Page 1

SEP-OCT 2018

AmeriDisability AMERICA’S PUBLICATION FOR THE DISABILITY COMMUNITY

FASHION

ANGELA ROCKWOOD Model, Actress & Innovator


3

AmeriDisability September-October 2018


AmeriDisability

In This Issue

Publisher & Editor - Florida Sheila Mahan

Inclusion - Fashion 5

Design for Disability Outfits Cerebral Palsy Foundation Models with Fashion Creators

9

Open Style Lab: Creating Clothing for Functionality and Style

13

Two Models, Two Wheelchairs: Both on a Mission for Change

Contributors Nancy DeVault, Ellen Callahan, Emily McDeed, Tiffiny Carlson, Lisa Beach, Angela Clarke

15

A Little Fashion Accessory Makes A Big Fashion Statement

21

Target Hit the Bulls-Eye with Sensory-Friendly Clothing

Advertising & Subscription info@AmeriDisabilityServices.com

25

Aerie Undergarment Line Uncovers the Untouched Beauty of “Real” Women

Mailing Address AmeriDisability Services P.O. Box 620728, Oviedo, FL 32762 Contact info@AmeriDisabilityServices.com Phone: 1-888-405-3860 Fax: 1-888-308-8024

In the Spotlight

Ad Material Submission Deadline October 5th for the November/December Issue Cover photo courtesy of Angela Rockwood.

18

One Dad’s Vision for Daughter’s Artistic Eye Patch

31

The Beauty of Ms. Wheelchair America’s Mission to Serve

45

Dolls with Disabilities Play Up Uniqueness

BECOME A CONTRIBUTOR AmeriDisability magazine welcomes article submissions and story ideas. Promote an upcoming event, share your story or suggest industry news topics. Contact us at info@AmeriDisabilityServices.com

Guest Interview 19

Angela Rockwood: A Beautiful Role Model

40

Jessica Ruiz: A Make-Up Artist’s Beautiful HandsFree Method

Writer’s Corner 19

www.AmeriDisabilityOnline.com

Angela Clarke How to Survive When Everything Falls Apart: Bend Don’t Break

Around Town 51 DISCLAIMER: WE ENDEAVOR TO KEEP THE INFORMATION IN THIS MAGAZINE UP TO DATE AND ACCURATE; HOWEVER, WE MAKE NO REPRESENTATIONS, GUARANTEES OR WARRANTIES, EXPRESSED OR IMPLIED, ABOUT THE COMPLETENESS, ACCURACY, OR SUITABILITY WITH RESPECT TO THE INFORMATION, PRODUCTS, SERVICES OR PROFESSIONALS CONTAINED HEREIN. THE INFORMATION PROVIDED IN THIS MAGAZINE IS NOT INTENDED TO AND DOES NOT CONSTITUTE LEGAL FINANCIAL OR MEDICAL ADVICE, NOR IS ANYTHING SUBMITTED TO THIS MAGAZINE TREATED AS CONFIDENTIAL. YOUR USE OF CONTENT IN THIS MAGAZINE IS AT YOUR OWN RISK. THE CONTRIBUTORS, ADVERTISERS AND ALL OTHER LISTINGS CONTAINED HEREIN DO NOT IN ANY WAY CONSTITUTE A REFERRAL OR ENDORSEMENT BY AMERIDISABILITY, AMERIDISABILITY SERVICES, AMERIDISABILITY SERVICES MAGAZINE, AMERIDISABILITYSERVICESMAG.COM OR AMERIDISABILITYSERVICES.COM. COPYRIGHT 2017 AMERIDISABILITY SERVICES. NO PART OF THIS MAGAZINE MAY BE REPRODUCED WITHOUT WRITTEN PERMISSION FROM THE PUBLISHER.

Local, state and national events

Resources 53

Adaptive Clothing Resources

AmeriDisability September-October 2018

4


Fashion

Design for Disability Outfits Cerebral Palsy Foundation Models with Fashion Creators By Nancy DeVault Richard Ellenson describes himself as a “typical advertising guy.” Well, typical isn’t exactly the most appropriate term as he’s credited with creating highly successful campaigns for brands such as American Express and HBO (penning the wellknown tagline, “It’s Not TV. It’s HBO.”). And, generally speaking, he is an outstanding individual. Ellenson also defines himself as a loving father to his teenage daughter, Taite, and 20-year-old son, Thomas, who has cerebral palsy. His dad role motivated a career shift into assistive technology and, four years ago, he became CEO of the Cerebral Palsy Foundation (CPF), an organization transforming lives through research, innovation and collaboration. Cerebral Palsy is a physical disability that affects movement and posture, according to CPF. Globally, over 17 million people have cerebral palsy. Thomas is a smart, funny and talented theatre actor and critic who operates Theateriffic.net. He uses a motorized wheelchair, a communication device and struggles to find stylish clothes that fit his needs. That’s because, according to Ellenson, Thomas (and others with cerebral palsy) occasionally drools and, therefore, has to wear unflattering bandanas or change his shirt frequently. Ellenson decided to explore options for function fashion. “I wanted to do something to show that fashion informs how we think about everybody and it can be something that helps us think about people with disabilities,” he says, adding, “because the way we dress, the way we speak and so on reflects how people see us.” And, unfortunately for people with disabilities, appearances (including fashion) can fuel misconceptions. In 2016, Richard linked up with the Fashion Institute of Technology (FIT) to engage upcoming designer students with the most under-represented group in fashion: models with disabilities. The project was named Design for Disabilities. “The goal was not necessary to bring out a collection but to mentor young designers so the language of inclusion and accessibility starts to filter through the top design schools in 5

AmeriDisability September-October 2018


Article photos: Cerebral Palsy Association - Designe for Disability Fashion Show and Gala the country,” he says. Students worked hand-in-hand with models with disabilities – identified through CPF’s social platforms, partners and ambassadors – to learn about dressing and wardrobe challenges and, then, construct improvements. Models then hit the runway during CPF’s annual gala where garments were judged by famed designer Thom Browne and other industry experts. In 2017, CPF partnered with renowned designer Derek Lam to mentor more students at FIT, Parsons School of Design and Pratt Institute. According to The Cut, Lam expressed his desire to partake in the much needed dialogue: “We are talking about very serious things like diversity and gender and empowerment — but I feel like the conversation never really comes up about a large segment of the population, which is those with disabilities.” The creation process (of athletic, casual and formal pieces) under his leadership was documented via six online videos featuring both designers and models. The videos garnered over 7 million views! “For me to put on pants in a chair is just so hard. So, with the zipper on the side it was a lot easier, a lot more roomy and more convenient,” shared model Desiree Raymond, who has

transverse myelitis (inflammation of the spinal cord) and is working toward a Health Service Administration degree. She helped Parsons’ Claudia Poh realize her goal to identify existing problems and propose inclusive solutions. Model and filmmaker Andrew Pilkington, who has cerebral palsy, says FIT’s Indigo Choi used stretchy material to outfit his needs. “I really like the design she came up with to make my pants a lot more flexible,” he says. FIT’s Kristi Thompson designed sportswear to combat chaffing that Minda Dentler, a wheelchair-using ironman triathlete, would get during lengthy competitions. And for Hilda Caba, who hadn’t worn a long gown since her spinal cord injury, Thompson cut an L-shaped dress that wouldn’t bunch around the waist while seated in a wheelchair. The videos helped viewers understand how and why accessibility was needed and achieved, such as through durable shirt cuffs (as not to fray from manual wheelchair use), stretchable and breathable materials, proper length and/ or measurements and varying clasps. Fashion designer Anna Sui served as the 2018 mentor and continued design achievements. However, Ellenson says Design for Disability may soon explore manufacturing and encourage companies to produce and sell accessible

AmeriDisability September-October 2018

6


collections. “Manufacturing is a different issue but, this year, we are actually talking more about how we can create these outfits and bring them to the world,” he says, explaining that presently, “Our work is more looking at how you create fashion and also celebrate the disability.” That’s something he describes as “an interesting conversation because many people with disabilities want to blend in and others want to call attention to their disabilities.” Design for Disability is representative of the broad range of CPF’s groundbreaking work. Key efforts for CPF include: The Early Detection Initiative (T.E.D.I), aimed at bringing down the detection age for developmental disability, thereby allowing earlier interventions of life-changing therapies; Just Say Hi, school inclusion program changing how we teach and include students with disabilities and other differences; highprofile collaborations with institutions, organizations, corporations and entertainment (like with the TV series Speechless); and Evolve21, a newly-released health and wellness mobile app. To access more information, visit YourCPF.org. “Just because you have a disability doesn’t mean you can’t be fashionable,” says model Jessie Chin. And we at AmeriDisability Services agree! Head to our Facebook and Twitter pages to share how fashion could be more accessible for you.

