What It’s Like Living and Working With a Chronic Illness

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woman writing in journal about managing chronic illness and work

By Alex Haagaard

It’s 6 AM and your alarm is going off. You hit the snooze button, hoping for a few more minutes of sleep before you drag yourself out of bed. This is a morning routine most people are familiar with. But for workers with chronic illness, it can look very different.

Five years ago, I was working as a research assistant at a design school. I was also struggling with several undiagnosed illnesses, including narcolepsy, an immune condition, and a painful connective tissue disorder. Every night I’d set twelve alarms, turn the volume up, and plug my phone in on the other side of my bedroom. And every morning I’d sleep through them all. I started every day feeling like I’d already run a marathon and been hit by a truck as I crossed the finish line.

Why It’s So Hard to Work With Chronic Illness

In many cases, chronic illness limits how much you can get done in a day. You start with limited energy levels, and when you add in things like chronic pain and immune problems, everyday tasks can drain your batteries before you even get to work. (Not to mention that doctors’ appointments and endless phone calls chasing after prescriptions and referrals can take hours out of your day.)

Learning to manage your energy levels is essential when living with chronic illness. You get used to checking in with your body, assessing how much any activity will cost you, and creating a kind of energy budget to figure out exactly what you can get done without pushing your body past its breaking point. But what happens when there’s just no way to balance the budget?

This is a huge challenge in workplace cultures that place a premium on constant productivity. Chronically ill employees often end up going into energy debt trying to keep up with what’s expected of them. Pushing your limits is often seen as a way of committing to your own personal development, but it can have a serious negative impact on your personal life and health, especially if you have a chronic illness.

Caitlin has fibromyalgia and currently works from home, but she used to work in retail. “My quality of life at the time was non-existent,” she says. “I couldn’t do anything except lie in bed or on the couch when I wasn’t at work. I couldn’t even job hunt because the pain and fatigue were so severe that I couldn’t think straight. I ended up quitting with nothing lined up.”

Chronic illness is also unpredictable. It’s one thing to manage your finances when you know how much money is coming in every month, but as any freelancer will tell you, making long-term plans becomes a lot more difficult without that certainty. Similarly, when you’re working with chronic illness, you often find yourself in a position of having to create weekly or monthly energy budgets without knowing what resources you’ll have at your disposal from one day to the next.

No, We’re Not Just Lazy and Incompetent

When your illness is invisible, you often face doubt from colleagues. Laura, a middle school teacher with an immune disorder, also struggles with PTSD because of harassment she faced at her previous job.

“I was told I was being ridiculous and overdramatic, that I was ‘letting kids down and setting a bad example’ by not pushing myself,” she says. Even after leaving that job, that experience continued to impact her work relationships. “It took probably five years in my current position before I didn’t have anxiety attacks if my boss needed to speak to me or I needed to speak to my boss about something.”

When you’re chronically ill, it often feels like doubt rules your life. People doubt that you’re sick. They doubt how hard you’re trying. They doubt that you’ll follow through on your commitments. And eventually, you begin to doubt yourself.

“To be uncomfortably honest, I am probably more disappointed in myself than [others] are,” says Kristina, a designer and digital modeler who has epilepsy. Struggling with even the most basic adulting tasks can leave her riddled with self-doubt, she explains: “One day I am fully capable of a task while the next day I struggle with generally simple things like brushing my teeth or getting dressed.”

When your abilities change so dramatically from one day to the next, you can end up questioning your own grip on reality. You know none of this is your fault, but deep down you can’t help but wonder if maybe, somehow, it is.

How I’ve Made Working, Work For Me

Three years ago, I had to stop working in my chosen field so that I could begin working full-time as a patient. And it was work, even though I wasn’t getting paid for any of it. My weekdays were suddenly filled with doctors’ appointments, lab tests, and phone calls to social services. I essentially had to become an administrative assistant to the six clinics I was dealing with, a biomedical researcher, and a health justice advocate. Just like my previous jobs, I often felt like I was just barely treading water, trying not to drown.

Last spring, I finally received the diagnoses I was fighting for and this fall, I went back to work as a consultant with a disability-led design group. Although I expected to feel overjoyed about returning to paid work, I’d become so used to struggling and failing that for weeks all I felt was terror.

