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Perservering Through Paralysis

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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/.

Making a House a Home with the Echo & Google Mini

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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.

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

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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

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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

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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

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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

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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).

Tech-Savvy Teen Developing an Inclusive Mobile App

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Most teenagers are wired for today’s world of advanced technology, and 13-year-old Alex Knoll is no exception. Well, that’s not exactly accurate because he really is an exceptional person. You see, instead of spending time on typical teen-focused technology like social media platforms and online gaming, the Post Falls, Idaho native is focused on building the framework for an inclusive mobile app. Ability App will “improve the lives of all people with disabilities by giving them the resources to make informed decisions.”

Alex says inspiration came from a complete stranger about four years ago. He saw a man struggling to enter a store. “I felt really bad that there wasn’t an automatic door for him,” recalls Alex, wondering if an app housing accessibility information existed… it didn’t. Alex recognized that, prior to that moment, he hadn’t realized the important needs of people with disabilities ─ and others likely needed an eye-opener too. He immediately took action as an inclusion advocate and began developing Ability App to “help people with disabilities and their caregivers navigate public spaces and find safe, reliable services and employment opportunities.”

“Alex hopes that his app will be an amazing tool for people with disabilities to use in their everyday lives but, at the same time, his larger mission is to raise awareness and, as a result, create a more accessible and inclusive world for people with disabilities,” says his mother, Annie Knoll.

Alex submitted his pioneering prototype to Invent Idaho, an innovative competition for students, where he won ‘Best of Show.’ There cognition steadily continued. He won top honors at numerous competitions, including I Cubed, the AT&T and Imagination Foundation Inventor’s Challenge and the Discovery 3M Young Scientist’s Challenge. Plus, community leaders and business executives, like Apple Inc. CEO Tim Cook, also took notice and, as a result, Alex began speaking regularly about his vision at community, economic, education and technology forums both domestically and internationally. “Although many other similar products have sprung up since Alex started his mission with Ability App, there are no all-inclusive global accessibility tools that include information on accessibility-friendly features for people with ALL types of disabilities,” Annie declares of the distinction.

While recognition is priceless, developing Ability App comes with a hefty price tag. During an appearance on the Ellen DeGeneres Show, the funny talk show host, who Alex describes as his “hero,” presented him with serious cash: a $25,000 donation from Shutterfly! Alex also brought in an additional $9,000 through GoFundMe. Still, fundraising remains a challenging priority. “The $300,000 that Alex is trying to raise will help with the development and continuation of Ability App. You can imagine how complex a project like Ability App is… providing a use-friendly interface that can be used by such a diverse group of users,” Annie says. It’s those detailed complexities, however, that will create inclusiveness. For example, the app will offer both voice command and eye-tracking software to better serve users with visual, vocal and limb impairments.

Alex, who is homeschooled, devotes about one to two hours daily to Ability App, and is also partnering with tech experts and volunteers. Hyper giant, for example, is an Austin-based company assisting with developing the apps three phases. “When I met Alex at the Think Big Festival last year, I was so impressed. Not just by his app, but by his drive to use technology to make peoples’ lives better. I know how important it is to have guidance in tech even when you’re an adult, so I wanted to support him in any way I could,” says Marc Boudria, Hypergiant’s VP Artificial Intelligence. Marc says he and his colleague, Matt Murray, act as virtual Chief Technology Officers by offering guidance, advice and support on design, strategy, engineering and business.

The first phase concentrates on crowdsourcing data collection using volunteer Ability Ambassadors. “I have over 600 of them around the world and they are going to help me populate the data for the app, and note what businesses in their area and the places they travel to are accessible,” Alex explains. “Everyone is welcome to become an Ability Ambassador and it is a much needed volunteer group,” encourages Alex’s father, Brian Knoll. These aides will establish and update disability-friendly features of locations, such as wheelchair ramps, braille signs, service animal relief spots, assistive technology for hearing impaired and more. The second phase will emphasize accessible employment; and the third phase will present services and features like grocery delivery, transportation, etc.

Alex says he’s especially learned a lot from one Ability Ambassador, Tara Miller, a family friend who is a paraplegic. “She’s given us a lot of pointers and ideas for the app,” Alex says, like suggesting simple modifications that businesses and public facilities can do. For example, coat hooks in restroom stalls are typically located near the top of the door and, thus, not ideal for wheelchair users. Hooks can easily be repositioned to a lower level for increased accessibility.

“He’s on a mission to do good for others,” says Brian. “It’s been rewarding for Alex to hear from people all over the world talking about how they are inspired by what he is doing and how they hope to do something to make the world a better place too.” And Marc agrees, “With Alex’s ambition, compassion and eye for technology, he has a long future ahead in technology and making a difference in the lives of others.” Once complete, the Ability App will be free to download. In the meantime, visit AbilityApp.org for more information, sign up for progress updates, volunteer as an Ability Ambassador and donate to the effort.