“Just because you have a disability doesn’t mean you can’t be fashionable.” - Jessie Chin

7

AmeriDisability September-October 2018


AmeriDisability September-October 2018

8


Fashion

9

AmeriDisability September-October 2018


Creating Clothing for Functionality and Style By Emily McDeed For most, putting on clothes is one of the many monotonous, five-minute activities done to start the day. But for those with disabilities, mainstream clothing can be a challenge to overcome each morning. Someone with paralysis may not be able to dress independently depending on their needs, while others may simply need help swinging a jacket sleeve across their back from limited mobility. While the simple solution may be to ask for help, the longterm solution for the disabled community would be to create clothing that works with their abilities rather than the person learning to work around the clothing. A team of dedicated individuals provides this solution through Open Style Lab (OSL).The team at Open Source Lab (OSL) offers this opportunity to anyone of the disabled community, free-ofcharge. Now a nonprofit, OSL originally started in 2014 as a service project at MIT. Executive until director Grace Jun joined the organization in 2015 and moved it to New York the following year. Here, they offer services through a collab course out the school year at Parson’s School of Design, including a theme-based Summer Program. For each semester, students from different engineering and design disciplines at Parson’s work together in with one of three to five clients in teams to address their their clients’ specific needs, whether that’s making a garment that regulates temperature, has flexible fabric for limited range of motion, or anything else that mainstream clothing doesn’t address. The team then creates the garment through their set of in-

house and mainstream tools, such as 3D printers, interactive computer chips, and sewing machines. As everyone goes through the process, clients not only feel more comfortable with expressing their needs but also gain confidence as they help develop a finished garment that’s functional and stylish. The Summer Program has fellows from different occupations work with their clients to create garments rather than merely consult with them as they do during the school year. Instead, OSL assembles a team of designers, engineers and Physical and Orthopedic therapists to design clothing for clients that match a chosen theme, such as this year’s Aging, Mobility and Care. Once clients are selected, each team works on clothing solutions with design experts, learns about different types of assistive technology and fashion design, and develops a business plan that enables them to bring their designs to the public. Each team also receives a stipend for their client’s project. They then present their final garments at a show in August and talk about their unique features for the disabled user if they choose to participate. But OSL does more than create clothing. They also raise awareness about adaptive clothing for the fashion industry through trade shows, the press, and events, such as OSL’s discussion panel at Yabu Pushelberg Studios. During the panel, Grace Jun and four other professionals discussed their experiences working with marginalized communities

AmeriDisability September-October 2018

10


and strategies to make businesses more inclusive. For OSL specifically, this means not only researching changing trends in adaptive clothing but learning to work with each of their clients’ abilities and situations while creating clothing. As passionate as team members are to work with disabled individuals, many have their first experience interacting with them day-by-day through the program and are amazed at how their perceptions change. As Kieran Kern said in our interview, “they realize [the disabled individual] isn’t just a set of symptoms. They’re a person. They have wants, needs, goals, [and] desires” like any human being. Thus, the team is transformed as they work with the client, and the client feels exhilarated from being themselves since their limitations aren’t seen as a problem but as something to work with—including the thrill of designing a garment that reflects their personality. With “style” in their name, Open Style Lab takes style very seriously as they design clothing with clients to ensure they’re representing themselves. To learn more, visit www.openstylelab.org, follow them on social media, or email them at hello@openstylelab.org.

11

AmeriDisability September-October 2018


AmeriDisability September-October 2018

12


Fashion

Two Models, Two Wheelchairs By Tiffiny Carlson It's no secret the fashion industry rarely represents real women. For years, they refused to deviate from their standard type - tall, skinny, white and able-bodied. This was always the status quo, but it’s finally changing. If you use a wheelchair, many assume you're not capable of doing anything, especially modeling. But two models, Nicki Donnelly and Samanta Bullock, have refused to let this stop them and want to change the way the industry represents beauty. Both have had success in the modeling world despite their disabilities. Read on for their stories below. Nicki Donnelly: Cop Turned Model Having a disability is nothing new to Nicki Donnelly. From the UK, she was born with Elhers-Danlos Syndrome, a gene disease that affects the joints. While she was still walking, she decided to become a police officer. She loved it, but in 2009, Nicki’s entire life changed when she was in a car accident and hit by a speeding car. She became a T7 paraplegic. Afterwards, she decided to look into modeling when she saw the positive affects it could have. And she saw success fast. "I made history in the UK pageant industry by winning Miss British Empire,” says Nicki. She uses her talents as a model and a motivational speaker and combines them with her story to empower women and young girls. Nicki is represented by Models of Diversity, a charity and modeling agency for models with disabilities. They represent talented models who break barriers in the fashion industry. “I have worked as a model for Apple in 2016, major wheelchair brand Invacare and was part of National campaign of UK’s BBC “Songs of Praise,’ and was a model during London’s F a s h i o n We e k i n S e p t e m b e r 2 0 1 6 . ” h t t p : / / www.nickidonnelly.co.uk/ and https://www.instagram.com/ nickidonnelly/

13

Nicki Donnelly

AmeriDisability September-October 2018


s: Both on a Mission for Change

Samanta Bullock: Once a Model Always a Model Samanta Bullock was a fashion model before her injury. Injured at the age of 14 in a shooting, she too hails from the United Kingdom. Samanta, a T12 paraplegic however, has been modeling for nearly her whole life. "My first fashion show was one I was eight years old and I was a professional model at the time of my accident." After her injury, she did not let it stop her from pursuing her modeling dreams either. "Few things chanced after my accident. The fact that I was in the sitting position didn’t make me feel any different. I have always liked fashion. I am sure it is one of the facts that helped me keep one. Upon moving to the UK, she signed with the modeling agency VisAble, another agency strictly for models with a disability. "I have done Fashion Shows around the word. The biggest was London Fashion Week. I have also done Fashion Finest. I am also an ambassador for Fashion Inclusivo In Brazil. I have modeled for Invacare, Peter Twiss, London Organic and a many more and I appeared on 4 magazine covers." www.samantabullock.com and https://www.instagram.com/samabullock/ Truly a long time coming, we hope the changes that all-inclusive models like Nicki and Samanta are hastening is here to stay.

Samanta Bullock

AmeriDisability September-October 2018

14


Fashion

Photo courtesy of American Heart Association.

A Little Fashion Accessory Makes a Big Fashion Statement By Nancy DeVault Sometimes a fashion statement isn’t just about being on trend. Sometimes it’s about a lifesaving mission… as with Little Hats, Big Hearts, a joint initiative of the American Heart Association (AHA) and The Children’s Heart Foundation. The campaign aims to address the nation’s number one birth defect, congenital heart disease, which affects about 40,000 births per year in the U.S. CHD includes abnormalities in the heart’s structure, electrical system and other anomalies that affect the heart’s function. Newborns first became hat-wearing fashionistas and fashionisters in 2014 in Chicago. “Volunteers harnessed the excitement of American Heart Month (February) and used their skills in knitting and crocheting to share the mission of the American Heart Association and The Children’s Heart Foundation with families welcoming new babies,” says AHA’s Communications Manager Alexson Calahan, adding, “The hats help educate families about heart health, and raise awareness about the prevalence of CHDs and other heart disease.” Little Hats, Big Hearts has since grown to include 1,000 hospitals in 41 states. In 2018 alone, more than 240,000 hats were distributed, most of which during February with additional distribution in May (in honor of American Stroke Month). Little Hats, Big Hearts is truly a labor of love led by volunteers who knit/crochet caps, organize packaging and facilitate disbursement. Aimee Hardy says the project was a perfect to “pay it forward.” Her son, Jack, was born with hypoplastic left heart syndrome, a defect affecting blood flow, and underwent his first of three surgeries at just 3 days old. “Thirty years ago, his condition was considered fatal,” Aimee says, “They would have sent us home and said to keep him as comfortable as possible.” Such cardiology advancements are, in part, thanks to AHA’s 15

research which, often, connects to awareness and fundraising campaigns. That’s why Aimee joined the Little Hats, Big Hearts committee in Utah and, through her association with Intermountain Healing Hearts (a support group for parents of children with CHD), she helped to supply 75 percent of the hats distributed in 2016! Alexson affirms that, in addition to raising awareness, the project also connects families affected by cardiovascular disease through the AHA’s Support Network, a free, online forum. And while the babies are the ones wearing the hats, she says the organization and its volunteers are empowering mothers as well. Jill Brees Barr attests, “I knew that I wanted to be involved [with Little Hats, Big Hearts] and hoped that my story would encourage moms to play an active role in their family's health and educate themselves on heart disease, the number one killer of women.” Jill was born with Wolff-Parkinson-White syndrome (WPW), a rare defect in which an extra electrical pathway between the heart's upper and lower chambers causes a rapid heartbeat. Non-symptomatic until her teenage years, Jill didn’t even know she had the condition. Then, the day came that she’ll never forget. Diagnosed with preeclampsia during pregnancy, she was at her obstetrician's office for a checkup. While her unborn baby was fine, the fetal heart monitor picked up Jill’s supraventricular tachycardia, a fast and irregular heartbeat. “The decision was made to life-flight me to a hospital with cardiology experts for delivery,” she recalls. Her son was delivered safely via caesarian and Jill would later undergo a surgical ablation to address the extra pathway. Since WPW is congenital, physicians will continue to monitor her son and evaluate

AmeriDisability September-October 2018


“The hats help educate families about heart health, and raise awareness about the prevalence of CHDs and other heart disease.� Photo courtesy of American Heart Association.

