accessible pathways.

Playmore has an inclusive assessment tool that serves as a checklist to ensure ideal functionality. The company also offers a comprehensive design guide outlining essential elements to seating, restrooms, drinking fountains, shade, parking, picnic areas, trash cans, cooling devices, service animals, signage and more. Most importantly, Playmore, in conjunction with Playworld, suggests specific disability-friendly equipment that best fosters inclusive play.

Playmore is also environmental-responsible. “Through green manufacturing, we can sustain our beautiful outdoor play spaces. The physical and mental benefits of outdoor play are substantial and should be preserved for future generations,” Luke affirms. For more information, visit PlaymoreOnline.com and Playworld.com.

Upgrade Day-to-Day Functionality by Downloading Mobile Apps

Nancy DeVault

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March 7, 2018

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Upgrade Day-to-Day Functionality by Downloading Mobile Apps

If you use a smartphone or other mobile device, you likely use apps. Games, directions, news, weather and much more are just a click or swipe away! Apps are easy to download on both Apple and Android devices and can conveniently upgrade your access to most anything. Explore your app store to find these and other helpful apps:

Disability-Related

BeMy Eyes | BeMyEyes.com
This free app connects blind and visually-impaired people with sighted volunteers for visual assistance. Through a live video call, volunteers can help users with daily tasks. For example, just point your phone to check food expiration dates, read instructions or navigate directions. The app claims that over 900,000 sighted volunteers currently aid more than 60,000 blind or visually-impaired app users in 150+ countries.

RogerVoice | RogerVoice.com
RogerVoice claims to be the first worldwide app for deaf and hard of hearing. It uses voice recognition to create real-time captioning so conversations can be read. Released in 2014 by Olivier Jeannel, who is deaf, the mission is to break communication barriers.

Look at Me | Play.Google.com
This Samsung app was designed in collaboration with professors and doctors to help children with autism better understand moods, express emotions and improve eye contact. It gamifies interactions with character cards, music, voice guides and themes. Test groups reported a 60 percent improvement rating when the app was used for 15 minutes per day.

Proloquo2Go | AssistiveWare.com

Available in English, French and Spanish, Proloquo2Go is a customizable, symbol-based app that aids language development and communication skills, especially among non-verbal people with autism, Down syndrome, cerebral palsy and other diagnoses. Users explain that it gives a voice to those who cannot speak.

Stepping Stones – Daily Routines | itunes.Apple.com

Since we all follow some type of routine, Stepping Stones lets users create visual schedule guides, referred to as “paths,” with one’s own photos. It can provide organizational support and increase independence for those with cognitive disabilities, attention disorders, anxiety, autism and other diagnoses.

TripTripHurray | TripTripHurray.com

This travel app aims to help travelers with disabilities and/or special needs avoid unnecessary inconveniences to better enjoy vacations. Choose a city and search for accessible lodging, transportation, places of interest, shopping, restaurants and services.

AccessNow |itunes.Apple.com

This free app allows users to search for accessibility of public places, like restaurants, hotels, retailers, etc. You can use the map feature to find nearby options by category. Plus, update and/or input information too.

Person holding a smartphone looking at mobile apps to improve functionality

Health & Wellness

Red Panic Button | RedPanicButton.com

Pre-set emergency contact information and, when needed, press the red panic button to immediately notify these contacts with your whereabouts (using Google Maps) via text, email and social media. You may include a video attachment and 10-second voice message.

Dexteria | itunes.Apple.com

Designed in consultation with occupational therapists, the Dexteria app turns your iPhone or iPad into a therapeutic tool to aid fine motor skills. The hand exercises work to build strength, control and dexterity.

MyMedical | itunes.Apple.com

This app ($5.99) lets you keep your medical records right at your fingertips. It’s sort of like a digital version of a filing cabinet housing medical info and history for each family member. You can also track results and view scheduled appointments.

Blood Pressure Companion | AppCrawlr.com

This combo app tracks blood pressure, heart rate and weight. Measurements are contained in charts that you can share with your doctor, and it conveniently allows you to set reminders.