Home Delivery Services Serve Up Improved Accessibility to Food and More

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The Americans with Disabilities Act (ADA) requires stores, including grocers, to meet a level of accessibility. Yet, that doesn’t make supermarket shopping especially appealing to consumers with disabilities or seniors. Hurdles exist; for example, aisle displays hinder accessibility, electric shopping carts aren’t always charged or functional, signage isn’t available in braille and, well, accessible transportation to even get to a grocer may be problematic. In fact, a Bureau of Transportation report found that more than half a million disabled people never leave home because of transportation difficulties. However, home delivery services and subscriptions may provide convenient solutions for improved accessibility to food and much more.

Grocery Delivery

Founded in 2014 and now available in more than 70 markets nationwide, Shipt is a grocery service offering same-day delivery thanks to a fleet of personal shoppers. It’s easy to use; place an order and schedule a delivery time through the Shipt app. Memberships ($99/year) grant customers unlimited deliveries from Publix, Kroger, ABC Fine Wine & Spirits and other retailers with free delivery on orders $35+ (otherwise $7 fee). In December 2017, Target acquired Shipt, so soon same-day delivery will also be available for most anything the big-box chain carries including electronics, home essentials and more.

Competitors like Instacart and WeGoShop offer similar delivery services with stores like Costco, CVS Pharmacy, Petco, Publix, Whole Foods and Total Wine & Spirits. Plus, if you’re vacationing at the most magical place on Earth, Goodings Supermarket delivers to Walt Disney World Resorts. And, have you ever wished for a grocery drive-through? Well, Walmart now has it ─ and without added costs. They invite you to shop online, set a pick-up time and, then, use the designated grocery parking area at your local store where a Walmart associate will load your items into your car.

Government Distribution

The U.S. Department of Agriculture (USDA) told AmeriDisability that, “improving food access to the elderly and disabled who are unable to shop for food is essential.” The USDA explains that its Supplemental Nutrition Assistance Program (SNAP) “is the nation’s nutrition assistance safety net [formerly known as food stamps]. Some Americans need additional support to put food on the table for their families because they are unable to find work due to age or disability, or because they work but do not earn enough. Eligible households can supplement their family’s nutrition with SNAP benefits during the tough times and then transition off the program when circumstances change and they move to self-sufficiency.”

Because nearly 1-in-5 SNAP participants are either elderly or disabled ─ and, therefore, may face unique obstacles to obtain groceries ─ in 2016, the USDA launched a delivery pilot program to improve access to food. “Home delivery of groceries will help ensure that elderly and disabled SNAP participants who are unable to shop for food have access to the nutrition they need to maintain a healthy diet,” said Kevin Concannon, Undersecretary for Food, Nutrition and Consumer Services, in a press statement. “Home delivery is particularly important for seniors living in rural areas because America’s rural population is older than the nation overall and rural seniors experience higher poverty than others.”

The year-long pilot took place in five states with delivers executed by partnering organizations: Denver Food Rescue (Denver, CO), Lutheran Social Services of Nevada (Las Vegas, NV), Many Infinities, Inc. (Alabaster, AL), Senior Services of Alexandria (Alexandria, VA) and Store to Door (Roseville, MN). Regarding the future of this SNAP initiative, the USDA told AmeriDisability Services, “Outcomes from the trial period including feedback from the participating organizations are being evaluated, as lessons learned during the pilot will help shape final rulemaking.”

Meal Service

Foodies can not only forgo shopping but also bypass menu planning and food preparation. That’s because culinary experts have designed convenient meal delivery kits featuring ready-to-make gourmet goodies. Interested? Check out kit reviews at Reviews.com.

BlueApron was among the first to mix up everyday meals for at-home cooks with weekly subscriptions. Vegetarian or meat/fish options serve ample portions; and, since step-by-step instructions come with ingredients, all you need is gear—pots, pans, spatula, etc. Using either two-person or four-person recipes, you can savor dishes beyond your standard go-to meals. Likewise, Hello Fresh offers customizable chef-curated recipes for fresh servings cooked in less than 30minutes. Both companies ($9.99+ per meal) also have wine pairings so you can toast to your convenient culinary concoctions.

Chef’d has an impressive assortment of breakfast, lunch, dinner and dessert choices, but without subscription requirements. Place orders ($29 for 2 meals) to satisfy cravings as needed. Select kits based on ingredients, cook time, cuisine type, dietary style (i.e. paleo, gluten-free), etc. Gobble fast-tracks the same concept using 3-step recipes ($11.95 per meal) prepared in one pan in15 minutes – because less clean-up is absolutely appetizing, right?

Other food delivery kits satisfy specific hungers, like Harbour Trading which delivers wild-caught seafood ($35 per meal); Foodstirs, a modern baking company for those who love sweets ($14+ per kit); and SunBurst, specializing in organic and sustainable goods for clean eating. You can drink up beverage deliveries too. Like MistoBox for coffee ($13 per week), Winc for wine ($13 per bottle), CraftX for beer ($60/month for twelve 16-oz. cans) and Mash & Grape for spirits ($49+ per month).