Pasadena Crochet Club AmeriDisability September-October 2018

16


Pasadena Crochet Club

potential symptoms. Already a volunteer, Jill was able to further advance the Little Hats, Big Hearts campaign and distribute hats after she was crowned Mrs. Iowa America 2017 with her volunteerism platform. She says, “I love the quote by John Holmes, ‘There is no exercise better for the heart than reaching down and lifting people up.’ The benefits of volunteerism are numerous and good for your mind, body and your community! Everyone has a gift that they can share with others and there are so many organizations that can benefit from that.” For Victoria L., motivation was also two-fold. She was 10years-old when doctors discovered she had bicuspid aortic value defect, a congenital condition which eventually led to a near fatal cardiac event. Following chest pain in 2015, doctors rushed the mom of two into open-heart surgery. Driven to empower others with lifesaving knowledge, Victoria jumped at the chance to put her crocheting skills to good use, especially in association with babies. “Babies are not a threatening way to get the message across; whereas, when people say ‘I had a heart attack and this can happen to you,’ it can feel threatening and scary. If we

17

share the message and symptoms with [the help of] a baby, people might be more inclined to listen because babies are sweet and anything but scary,” explains Victoria, who has constructed hats for newborns in Kansas City area. Even the youngest of do-gooders are helping too. Like at St. Philip the Apostle School in Pasadena, California, where a crochet club comprised of 10-12 year-old girls learn and practice the skill and, then, donate creations to Little Hats, Big Hearts. “The girls love to help others and have a passion for knitting. This was a lovely opportunity for them to combine two things that they love,” says Erin Delawari, mother of a club member. Jill offers, “Volunteering is fun, impactful and I encourage you to find a cause that you are passionate about and get involved.” To volunteer with the Little Hats, Big Hearts, contact your local AHA office.

AmeriDisability September-October 2018


In the Spotlight

One Dad’s Vision for Daughter’s Artistic Eye Patch By Nancy DeVault

Four-and-a-half year old Layla loves Ariel from Disney’s The Little Mermaid. Unlike her preschool classmates, she doesn’t just showcase her affection for the cartoon mermaid (and other beloved characters) through clothing; she also wears a customized character-clad eye patch hand-drawn every day by her dad, Geof Grubb of Gurnee, Illinois. Layla was born with a cataract in her right eye. The U.S. National Library of Medicine defines a congenital cataract as clouding of the lens of the eye (that’s present at birth). The lens is normally clear and focuses light that comes into the eye onto the retina. While cataracts are fairly common among the aging demographic, incidence is rare among children (affecting approximately 3-out-of-10,000) and it can hinder a child’s vision development. When she was about nine months old, Layla began wearing a patch over her left eye to encourage vision-strengthen of her right eye. “On the first day, we put the Band-Aid like patch on her and it was just kind of sad and boring looking. So, the next day, I decided to draw something on the patch. At the time, it was more so for me because she was too young to know,” admits Geof, who initially drew inspiration from his own interests, like comic books, superheroes and video games. The father of two has maintained the task of creating a unique patch every day which, on average, takes about 30 minutes. “We’ve done about 1,200 different patches,” he says. In the beginning, to keep things interesting, Geof never repeated a design but, now years later, he typically sketches different variations of Layla’s favorite things per her request. “It started off making it more fun for me, and now it’s made it a lot more fun for her since she’s now in on it,” he says. Aside from Ariel, Layla also likes other Disney princesses, Bat Girl, flowers, animals and many other playful and whimsical kid stuff. Surprisingly, Geof doesn’t have an artistic background; he’s a chemical engineer turned super creative stay-at-home-dad. And Layla isn’t his only fan! Geof has nearly 12,000 followers of Instagram (Layla’s Patches). But he says patch design is not a new career calling; rather, just a creative outlet and bonding opportunity to share with his daughter. While some small pediatric cataracts can be medically-treated by eye drops, eyeglasses and patching therapy, doctors weren’t satisfied with Layla’s vision progression and, in February 2018, surgically removed her cataract. Still, Layla must wear an eye patch for about three hours per day, perhaps until she is 8 to 10 years old (when vision development is complete). She typically wears the patch at home, rather than at school, because Geof says that allows him more control ─ after all, she’s a young kid and, at times, just doesn’t want to wear the eye patch. However, he also alludes to gazes and inquiries from others. Geof says people rarely question why Layla wears an eye patch but, overall, it’s always nice when someone offers praise for her cool eye patch instead of just a stare. He suggests, “If you see someone with an eye patch, maybe say something really nice to them. It helps to compliment the child!” Because, after all, kindness helps and heals us all.

AmeriDisability September-October 2018

18


Guest Interview

Angela Rockwood A Beautiful Role Model By Nancy DeVault

19

AmeriDisability September-October 2018


Angela Rockwood had put her “bad path” teenage years behind her. By age 26, she was on a positive track – newly engaged to actor Dustin Nguyen, content with her spiritually and launching an L.A. based acting career with small roles in The Fast and the Furious and the television series V.I.P. Then, in 2001, her life dramatically shifted. Following a wedding planning weekend, Angela and her two bridesmaids were driving back to Los Angeles from San Francisco. “I sat in the backseat and that little voice in my head told me to wear my seatbelt,” she recalls. However, eventually, she unbuckled to lean into the conversation. It was then that the car hit loose gravel on the mountainside road, spun out of control and flipped over the bank. “My head hit the back of the seat and compressed my C4/C5 vertebrae,” says Angela, who was ejected through the side-rear triangular window. She awoke to learn that her friend, actress Thuy Trang, best known for her role as the Yellow Ranger in the Mighty Morphin Power Rangers, tragically died in the crash. And doctors presented a diagnosis: Angela was paralyzed and given a 3-5% chance of regaining movement (odds she would later surpass). Angela says she knew from young age that if she could go out into the world and make a name for herself, she could possibly “be an example and make an impact.” But, waking up in the hospital was a defining moment regarding this vision. Angela says, “That little voice talked to me again and I instantly knew it was all for a reason. I survived.” She began rehabilitation and strived to positively motivate fellow patients; and also journaled about what she imagined for her future. “I knew that I could be a voice for so many and be a huge advocate because of the path I was about to embark on ─ being transported into the realm of the paralyzed,” she explains. As part of her recovery, Angela opted for stem cell therapy which she credits with restoring sensation to several body parts and, thus, allowing her to operate a manual wheelchair, feed herself, apply make-up, practice upper body martial arts and more. Her renewed strength energized a commitment to charitable work and forged partnerships with disability organizations, including the Christopher and Dana Reeve Foundation and Global Mobility.

5’9” beauty landed gigs with Maybelline, Nordstrom and Sony. “There are billions of people in the world with a disability and we’re consumers too. The fashion world would be ignorant if they didn’t tap into that,” she proclaims. “Beauty comes in all shapes, sizes, color, race, age and in every vessel,” says the now 43-year-old AsianAmerican entertainer. “We have to be the change! If you want change, you have to actually do something about it.” Push Girls aired for two seasons and won the Critics’ Choice Award in 2013. As she encountered professional milestones, she also entered new chapters within her personal life. Angela and Dustin divorced, though they remain friendly; and the self-described hopeless romantic found love again. Now, via her YouTube channel alongside “her man” Steven Profeta, she shares her perspective on relationships, sex and more. And, in Take a Look at This Heart, a documentary directed by Ben Duffy that explores romantic experiences of individuals living with disabilities, Angela shared more about her experience with love and personal relationships. She explains that she has four viewpoints from: 1) being able-bodied at one time and married; 2) being a quadriplegic and married; 3) being a quadriplegic and single in the dating world; and 4) being a quadriplegic and in a new relationship. In regards to her recent roles, in addition to working on the Royal Flush Crew for the World Poker Tour on Fox Sports Network, Angela’s filming Pen Pals (directed by Marem Hassler), portraying Ottilia, a sensual and powerful female character. “People in wheelchairs aren’t thought of as sexual beings, even though we are. Being paralyzed doesn’t change that,” she declares. Angela says she’s truly living the life she journaled about back in her hospital bed and is focused on leaving a positive mark. “Life is a gift and what we do with our life is our gift back to the world, to others and to ourselves,” she says, adding, “No matter what is going on in the person’s life, whatever catastrophic event you are going through, remember it is temporary and you can get through it. Remember who you are from the inside and do not lose that person. We all have the ability to make an impact!” Keep up with Angela via Instagram.com/ therealAngelaRockwood.