Fooducate | itunes.Apple.com

Earning the top prize in the US Surgeon General Healthy App Challenge, Foodcuate helps users eat for health. When grocery shopping, scan barcodes to receive nutrition grades (A to D) and analyze information like added sugars, artificial sweeteners, trans-fats, etc. Also, track exercise, calories, sleep and more.

mySugr | mysugr.com

Selected as the Top Diabetes App by Healthline, mySugr is designed to help those living with diabetes manage their disease. The app logs and monitors daily blood sugar levels, insulin use, carb count and also offers lifestyle advice.

Meditation Studio | MeditationStudioApp.com

Looking to live more mindful? This app offers meditation options with various focuses, like anxiety, stress, happiness and gratitude. And its how-to guide makes it user-friendly for novice meditators.

Talkspace | TalkSpace.com

If the thought of lying on a therapist’s couch makes you anxious, try a text conversation instead. Consult with a licensed therapist daily for just $49/week for individuals or $79/week for couples.

AliveCor | AliveCor.com
Because heart disease is the No. 1 killer of Americans, AliveCor empowers users to be in the know regarding heart-health. Turn your smartphone into a medical-grade electrocardiogram (EKG) monitor to see if your heart rhythm is normal or if atrial fibrillation is detected; then, share results with your doctor.

Migraine Buddy | App.MigraineBuddy.com

This tracking app helps migraine suffers monitor and identify triggers, symptoms, frequency, duration and intensity. The goal is to help prevent and/or better treat future occurrences.

My Pain Dairy & Symptom Tracker | MyPainDiary.com

Actively work with your physician by arming him/her with the most accurate information. This app allows users to record pain and symptoms to foster better communication with healthcare providers.

Senior Living

EyeReader | iTunes.Apple.com

This app ($1.99) uses the LED light of your smartphone to magnify text. It’s ideal for seniors who struggle to read menus in dim restaurants or the fine print on prescription bottles.

Find My iPhone | itunes.Apple.com

If you accidentally misplace your device or leave it somewhere, fear not as this app can temporarily lock your device (to protect your data) and direct you to its location via mapping.

Senior Savings | itunes.Apple.com

Calling all savvy shoppers, this app helps users save money by locating senior discounts.

Skype |Skype.com

You can have quality face-to-face conversations with loved ones no matter how many miles apart you are. Use Skype on your mobile device or computer to visually connect.

Clevermind | MyCleverMind.com

This multipurpose app includes an Intelligent Robotic Assistant to answer your questions, and platforms for social media, books, music, news, health and more. Plus, it contains tons of quizzes and games designed to keep your mind sharp.

Yesterday USA | App.Crawlr.com

Dial into retro music from the 1920s to the 1950s. Tune into the genre of your time with this volunteer-run internet radio station.

Game-Changing Charity Plays Up Virtual Reality Experiences

Tech

Nancy DeVault

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March 2, 2018

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Game-Changing Charity Plays Up Virtual Reality Experiences

Some critics say video games are a waste of time. To the contrary, studies have found video games can improve hand-eye coordination, strategic thinking skills and teamwork. For 19-year-old Dillon Hill and 20-year-old Chris Betancourt, video games provide “joy and escape.” These best friends founded Gamer’s Gift, a California-based nonprofit using video games and virtual reality to promote well-being and positive spirits, particularly among people with disabilities, seniors and hospital-bound and/or ill patients.

It all began with Chris’ leukemia diagnosis. “I was in the hospital every single day as my best friend, Chris, battled cancer in fifth grade, and video games were a great opportunity for us to escape the hospital room and enter a virtual world,” Dillon tells AmeriDisability. In high school, the two faced more heartache when Chris’ sister, who was also Dillon’s girlfriend, died from suicide. Once again, the friends turned to gaming to grapple. Then, they pondered the potential of this coping mechanism. “I wanted to create something that could help other people in the same way. So, sitting in my high school English class with Chris, we decided to Google ‘how to start a nonprofit,’” Dillon recalls.