For those who need meal deliveries without the burden of cooking, Meals on Wheels America supports more than 5,000 community-based senior nutrition programs nationwide. Volunteers deliver meals, offer transportation, conduct safety checks and more. For example, the Seminole County chapter in Sanford, Florida delivers up to two meals per day, Monday-Friday, to homebound residents who are 60+ years and unable to prepare healthy meals. There is no cost, although donations are recommended.

Restaurant Delivery

Some establishments, like pizza parlors, offer home delivery. But, for restaurants that don’t, consumers do have options. Uber Eats is a food delivery app from Uber (yup, the popular transportation service) that makes “getting great food from your favorite local restaurants as easy as requesting a ride.” Use the app to browse restaurant choices, place your order (booking fee applies) and track it. Also try BiteSquad, GrubHub, Delivery Wow, Door Dash and Door Step Delivery.

Medication Supply

Many pharmacies offer medication delivery, such as Walgreens, CVS, Walmart and even local grocers. Some insurance companies allow for a 90-day supply to be delivered directly to your doorstep, rather than the standard 30-day supply from pharmacy pick-up counters. Other online medication outlets, like TriCare, offer home delivery as well.

Just for Fun

Don’t let date night excitement fizzle out because of accessibility limitations; opt for a fun at-home kit through DateBox Club. Monthly subscriptions, ranging from one to twelve dates ($29+/month), promise “awesome, one-of-a-kind dates that will have you laughing, connecting and communicating in totally new ways.” Similarly, Faith Night In ($35 per date) aims to deepen a relationship with God and with each other through thought-provoking home-based date experiences. And, in today’s digital world, entertainment is often attached to a screen but it doesn’t have to be! Unplug for unforgettable amusement with Game Box Monthly. As the name suggests, deliveries bring a new tabletop game so you can connect with the ones you love through classic pastimes.

Lastly, for just about anything, there’s Amazon. You can order an array of over-the-counter medications, household goods, food items, clothing, games and so on. Amazon Prime members ($99/year) get unlimited free two-day shipping, plus access to movies, music and Kindlebooks.

Theater Breaking Through Barriers Making Theater Possible for All

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“All the world’s a stage,” Shakespeare would have said, but most people don’t have those with disabilities in mind when watching theater. Except for one man: Ike Schambelan. Until his passing in 2016, and because of his passion for Shakespeare, Schambelan directed his own Off-Broadway theater company, Theater Breaking Through Barriers (TBTB), to showcase the writing and artistic talents of those with all abilities. TBTB originally started in 1979 as Theater By The Blind, and became well known not only for performing unique interpretations of Shakespeare, but also for plays that featured blindness and disability.  As the company grew over the decades, more artists came on the scene with other disabilities, and they changed to their current name in 2008 to more accurately reflect their mission.

TBTB produces different types of plays: those that feature disabilities (for example, “Whattaya Blind?!” an exploration of how society looks at blindness) and other plays that feature Schambelan’s interpretations of Shakespeare, where the actors showcase their talent.

According to Nicholas Viselli, the current artistic director at TBTB, “disability matters as much as they want it to” for each of the plays. After hiring talent through open auditions, TBTB starts each play by interpreting scripts and building the world of their story on stage. From there, they collaborate with each artist to figure out how to tell the story with their various abilities in mind. If the script has a character turning a cartwheel, for example, and an actress can’t do that, they would work with her by creating an accessible prop or coming up with another alternative adaptation to the scene. In the end, each person involved uses their talent to put on professional, quality theatre.

But through all the workshops, and drama, their main goal is to simply change people’s perceptions one step at a time. Viselli says that society has come along way in accommodating people with disabilities, but the age-old assumption of serving them out of pity is still prevalent largely because people with disabilities aren’t seen that often in theater or portrayed accurately in other mediums. But this isn’t to blame solely on society, either. Viselli realizes that we all have this engrained sense growing up that someone’s life must be more difficult when they don’t have the same capabilities mentally, physically, and emotionally. This assumption is a limitation, and artistic avenues like theater can spark change by showing a different perspective. Many times, people come out of TBTB’s plays saying, “Wow, that was really good! Where was the disability?” That comment is the greatest one Viselli could ever receive, and summarizes the goal of their company: to prove that everyone is a person capable of pursuing anything they want to regardless of their limitations, needs and differences.“Anybody can become disabled at any time,” Viselli says, “and that makes our work common ground…and it allows us to talk to, about, and for everyone.”

TBTB also helps prospective thespians grow in their craft by offering classes, play readings, and an Intensive Playwright Workshop which showcases the talents of current and prospective members. They’re offering more workshops in 2018. To learn more about their work and upcoming opportunities, visit their website or email Viselli at tbtbinfo@gmail.com.

Photo from the production Healing (2016)