Soon thereafter, she eagerly returned to acting and modeling in hopes of combating stereotypes. “I’m all about putting the ability back in disability,” Angela describes. She proposed doing so with a “team of women warriors.” Following months of rejection from television networks, in 2012, SunDanceTV debuted Push Girls, a non-scripted reality series focused on the day-to-day trials and triumphs of Angela and her circle of ambitious, wheelchair-using gal pals. “We tried to share as much as we could about our world, and it wasn’t so much about the wheelchair,” she explains, adding, “I had no shame in putting the real back into reality!” That real included recording her daily care needs, like being bathed, catherized and dressed by her nurse; and dialing modeling agencies with her tongue. The AmeriDisability September-October 2018

Photo by Michael Hansel 20


Fashion

Target Hit the Bulls-Eye with SensoryFriendly Clothing By Ellen Callahan The first Target store opened in 1962 in Minneapolis and, in spite of rapid expansion, this retailer has maintained its objective to provide convenient, one-stop shopping with competitive or discounted price points. The chain has grown to include 1,829 stores in the U.S., ranking the brand among the top sellers nationwide. As part of their ‘corporate responsibility,’ the company has integrated diversity and inclusion into its culture to better serve both employees and customers. Target has a wide range of merchandise ─ housewares, toys, groceries, etc. ─ but many patrons especially love to shop the big-box store’s on-trend appeal, which has boasted collaborations with Alexander McQueen, Isaac Mizrahi, Lilly Pulitzer and other well-known designers. Target’s marquee clothing brand for kids, Cat & Jack, has sought collaborative input directly from consumers (even youngsters)! Designer Stacey Monsen and her Target colleagues learned that uncomfortable tags, seams and appeal detail make dressing troublesome for those with sensory-processing sensitivities. Even before receiving such customer feedback, Monsen knew of this from personal experience. She shared in an internal interview last year that her 7-year-old daughter, Elinor, who has autism, was not potty-trained and, thus, she typically purchased functional, not fashionable, garments in a size up. In August 2017, Monsen spearheaded a limited sensory-friendly collection (available online from $4.50 to $7 per item).

The 40-item assortment included outerwear with zip-off sleeves, footless sleepwear, diaper-friendly leggings and bodysuits and more. These garments are available at Target.com in sizes 2T-5T (Toddler) and XS-XXL (Big Kids) for $4.50 to $39.99. Target has also extended adaptive selections to women’s (Universal Thread and A New Day brands) and men’s (Goodfellow & Co), and is considering in-store availability. In 2012, Target made in-store shopping more accessible by offering Caroline’s Cart, a buggy designed to help parents and/or caregivers shop with older children or adults who have special needs without having to simultaneously maneuver both a cart and wheelchair. When Drew Ann and

“We first introduced sensory-friendly pieces within Cat & Jack that included three styles for girls (long-sleeve tee, short-sleeve tee and leggings) and two styles for boys (long-sleeve and short-sleeve tee). Since then, we have expanded to graphic tees, joggers, bodysuits, denim, jumpsuits, shorts, dresses, sweatshirts, swim, tanks and more,” says Target’s Corporate Public Relations Lead Danielle Schumann. “The fabric used in the sensoryfriendly pieces is the same extra-soft, comfortable, durable cotton knits used throughout much of the Cat & Jack collection,” she says, but with adapted features to minimize discomfort by using heat-transferred labels in place of tags, flat seams and one-dimensional graphic tees that don’t interfere with a child’s skin. In October 2017, Target expanded the line with additional adaptive apparel items featuring side and back snaps, zip closures, hidden openings for abdominal access and more. 21

Drew Ann & Caroline Long, courtesy of Caroline’s Cart

AmeriDisability September-October 2018


Target’s adaptive appeal design team, courtesy of Target.com David Long’s daughter, Caroline, who has Rett syndrome (a rare genetic condition that affects brain function), outgrow the standard shopping cart, they partnered with cart manufacturer Technibilt to empower retailers to better serve customers. Caroline’s Cart has a built-in seat that accommodates a person up to 250 pounds and faces the caregiver steering the cart. Aside from Target, Caroline’s Cart is available (at select locations) at Albertson’s, Best Buy, Kroger, Lowes, Publix, Sam’s Club and Wal-Mart, to name a few. It was Target’s advertising efforts, however, that first clued consumers into the company’s dedication toward diversity and inclusion. In 2012, then 6-year-old Ryan Langston, who has Down syndrome, appeared in the brand’s advertisements and weekly flyers. At the time, Target was among the most of prominent retailers to feature a model with special needs; though, the company did not call attention to this inclusion or attempt to solicit self-serving press. Schumann explains, “We’ve included people with disabilities in our advertising for more than 25 years. We purposefully cast the models in our marketing to reflect the diversity that we see in our world every day.” According to Schumann, Target’s “purpose is to help all families discover the joy of everyday life. This purpose and our core beliefs of diversity and inclusivity are reflected in our advertising and in our business overall. We believe diversity and inclusivity make teams and Target better!” As if shoppers needed yet another reason to love this store and go shopping…

Above, Below: Cat & Jack items, courtesy of Target.com

Cat & Jack’s adaptive appeal, courtesy of Target.com AmeriDisability September-October 2018

22


September Health

23

National Atrial Fibrillation Awareness Month

Childhood Cancer Awareness Month

National Food Safety Education Month

Healthy Aging Month

National ITP Awareness Month

Blood Cancer Awareness Month

National Cholesterol Education Month

National Childhood Obesity Awareness Month

Ovarian Cancer Awareness Month

National Sickle Cell Month

National Traumatic Brain Injury Awareness Month

Newborn Screening Awareness Month

World Alzheimer’s Month

Prostate Cancer Awareness Month

Polycystic Ovary Syndrome (PCOS) Month

Vohesu is a voice first digital transformation company focused on bringing our natural form of communication (voice) into our daily interaction with technology. We assist healthcare providers and doctors improve communication with their disabled patients by developing voice enabled applications, on Amazon Alexa and Google Home, to help patients: •

Understand their condition

Find local support services

Obtain medication information

Schedule appointments

October Health

Complete medical surveys

National Breast Cancer Awareness Month

And much more!

National Down Syndrome Awareness Month

Eye Injury Prevention Month

Health Literacy Month

Healthy Lung Month

National Dental Hygiene Month

National Medical Librarians Month

Sudden Infant Death Syndrome (SIDS) Awareness Month

Spina Bifida Awareness Month

Domestic Violence Awareness Month

National ADHD Awareness Month

Your patients have a voice, let them use it!

For inquiries, please complete the “Contact Us” section at www.vohesu.com.

AmeriDisability September-October 2018


AmeriDisability September-October 2018

24


Fashion

Aerie Undergarment Line Uncovers the Untouched Beauty of “Real” Women By Nancy DeVault

Photo courtesy of Andrew Buda and Alex Albeck | Aerie 25

AmeriDisability September-October 2018


Most people would agree that it takes guts to be photographed dressed solely in underwear… especially without airbrushing. Well, that’s exactly how scantily-clad models are posed in a campaign for Aerie, the subsidiary undergarment line of American Eagle. “As a brand, Aerie has been a leader in empowering women and celebrating inclusivity and body positivity since our launch of #AerieREAL in 2014,” Jennifer Foyle, Aerie Global Brand President, shared in a statement to AmeriDisability Services. “Our newest bra models are part of our brand’s ongoing commitment to show real, authentic and unretouched women who are at the core of everything that we do.” This cast, which made their campaign debut in summer 2018, includes women with varying disabilities, chronic illnesses and physical attributes not typically featured in mainstream advertising. To find these “real” representatives, the brand turned to social media and asked its community to share personal videos explaining why they wanted to be a part of #AerieREAL. Close to 2,000 women responded, according to marketing agent Matthew Owens. He explained that, “The women chosen for this campaign represent the inclusive beauty that makes up the DNA of the brand, which is committed to empowering all customers to embrace and love their real selves.” “I sent them a video saying how, as s o m e o n e w h o ’s n e v e r s e e n disability or chronic illness represented in media, #AerieREAL should mean that beauty comes in all shapes, sizes, ethnicities and abilities,” 20-year-old Abby Sams said in a HuffPost article. No stranger to video confessions, Sams shared via her YouTube channel that she experienced unexplained pain for years before finally being diagnosed with a chronic neuroinflammatory disorder and a connective tissue disorder. Landing the modeling gig was much easier to navigate! Posed in her wheelchair, Sams’ modeled a black lace bra. “I am PROUD to say I’ve