In just two years since the duo established Gamer’s Gift, the organization has raised more than $50,000 and engaged thousands of individuals. “Most of our energy goes to providing virtual reality experiences to children in the hospital, assisted living facilities and people with disabilities. These groups all lack opportunity in some way, usually due to physical or mental limitations. With virtual reality, they can experience new things, like traveling across the world, scuba diving or riding roller coasters from their hospital bed or wheelchair,” Dillon explains.

Gamer's Gift charity working with a boy to play videos game from his wheelchair

Gamer’s Gift has donated equipment and games to several sites. Plus, Dillon, Chris and their small team of fellow young adults travel to various facilities to foster gaming and/or virtual reality sessions. Bethany Sowell, Philanthropy Content Specialist at Valley Children’s Healthcare says, “Gamer’s Gift is a great group to work with. They have brought hours of joy to our patients by providing video equipment but, more importantly, they have given the gift of the time they spend with our patients.”

Gamer’s Gift is showcasing how immersive technology can allow anyone to experience just about anything. “You think of a body that’s not cooperating, but your mind is there and you’re having all these hopes and dreams and wanting to do things,” Chris Dorsey, Director for UCP of Sacramento’s Adult Growth Experience Day Program, shared in a Sacramento Bee article, adding, “Virtual reality is a window to get them out of their chair. An opportunity to do things and see things, learn things.” Through virtual reality goggles, UCP’s participants, who have cerebral palsy, experience the adrenaline rush of thrill rides and the calm of swimming alongside dolphins and tropical fish. Similarly, at Atria Carmichael Oaks, an assisted living community, senior residents braved ski slopes, and one 94-year-old tenant named Tony traveled to Rome, New York. He hadn’t visited his hometown for two decades and never thought he’d be back; but Gamer’s Gift transported him home using mapping technology and specialty eyewear. Gamer’s Gift has touched the lives of many, like Dominic, a paraplegic who drove full speed in a race car and Charlie, who learned to maneuver the game remote with his feet because he doesn’t have hand mobility. Colette Case, Child Life Coordinator at George Mark Children’s House, which provides pediatric palliative care, and her team humbly explain, “Using the virtual reality helps the patients forget about being in the hospital and gives them an opportunity to have some fun. It also helps them with their pain control because they are focusing on something else.”

Virtual reality benefits gamers with disabilities

In October 2017, Chris told Dillon that his cancer had returned and doctors cautioned that he may only live another year. During that emotional call, Chris uttered,“I’m afraid I won’t be able to experience the things I want to in life.”Dillon, a double major at the University of California, Davis, immediately withdrew from college to embark on a bucket list endeavor with his best friend. On their new website, MyBestFriendsList.com, the pair chronicles their attempts at 127 (and counting) bucket list goals. They’ve already flown a plane, gotten matching tattoos, met Danny Devito, fed the homeless and more. There’s much left to experience, like visit Japan, help a homeless person find a job and brave a blind date. And Chris is looking for a bone marrow donor that could perhaps offer him a life-saving reboot. This very personal passion project has not distracted Chris and Dillon from their purposeful efforts at Gamer’s Gift.

Gamer’s Gift also hosts game night events and conventions. The organization accepts both financial and equipment donations. For more information, visit GamersGift.org.

Article photos courtesy of Gamer’s Gift.

Therapist Offers “Sexpert” Advice to People of All Abilities

Nancy DeVault

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February 26, 2018

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Therapist Offers “Sexpert” Advice to People of All Abilities

Pennsylvania native Dr. Danielle Sheypuk says she’s always believed she was meant to do something big. And that she has ─ big and, more precisely, bold! She earned a Ph.D. in psychology from the New School of Social Research in Manhattan and, organically, embraced a specialty inspired by her disability. Born with spinal muscular atrophy type II, a genetic disorder affecting control of muscle movement, Dr. Sheypuk focuses on dating, relationships, intimacy and sexuality, particularly among people with disabilities.

Not long ago, talking about sexuality in relation to the disabled was taboo, says Dr. Sheypuk. “My family never talked to me about dating or sex, whereas they would casually talk to my younger sister about dating or cute boys. And family friends would fix her up, but not me,” Dr. Sheypuk recalls. “I felt excluded, like I didn’t belong in the world of dating and romance because I’m in a wheelchair and, so, not desirable in that way.” But deep down she knew otherwise and, ultimately, proclaimed the contrary. “We have the same drives, needs and desires as anyone else. Although, people assume that if you have a disability, you are asexual or too sick to have sex.”