done this. PROUD to be a part of it. PROUD to be a model representing a community of disabled and chronically ill people. PROUD to be comfortable in my own skin,” she wrote on her Instagram page. “Being a model in a wheelchair for a major company is kind of a big deal and I want to be transparent about it all. Confidence is hard to come by and even harder to master.” Also for the campaign, Gaylyn Henderson donned a matching navy bra and boy-cut panty set along with her ostomy bag. She has Crohn’s disease, an inflammatory bowel disorder, and runs Gutless and Glamorous, an organization empowering people living with or contemplating ostomy surgery. Evelyn Ridell also wore a medical accessory: an insulin pump. The type 1 diabetic is photographed with her device clipped to a blue bra. Fellow #AerieREAL models include Jennifer Van Dusen, who describes herself as young and breastless after surviving breast cancer; Danielle Candray, who has alopecia, a hair loss condition; Lexus Morgan, who has vitiligo, a skin pigmentation condition; and Rajee Aerie (yes, Aerie is her last name and just coincidental to the brand), whose use of mobility crutches resulted from polio. And sports fans may recognize gymnast Chelsea Werner, who has Down syndrome, and is a four-time Special Olympics U.S. National Champion and two-time defending World Champion. Founded in 2006, the Aerie brand is geared toward younger women (teenagers and twenty-somethings), a demographic that often struggles with body confidence – regardless of whether one has a disability. The #AerieREAL campaign hopes to represent and empower women of all types and the general public is responding. One customer (Danielle @ddmarriee) explained via Twitter: “They demonstrated a wonderful commit to diversity in their models and I hope that this is a theme throughout the entire company. Wow. This is beautiful.” And we at AmeriDisability Services agree!

AmeriDisability September-October 2018

26


AmeriDisability

ANYWHERE - ANYTIME AmeriDisabilityOnline.com 27

AmeriDisability September-October 2018


AmeriDisability September-October 2018

28


29

AmeriDisability September-October 2018


AmeriDisability September-October 2018

30


The Beauty of Ms. Wheelchair America’s Mission to Serve

By Ellen Callahan

31

AmeriDisability September-October 2018


In the Spotlight In 1921, Miss America began as a beachside beauty pageant in Atlantic City. The winner took the crown and the runner-up received a swimsuit trophy. For nearly a century, the swimsuit portion remained in the competition; until, just this year, the Miss America Organization discontinued its inclusion in an effort to shift judging from outward appearances. Unlike Miss America and other traditional pageants, since its inception, Ms. Wheelchair America has never been about physical attractiveness but, rather, one’s inner beauty and impact. In 1972, Dr. Philip K. Wood, a Columbus physician, started Ms. Wheelchair Ohio with five participants. The effort was favorably received and, the following year, the national competition began. Ms. Wheelchair America f o c u s e s o n a w o m a n ’s experience with disabilityrelated advocacy and achievement. The organization is operated by dedicated, unpaid volunteers, like Shelly Loose. She became a quadriplegic following a car accident and, in an effort to break barriers and misconceptions, Loose committed to educating children about disabilities. “I was crowned Ms. Wheelchair Michigan 2007 and, when I came back from Nationals, I took over the Michigan program and have been my state coordinator ever since,” says Loose, who now serves as the Ms. Wheelchair America President.

disabled child found international success as a fashion model and soap opera actress as a young adult. However, during her thirties, her disability flared up. She suffered an aneurysm and, then, mobility issues caused by an arteriovenous malformation on her spinal cord. She opted for surgery but explains, “When I woke up, I couldn’t move my legs.” Nonetheless, Melander-Smith says her “life is better than it was before.” Thanks to Ms. Wheelchair America, she’s traveled all over the country to motivate people with disabilities to find their inner happiness. “The year that you spend as Ms. Wheelchair America is a year of exponential growth. You grow in ways that you just couldn’t even imagine because of the experiences you have and people you meet! It’s a gift,” she describes. After her reign, Melander-Smith will continue to serve as an advocate, motivational speaker and artist. She paints and contributes her work to nonprofits to use as fundraisers. Her website is sherimelandersmith.com. Aside from empowering women, Loose has been an inspiration for couples. “I married a quadriplegic man that I met in rehab! We have a great love story and had a daughter together,” she shares. Their love was actually celebrated on television when the couple won a contest to be married on Regis and Kathie Lee in 1993. Loose and her husband actually celebrate their “quadiversaries” (i.e. anniversaries of becoming quadriplegics) because that’s how they found one another.

Among other eligibility requirements, state participants must be a woman age 21+, use a wheelchair for Presently, 30 states align with 100% of her daily community Sheri Melander-Smith, Ms. Wheelchair America 2018 Ms. Wheelchair America. Loose mobility and, for Nationals, says volunteers are needed to fill the state participation gap. have earned a state title. “There is no age limit at the top. We Yet, a woman residing in a state without a program can apply actually just had an 81-year-old from Indiana,” Loose shares. as independent delegate. “One of our goals is to have all 50 However, it was 52-year-old Sheri Melander-Smith of states participating by our 50th anniversary. We have just three Minnesota who claimed the Ms. Wheelchair America 2018 years to achieve that,” Loose says. The Ms. Wheelchair crown with her platform: live your best life. “Life can throw America competition, which rotates host cities, is a weeklong you curveballs, and it’s not what happens to you but how you gathering of celebrations and workshops. Women also partake choose to respond to it that makes the difference,” declares in three judged sessions: 1) an intimate interview surrounding Melander-Smith, who’s faced various health conditions in her the understanding and impact of disability-related issues; 2) a lifetime. As a child, she underwent surgeries to correct uneven platform speech demonstrating communication and leg lengths and was later diagnosed with Klippel Trenaunay presentation skills; and 3) an additional (on-stage) question Weber syndrome, a condition that affects the development of portion. For more information, visit mswheelchairamerica.org. blood vessels, soft tissues (such as skin and muscles) and bones. Something she describes as “miraculous,” the once AmeriDisability September-October 2018

32


33

AmeriDisability September-October 2018


Purple Cat Hearing Aid Charms

PATTIandRICKY.com

AmeriDisability September-October 2018

34


MODELING & TALENT AGENCIES

The KMR Diversity Department specializes in character actors and models with diverse disabilities for Film, Television, Commercials, Theatre, Print and Live Appearances. www.kmrtalent.com

Mediability is a networking and marketing site established to showcase, connect and promote disabled people in the news, media, sports, arts and entertainment industries. www.mediability.pro

In addition to the everyday modelling assignments which are open to all disabled models, we have clients who want models to advertise disabled promotions or to sell specific disabled products.

www.modelsdirect.com

Models of Diversity is the campaign for more diversity in the models we see every day. http://www.modelsofdiversity.org/

Supplying diverse models and offering sensitive representation. www.zebedeemanagement.co.uk/ 35

AmeriDisability September-October 2018


SUBSCRIBE AmeriDisabilityOnline.com AmeriDisability September-October 2018

36


Untitled (P0544) Embroidery on stretched fabric 24”x24” unique 2018 Photo credit: NIAD Art Center

ELENA ROSSI Emerging artist, Elena Rossi, is obsessive when it comes to art. We mean really obseessive and in a great way…the level of detail in her work is beyond amazing. For awhile, Elena focused on works on paper, but recently has been working with embroidery. Elena Rossi creates her work at NIAD Art Center in Richmond, California. For more information visit niadart.org.

37

AmeriDisability September-October 2018


Treat Yo’ Self! If your mile-long “to do” list overshadows your selfcare, it might be time to step back and re-evaluate your priorities. Granted, we’re all busy with work, family, social obligations, and errands. But putting your physical, social, and emotional well-being first should always be non-negotiable. Need a boost to get back on track in the self-care department? Try these ideas:

Want to work with an experienced retailer? Adaptive Clothing Showroom has years of experience in the industry. Their affordable clothing is specially designed for bedridden individuals, wheelchair users or those who lack mobility.

••••••••••••••••••••••••••••••••••••••••••

• Hit “refresh” on your style. If you’ve had the same clothes for decades, it’s time for an update. While you don’t need to wear the latest runway styles, you should know what flatters you best. Need help? Hire an image consultant for expert insights. Or flip through a current magazine (targeting your age group!) to see the current styles. Besides clothes, could your hairstyle use a refresher? Try a new cut or color. Stuck with the same make-up routine? Get a free makeover at a department store cosmetics counter. • Eat clean. Ditch the soda and drink lots of water instead. Nix processed foods and stockpile your kitchen with fresh fruits and veggies, beans, nuts, and seeds. Cook from scratch a few times a week. No time? Hire a healthy meal delivery service. On the weekends, visit a farmer’s markets for local, seasonal produce. • Get connected. Face-to-face time works wonders for your mental health. Plan regular gettogethers with family and friends, even if you’ve got to schedule it like a business meeting. Invite family over for Sunday Brunch. Host a get-to-know-yourneighbors wine and cheese party. Make a standing Saturday morning coffee date with your mom. Meet friends for trivia night at a craft brewery. The sooner you adopt the “I-matter-most” mindset, the quicker you’ll get back on track with self-care.

Author’s Bio: Lisa Beach is a freelance journalist and copywriter. Her work has been published in The New York Times, Good Housekeeping, Eating Well, USA Today Go Escape Florida & Caribbean, Parents, and dozens more. Check out her writer’s website at www.LisaBeachWrites.com.

Retailers like Ovidis and AG Apparel also make it easy for disabled adults to stay fashionable. Custom tailoring is available in AG Apparel upon request.

••••••••••••••••••••••••••••••••••••••••••

KoolWay Sports creates warm, comfortable and accessible adaptive clothes for the outdoors. The KoolKoat is insulated with your choice of Drotex or PowderFill to keep you warm during the coldest time of the year. Their products are custom made to fit the user's body type and wheelchair requirements. They also include modifications like full zippered sleeves, half backs, zippered hoods, hidden G-J tubes and more. This way, you can enjoy the outdoors and live your life with the least amount of help and guidance.

••••••••••••••••••••••••••••••••••••••••••

ABL Denim specializes in making adaptive jeans for wheelchair users. When ABL Denim founder and designer Stephanie Alves found that jeans were often too tight to pull on and the rigid fabric irritated sensitive skin, she launched a hugely successful Kickstarter. ABL Denim now sells jeans with a higher back, soft and stretchy cotton, a variety of washes and soft fabric.

AmeriDisability September-October 2018

38


Guest Interview

39

AmeriDisability September-October 2018


A Make-Up Artist’s Beautiful Hands-Free Method By Nancy DeVault

Jessica Ruiz of Philadelphia says her childhood was challenging. She was born with arthrogryposis, a rare joint condition that limits mobility of her arms, hands, hips, knees and ankles. Aside from her physical disability, several family members battled drug addiction and, as a result, she was raised by her grandparents. And, even though she attended a school geared toward students with disabilities, Jessica was bullied by her peers. “There is, unfortunately, prejudice within the disabled community,” Jessica attests. The self-proclaimed tomboy teen started experimenting with make-up – mostly mascara, eyeliner and lip gloss – to boost her self-confidence and, surprisingly, her classmates noticed. “They saw I had a feminine side too,” she says, which somehow broke down barriers. Achieving her newfound ‘easy on the eyes’ look wasn’t exactly easy! Jessica couldn’t just lift her arms up to her face to apply beauty products as others do; so, she learned to adapt. “I lay a flat mirror and all of my products out on the bed. I hold the make-up brush with my left hand inbetween my ring finger and my pinky, leaning it between my thumb and index finger. Then, I bring my head down to the brush,” she describes of her routine. “I apply foundation with my hands and use an oversized beauty blender because it’s easier for me to hold.” A school friend asked Jessica to do her make-up for graduation photos. “I was scared because I didn’t know how to apply make-up to someone else without the use of my arms,” Jessica recalls. The solution: she held the brushes with her mouth. That was the turning point when Jessica realized that she had talent and the potential to become a professional make-up artist. “I started practicing on my little sister who, poor thing, walked around looking like a clown sometimes,” she admits. Following high school, Jessica applied to several cosmetology schools but, she says, was denied admission because of her disability. So, she invested in self-led training, “I spent hours and hours on YouTube studying tutorials… I call it YouTube University!” And her decision to get a tongue piercing was professionally-driven and not a punk-rock statement. “I put a brush between my front teeth and angle it to sit by my back molars. Then, my tongue and

the tongue ring maneuver the brush,” she says of applying make-up on others. Inspired by her grandfather’s favorite slogan, “Beauty is in the eye of the beholder,” Jessica started her own company, Dreamy Eyes Artistry, in 2008 to work as a make-up artist and consultant. “The only way to see someone’s true beauty is to look them right in the eye and see into their soul. To me, make-up is not to change you but to enhance what you already have,” she declares. Now 29 and married, Jessica is a successful make-up artist for fashion shows, theatre performances, individual clients (i.e. weddings, proms, etc.) and other gigs. She typically books four jobs per week, thanks to a large social media following. “A lot of clients see the outcome of my work in Instagram photos and book me. However, they may not necessarily realize how I apply make-up, so I always follow up to discuss the process,” she says, because models and other clients are not used to an artist working so closely (face-to-face) and holding applicators by mouth. Nonetheless, the results are stunning! Jessica also uses a wheelchair so she proactively communicates her accessibility needs. Because of her oral approach, Jessica’s make-up tools are “chewed up.” That’s why she wants to create a unique firm-grip, non-slip line of brushes. Plus, she’s interested in developing a cosmetic line of neon glow-in-the-dark products. “I envision that because I was born different and the make-up industry needs something different too,” says Jessica, who is now branching out from working with models to being a model. “I’m really interested in fashion modeling as well as boudoir. I feel like there aren’t enough disabled women who are completely comfortable with the skin they’re in. And we should be! Regardless of the amount of scars, each one [of us] tells a story... a story of strength.” Jessica hopes other people with disabilities will push pass their mental doubt which, she believes, is a greater hurdle compared to any physical limitation. “It doesn’t matter what our physical state is… As long as we have the mindset to do something or finish something through, we can do whatever we want,” she proclaims. Follow Jessica on Facebook and Instagram.

AmeriDisability September-October 2018

40


Writer’s Corner

How to Survive When Everything Falls Apart: Bend Don’t Break By Angela Clarke In 2012, after six years of joint problems and countless hospital appointments, I was diagnosed with Ehlers Danlos III. A rare degenerative connective tissue disorder, which leaves hypermobile sufferers prone to easy injury, dislocation and chronic pain, along with a panoply of multisystemic complications. There is no cure. Initially I was relieved to know what was wrong with me. It had a name. I wasn’t making it up. I really was sick. But I was too busy, having left a successful career in the fashion industry and launching my first book, to follow my consultant prescribed lifestyle management plan. I just did what I had time for. Something at work always came up, I hadn’t caught up with that old uni friend for ages, just one quick drink wouldn’t hurt, and that pile of washing wasn’t going to sort itself. But EDS is not a gym membership you can neglect. In April 2013 I suffered a major flare up and dislocated my neck. I was unable to walk, and my physio’s were fighting to get my body under control. Nothing worked. I was in agony. Hours became days, became weeks, became months. My world shrunk to my bedroom. My bed. My head. My whole world collapsed in on itself. I always thought I was strong: I associated with the person in the films, the stories, the newspaper articles, the one who doesn’t give up. The paralysed woman who against all odds walks down the aisle on her wedding day. The starving man who gives his last crust of bread away. The triumph over disaster. The hero. But my EDS III flare up didn’t just rob me of my mobility, it stole my personality. I was weak. Frightened. Angry. I understand now why those who suffer from chronic pain take their own lives. When nothing 41

AmeriDisability September-October 2018


works, nothing penetrates the darkness, there are no Hollywood clichés to fall back on. After weeks of blurred agony, my physio suggested my husband take me to a swimming pool. Supported by the water my body remembered what it was like not to hurt. For a few minutes the pain eased. That brief respite was enough. I was ready to fight. It was a long journey. After five months I could sit at my desk and type for one hour, three days a week. The rest of the time would be spent lying down recovering. At twelve months I hit the base level of fitness I’d been at before the flare up occurred. By that point physiotherapy had become a daily part of my life. I paced. I did my exercises. I soaked in Epsom salt baths. I watched what I ate and kept my weight down to avoid putting additional pressure on my joints. I used a walking stick when I needed to. Every action, every step, every movement was tempered by EDS III. I was terrified I’d find myself back in the prison of pain, and that this time I might not escape. But you can’t live in fear: it’s just another form of incarceration. I kept going, because there wasn’t another option. EDS III almost broke me, but it also made me more capable. Exercising is not about how I look in a bikini, it’s about how I walk. Physio is not a tiresome part of my day, it’s what underpins my work. Eating a nutritious diet isn’t a #wellness fad, it’s the building blocks of my daily life. I won’t moan that my bruised legs are ugly, I’m just damn thankful they work. I’ll put on a blue leopard print dress, and team it with my high top trainers. I’m still me, I just look after myself better. I’ve learned to say no. Doing everything risks everything: wearing myself out increases the chance of a flare up. I sometimes see people wasting time on those who take them for granted, or staying in jobs they hate, or being too scared to follow their dreams, and I realise I’m lucky. Having EDS III has taught me you have a limited amount of energy, a finite amount of time: use it wisely. I see friends and family who nourish me. I invest in my writing (my first novel, Follow Me has just been published!), my work, because it brings me independence, happiness, and fulfilment. You help no one if you’re mentally or physically wrung out. Be resilient. Be kind to yourself. Bend, don’t break. Keep going. Angela Clarke’s debut mystery novel Follow Me (Crooked Lane Books) is out now: https://www.amazon.com/FollowMe-Freddie-Nasreen-Mysteries/dp/1683315502/