By addressing such inaccurate assumptions, Dr. Sheypuk earned the label of “sexpert.” “I enjoy the edginess of the title. It’s attention-grabbing,” she says and, thus, opens the door to broader conversations about people of all abilities being sexy, datable and lovable.

In 2012, Dr. Sheypuk launched her private practice with Skype-led sessions, an expanding concept known as telepsychology. The approach greatly increases accessibility for all clients, but especially so for those with disabilities. And while she treats patients who do not identify as disabled, the majority of her clients are disabled; they seek her care because of presumed understanding. “I have a disability myself and, so, that’s really important to my clients with disabilities [for relatability],” she says.

Dr. Sheypuk openly shares that, like her clients, she’s faced misconceptions in her love life. On online dating sites, potential suitors have asked, “Can you have sex?” Her response, “Yes, can you?!” Such forward questioning is partially because of the semi-anonymity of social platforms, but it seems that people with physical disabilities are judged more so than others? For instance, wouldn’t it be inappropriate to ask an obese person if their weight interfered with sexual function? “Men may worry that you’re not able to have sex [because of your disability] or that you’re not able to please them like quote-on-quote normal women,” Dr. Sheypuk suggests, explaining that it can be damaging to oneself to be interrogated like this because humans internalize negative stereotypes.

On the flip side, Dr. Sheypuk welcomes explicit chatter with her clients. “A big topic that comes up is masturbation. Some of our conversations get graphic and they have to be, because when you’re talking to clients with disabilities who maybe can’t control the movement of their hands, we brainstorm ideas on how to do it,” she says, adding, “The sex drives of people with disabilities is not impaired so it can be frustrating [to find satisfaction].” Dr. Sheypuk helps clients think creatively to identify how they can comfortably enjoy and explore sexuality.

The world beyond Dr. Sheypuk’s client base took notice of her efforts to derail the stigma around sex for people with disabilities. She became a media-savvy sexpert for various media outlets, including her own column, Ask Dr. Sheypuk. She was even called the ‘Carrie Bradshaw in a wheelchair,’ a comparison to the sex columnist portrayed by Sarah Jessica Parker on HBO’s Sex and The City. Then, Dr. Sheypuk turned her mission into a semi-controversial pageant platform. She was crowned Ms. Wheelchair New York (2012) and earned second runner-up at Ms. Wheelchair United States.

In 2014, fashion-lover Dr. Sheypuk became the first wheelchair-dependent model to ‘walk’ the runway in New York’s Fashion Week. Never intended to distract from her practice, she explains, “All of it tied into being glamorous and sexy in a wheelchair.” She wears form-fitting clothes, highheels and styled hair regularly and looks, well, sexy! Dr. Sheypuk’s fashion statement reminds everyone that sexuality is a part of human nature –regardless of ability.

In 2015, Dr. Sheypuk checked off another bucket-list item ─she led a TEDx Talk called Good Sex with Any Body. “A TEDTalk has to be solution-focused where you state the problem and talk about how to change it. The problem [I addressed] is that people don’t see us [disabled] as sexual partners,” she declares. “Humans are inherently selfish so [I thought] ‘how do I express to someone that dating someone with a disability can benefit them and change their life?’” pondered Dr. Sheypuk, considering the rate of divorce and unsatisfactory sex lives. “Well, we have a population of really good romantic partners, so give it a shot and maybe you’ll find yourself satisfied in a romantic relationship [with a person with a disability].”

Dr. Sheypuk says society’s notion of sexy is portrayed in media as physically fit people with traditional forms of sex. However, she’s starting to notice a much-needed shift, perhaps from inclusiveness like this AmeriDisability article, with the norms of sex evolving. For more information about Dr. Sheypuk and her Skype-based options, visit DanielleSheypuk.com and follow her on social media (@dr.daniellesheypuk).