Angela Clarke Angela Clarke is a screenwriter, broadcaster, and The Sunday Times bestselling author of the Social Media Murders. Her debut Follow Me was named Amazon’s Rising Star Debut of the Month, long listed for the CWA’s Dagger in the Library, and short listed for the Good Reader Page Turner Award. Angela has appeared on CBS Reality’s Written In Blood, on stage for BBC Edinburgh Fringe and on BBC News 24’s Ouch comedy special Tales From the Misunderstood. She hosts the BBC 3 Counties Radio show Tales From Yo u r L i f e , a n d t h e T h r e e B o o k s s h o w o n WomensRadioStation.com. Her multi-platform franchise horror screenplay LURE (co-written with Cal Moriarty) won the First Scene Screenplay Festival 2017, placed third in the Los Angeles Independent Film Festival 2017, and is a quarterfinalist in the First Blood Screenwriting Contest. She won the Young Stationers' Prize 2015 for achievement and promise in writing. A sufferer of EDS III, Angela is passionate about bringing marginalised voices into publishing. She is a Fellow of the Royal Society of Arts. Find out more about her here: www.AngelaClarke.co.uk

AmeriDisability September-October 2018

42


43

AmeriDisability September-October 2018


Untitled (P0197) Acrylic on canvas 24”x24” unique 2017 Photo credit: NIAD Art Center/SHRINE

BILLY WHITE As a young boy, Billy White was left in a coma after being hit by an automobile. When conscious again, doctors and his family realized that he had suffered a traumatic brain injury and would never recover full mobility. Mindful of his own injuries, Billy has mentioned numerous times feeling an affinity to Vincent van Gogh. He sees the artist’s unsuccessful romantic overtures and missing ear as similar to his own travails. Billy White works without hesitation, intuitively, and with complete freedom from the pitfalls of self-doubt and second-guessing; he is always “in the zone.” He often intermixes pop-culture icons such as Hulk Hogan and Fred Flintstone with surprisingly divergent subjects such as art luminary Picasso. White is also adept at giving new life to sometimes forgotten gems of African American culture such as Sanford and Sons and Red Foxx. All of his subjects are rendered with thick paint on canvas, markers and graphite on paper, or more recently three-dimensionally with clay to create raw and extremely evocative portraits. Billy White has been working at the NIAD Art Center in Richmond, CA since 1994, and is represented exclusively by SHRINE. For more information, visit niadart.org. AmeriDisability September-October 2018

44


In the Spotlight

Dolls with Disabilities Play Up Uniqueness

Courtesy of American Doll By Ellen Callahan Kids love playing with heroic toys, like firemen, astronauts and superheroes galore. While these characters certainly ignite imagination and joy, they can fail to showcase disabilities. All children should have access to toys that celebrate differences and, well, even resemble themselves. “Toys represent an important part of being a child. It's something they can often identify with and fosters growth, helping to build selfconfidence. When a character with a disability is part of the conversation, it leads to normalizing inclusion of diversity, better understanding and acceptance of all people in general,” suggests Nick Sabula, Public Affairs Specialist for the

Lottie Doll courtesy of Amazon National Council on Disability. In recent years, some manufactures have introduced inclusive toys… but there’s plenty of room for improvement.

Courtesy of Little Plain Jane, Etsy 45

American Girl was among the first toy brands to integrate disabilities. “We’ve been creating products for girls in special circumstances since we introduced our wheelchair for dolls in 1996. We’ve had various stories and books that have included girls with disabilities and girls dealing with unique circumstances,” says Stephanie Spanos, Senior Public AmeriDisability September-October 2018


Relations Manager for American Girl. The company has since introduced items like crutches, hearing aids, leg braces, service dogs, a diabetes kit (with insulin pumps, pens, glucose tablets and blood sugar monitor) and allergy-free lunch sets, in addition to dolls without hair in honor for those battling with cancer. For parents seeking look-a-like options that better align with their child’s uniqueness, independent toy makers offer solutions, such as Kayla Baker, owner of Little Plain Jane, an online store for customized, handmade dolls. “My 4-year-old daughter was the reason I first opened an Etsy shop and then started making dolls. She has autism and loves plush toys so, instead of buying her plastic baby dolls, I started making her plush dolls to snuggle,” Baker explains. One mother placed an order for a doll with a birthmark to resemble her daughter; Baker delivered. Soon after, similar requests flooded in and Baker found an unexpected niche. “I’ve created whatever moms have asked me to make and look forward to these opportunities,” she says. Baker has produced dolls with various birthmarks/hemangiomas, scars, eye patches, shortened and/or varied sized limbs and heterochromia (different colored eyes). Andrea Davis was thrilled to find Little Plain Jane and tailor a doll for her daughter, Bria. “We got the doll because we choose to give her laser treatments for her birthmark for medical reasons, and we want her to always remember what her mark looked like. Her birthmark is her, it makes her who she is, and we don’t want her or anyone else to forget that,” Davis explains. My Little Pony: Friendship Is Magic, a cartoon celebrating how the positive power of friendship can help one combat life’s challenges, and it’s figurines inspire people of all ages, says Matthew Palumbo, a self-described ‘brony’ who has degenerative eye disease. “Brony is a title for those who embrace the show that are out of the typical target demographic. It was because of the show – and fan animations – that I was able to cope with the fact that I was going to lose all of my eye sight and go totally blind,” he says, adding that it’s helped his son cope too. Palumbo says My Little Pony

Courtesy of Lego

Makeovers, courtesy of #ToyLikeMebethmoseleyphotography.co.uk subtly embraces disabilities, as with Scootaloo, who has shorter wings and does not fly, and Muffins (also known as Ditzy Doo and Derpy Hooves), who is cross-eyed. In 2014, a character named Stellar Eclipse appeared in the Trade Ya! episode using a wheelchair-like cart. The pony was designed with the Make-A-Wish Foundation by Sylvain-Nicholas LeVasseur-Portelance, who has spinal muscular atrophy type III. Palumbo also credits fans for creating characters with special needs. “Fans of all abilities like to write, do art, make music, etc. And I am someone in the arts and not being judged,” he says. For example, Snowdrop, a blind pony, is a fan-made

Makeovers, courtesy of #ToyLikeMebethmoseleyphotography.co.uk AmeriDisability September-October 2018

46


Bria with her doll from Little Plain Jane; courtesy of Andrea Davis animated short by Silly Filly Studios and written by Meredith Sims; however, it’s not officially associated with Hasbro, the manufacturer of My Little Pony. [The Hasbro website promotes “making play accessible,” including its involvement with The Autism Project, but the company did not respond to AmeriDisability Services’ inquiries.] “The disability isn’t made the core point of the story. You only hear that Snowdrop is blind once. It’s really about what a supportive mother can do for their child and that the disability is not defining,” Palumbo describes. He’s hosted “Coping with Disabilities through Pony” panels at BronyCon, an annual convention for My Little Pony fans. “I held four sessions at BronyCon to bring about how the show unites us all. It doesn’t matter if you are blind, deaf, on spectrum, etc.,” he says. “We’re brought together by the show because it gives us inspiration and makes us feel a part of a community. I share messages that relate to acceptance, understanding and empowerment.” The fact that individuals, versus big companies, offer solutions is somewhat frustrating to many, like journalist and creative consultant Rebecca Atkinson. She noticed the inclusivity gap and, so, in 2015, she and other parents launched #ToyLikeMe to “call on the global toy industry to start representing the 150 million disabled children worldwide.” The campaign went viral reaching over 40,000 followers on Facebook. While #ToyLikeMe does not manufacturer toys, they do “makeover” existing mainstream toys with “diff:abilities” which demonstrates how simple inclusion could be for toymakers. The website, ToyLikeMe.org, also shares a listing of “stereotype-busting toys,” like wheelchair-using figures by Lego and Playmobil. “Our biggest success to date is the creation of the Lottie Mia doll with a cochlear implant. This product carries our endorsement and we are very proud of her,” Atkinson says. In 2017, Lottie became first toy brand to official back the #ToyLikeMe campaign.

47

Other attempts have come and gone. Makies, a British toy company founded in 2012 which later applauded #ToyLikeMe, allowed kids to customize 3D-printed dolls, from personal traits (like hair types) to disability features and accessories (like birthmarks and a walking stick). In February 2017, Makies announced its closure on social media and, while reports speculated the company was acquired by Disney, the line has yet to re-launch. Mattel, perhaps the most popular doll creator, once produced Becky, a Barbie friend with a wheelchair. Sales were initially promising, until consumers discovered the wheelchair didn’t fit into Barbie’s Dream House; sadly, Mattel discontinued the Becky doll. Sabula says, however, there have been inclusive improvements but more so in other entertainment mediums versus tangible toys. “If you look at many of today's superhero and pop culture characters, especially from blockbuster movies, many of them have some form of disability. To name just a few: Professor Xavier of XMen uses a wheelchair, Marvel’s Doctor Strange has impairments in his hands and, a few years ago, Sesame Street introduced Julia, representing a 4-year-old girl on the autism spectrum,” he says. One out of every five people has a disability in the U.S., according to the Centers for Disease Control and Prevention, thus, Sabula declares, “Consumer markets definitely exist for more products featuring characters with disabilities, but it’s up to the industry to assess and respond to such markets.”

Makeovers, courtesy of #ToyLikeMebethmoseleyphotography.co.uk

AmeriDisability September-October 2018


Courtesy of American Doll

Courtesy of American Doll AmeriDisability September-October 2018

48


49

AmeriDisability September-October 2018


PATTIandRICKY.com AmeriDisability September-October 2018

50


Around Town September 23, 2018 5th Annual FUNclusion Sunday, September 23, 2018 German-American Society Hollywood, FL

September

September 8, 2018 Buddy Up Tennis at Red Bug Lake Park Red Bug Lake Park Casselberry, FL

September 29, 2018 Deaf Fest Florida Agricultural Museum Palm Coast, FL September 29, 2018 5th Annual Marion County Disability Resource Round-Up Early Learning Coalition Ocala, FL

October September 15, 2018 30th Annual Give Kids the World Village: Black & White Gala The Hyatt Regency Orlando Orlando, FL

September 22, 2018 6th Annual Dreamplex Gala & Auction Clermont Arts and Recreational Center Clermont, FL 51

October 12, 2018 2018 SUP Invitational Special Olympics- Monroe County Recurring Event SUP Invitational at Smathers Beach Key West, FL AmeriDisability September-October 2018


October 13, 2018 Truck Pull FUNdraiser Home Depot- Check in Point New Smyrna Beach, FL

October 28, 2018 Spirit of The ADA at the Jax Zoo & Gardens Jaxonville Zoo and Gardens Jacksonville, FL

October 13, 2018 3rd Annual Special Needs Family Resource Sanborn Activity Center Deland, FL

November

November 3, 2018 ASL Interpreted- The Jungle Book Orlando Shakes Orlando, FL October 13, 2018 Be A Buddy 5K and Fitness Expo Brevard County Wickham Park Melbourne, FL

October 19, 2018 Inspire of Central Florida - Masks & Martinis Heathrow Country Club Heathrow Country Club Lake Mary, FL October 20, 2018 20th Annual Step Up for Down syndrome Buddy Walk DSAF Washington Street Orlando Orlando, FL

November 5, 2018 Step Up- Pot Luck Wrap Up Party DSACF Success Center Winter Park, FL November 10, 2018 6th Annual Deaf Casino Cruise! Victory Casino Cruises Cape Canaveral, FL November 11, 2018 Give Kids The World Challenge For Hope Give Kids The World Kissimmee, FL

AmeriDisability September-October 2018

52


Adaptive Clothing Resources Adaptations by Adrian Adaptations by Adrian focuses on the seated individual with shorts, pants, capes, protectors, and other wheelchair accessories. Detailed measuring tutorials and video are available on their website to ensure a perfect fit when ordering. Based out of California, the company strives to meet any and all challenges of wheelchair users. www.adaptationsbyadrian.com

Easy Access Clothing The adaptive modifications of Easy Access Clothing was designed not only to meet special needs but to also encourage independence. The apparel is available for children and adults but the array of options offered are limited. Their products are all made in the U.S.A. and can be purchased from their website or through Amazon. www.easyaccessclothing.com

Ag Apparel Jordan Silver, founder and designer of Ag Apparel, is on the forefront of fashion to inform major retailers of the importance of universal apparel. She realized first-hand the difficulties faced from regular clothing for people with disabilities. Because of this, she has created a line of clothing made to fit every woman’s body type. All of the clothing made by Ag Apparel is Velcro free, comfortable, includes large button holes, dual zippers, and elastic waists. Clothes can even be custom made with the “Made 2 Measure” option. www.agapparel.com

Etsy Like Amazon, you can find just about anything on Etsy. The difference is the items on Etsy are handmade by people like you and me. With Etsy, items in every price point can be found and, most of the time, personalized to fit each individual. A recent search on this creative online community revealed pages upon pages of adaptive wear for all ages and all needs. The helpful reviews of each shop by previous customers will aid in peace of mind that what was ordered is what will be received. www.etsy.com

Amazon Amazon is a favorite among many individuals and families. With its shipping deals through the Prime Membership, friendly and efficient customer service, and wide selection of items to satisfy any need, it’s a viable option for stylish wear too. Take, for example, this MagnaClick dress shirt for men by Van Heusen. Instead of buttons, magnet closures are used for those with dexterity limitations. Available in many colors and patterns, the Open Back Top for women is perfect for the caregiver to assist. The possibilities are endless and customer satisfaction is guaranteed. www.amazon.com Buck and Buck Operating out of Seattle, Washington, Buck and Buck has been producing adaptive clothing made mostly in the U.S.A. for 39 years. They give customers the ability to personalize orders and offer flat shipping for $9 in the lower states and $19 for packages shipped to Alaska and Hawaii. The clothing lines are geared toward adults and include footwear. Their “Shop by Need” option on the website allows customers to find solutions tailored to their exact disability. The company also offers personal shoppers at no extra cost. They realize their plethora of options would be time consuming and tedious to sort through. By providing personalized remarks in the comment section of the order (“I love red designs” or “I am not a fan of floral prints”), staff will ensure you adore the clothing you receive. And if you don’t, simply return it in its original condition for a full refund. www.buckandbuck.com

53

MagnaClick shirt advertisment by Van Heusen

AmeriDisability September-October 2018


Silvert’s Women’s Adaptive Open Back Top

Silvert’s Adaptive Clothing and Footwear Silvert’s was originally opened in 1930 as a general clothing store. As the regular customers began aging and requiring special clothing for their needs, Silvert’s apparel evolved into what it is today. Providing an array of clothing for disabilities and special needs across a broad spectrum, the company is continually conversing with customers and caregivers to provide the latest designs while meeting customer needs. The “What’s New” section keeps customers informed on the latest pieces, such as, wheelchair jeans or disabled veteran clothing. There is also a resource and tip section with videos to simply life just a little. www.silverts.com JLine Fashions For the young professional or career-minded adult, take a look at Silvert’s special line, JLine Fashions. This line offers fashion and functionability. The website claims their quality and style wheelchair jeans are the best on the market. Offering a high back, low front, and no pockets or back loops to cause pressure sores. The dress shirts for men and women are magnetic closure for no-fuss dressing. Style is not lacking from this specialty apparel. www.jlinefashions.com Tommy Hilfiger Tommy Hilfiger is a staple in fashion providing a classic style that is also comfortable. Not only is the brand a sponsor for Special Olympics, but Hilfiger has teamed up with the organization to bring the innovative line of Tommy Adaptive. This line was created to make dressing easier for those with special needs while allowing the individuals to express their unique self through fashion. The line is extensive and covers men, women, and children. https://usa.tommy.com/en/tommy-adaptive

Target advertisement Target Breeze through daily dressing with the many clothing options at Target. The adaptive clothing collection will cover the teeniest tot to the manliest man. There are hidden openings in pants and tops, wider pant legs, and sensory-friendly pieces with no tags and flat seams. For an added bonus, they are affordable too, fitting any budget! Something lacking in the current market. Items can be shipped straight to the front door or to the nearest store. www.target.com Zappo’s Adaptive Deriving from a frustrated customer who has a grandson with autism, Zappo’s began a journey of education and research to bring trendy clothing options to people of all walks of life. Thus, Zappo’s Adaptive was brought into existence. The newly created line features a range of fashion options from reversible clothing to sensory-friendly styles to easy on-off shoes. A few of the special products offered are PBS Kids playful designs, BILLY Footwear, Independence Day options for independent dressing, and PLAE shoes for kids. www.zappos.com/e/adaptive

BILLY Footwear Kids Classic High Jersey with FlipTop technology by Zappos

AmeriDisability September-October 2018

54


AmeriDisability  

America's publication for the disability community.

AmeriDisability  

America's publication for the disability community.