But I’m still there, loving the work and starting feel more confident that I can actually do this. I’m also realizing that my experiences with chronic illness can be an asset. They’ve made me conscientious about time management, connected me to an amazing community of disabled creatives, and given me insights into how public systems and services are designed—for better and for worse.

Here are three key things that have helped me succeed in my new job:

Continue on to The Muse to read the complete article.

Netflix Series About Teen On The Spectrum Poised For New Season

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Atypical stars stting in a car having a talk

A television show centering on the coming-of-age experiences of a teenager with autism is set to return. Netflix says that it will debut a third season of “Atypical” next month.

The series stars Keir Gilchrist as Sam, a 19-year-old on the spectrum who’s seeking love and independence.

“In season three, Sam starts his first year of college and is faced with the challenge of figuring out what success means for him, while adjusting to the changes that come with growing up,” Netflix said.

Gilchrist does not have autism in real life. But, the show did feature five characters played by actors with the developmental disorder during the last season.

In addition, Netflix previously said it has consulted with experts including a special education professor and a self-advocate to ensure that the half-hour show offers a realistic portrayal of life on the spectrum.

Continue on to Disability Scoop to read the complete article.

National Disability Employment Awareness Month 2019

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The Right Talent, Right Now official poster for NDEAM with their website and pictures of people with disabilities at work

Reflecting a commitment to a robust and competitive American labor force, the 2019 National Disability Employment Awareness Month (NDEAM) theme is “The Right Talent, Right Now.”

The 2019 NDEAM theme emphasizes the essential role people with disabilities play in America’s economic success, especially in an era when historically low unemployment and global competition are creating a high demand for skilled talent.

Observed each October, NDEAM celebrates the contributions of workers with disabilities and educates about the value of a workforce inclusive of their skills and talents.

NDEAM dates back to 1945, when Congress declared the first week in October “National Employ the Physically Handicapped Week.” Learn more about the origins and evolution of NDEAM and other important events in disability employment history in their timeline.

What can YOU do to celebrate NDEAM? There are lots of ways! To get started, see the 31 Days of NDEAM slideshow :

The Office of Disability Employment Policy (ODEP) offers a range of resources to help organizations plan NDEAM observances, including not only the official poster in English and Spanish, but also sample articles, a press release, proclamation and social media content.

For information, visit the Department of Labor here.

Superfest Disability Film Festival 2019

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Man with prosthetic hand holds up sign for Superfest Disability Film Festival

With over 160 film submissions, only fifteen films were selected by our panel of judges, all of whom are prominent members of the disability community. Among the films you will enjoy this weekend there are short and full-length features including documentaries, comedies and daring dramas. In fact there are even five thought-provoking animated shorts to be screened. The films are global, from Iran, Germany, Australia, India as well as from right here in the Bay Area.

But Superfest is more than a film festival, it’s an annual community gathering and celebration. Thank you for joining us to experience the power of film, people telling their own story with creativity, beauty and emotion. Film is one of the most nuanced ways that important subjects can be brought to the forefront.

This is the 33rd festival celebrating under-told stories of people with disabilities. For the past seven years San Francisco State’s Longmore Institute on Disability and LightHouse for the Blind and Visually Impaired have partnered to jointly coordinate and expand Superfest. In these years Superfest has expanded, not only growing the two day festival each fall, but bringing Superfest’s films and philosophy to locations across the Bay Area, country and globe.

Superfest Disability Film Festival

-Saturday, October 12 – Freight & Salvage (2020 Addison St. in Berkeley) at noon
-Sunday October 13 – Contemporary Jewish Museum (736 Mission St. in San Francisco) screenings at 11 am and 2 pm

SUPERFEST PRODUCERS
THE PAUL K. LONGMORE INSTITUTE ON DISABILITY at San Francisco State University envisions a society where everyone believes the world is better because of disabled people. We study and showcase disabled people’s experiences to revolutionize social views. Through public education, scholarship, and cultural events, the Longmore Institute shares disability history and theory, promotes critical thinking, and builds a broader community. Learn more: longmoreinstitute.sfsu.edu

LIGHTHOUSE FOR THE BLIND AND VISUALLY IMPAIRED provides deep learning, skills training, advocacy and community for blind individuals in California and around the world. Founded in 1902 in San Francisco, the LightHouse is one of the largest and most comprehensive blindness organizations in North America, with programs for blind and low vision people of all ages. LightHouse is a proud champion of Superfest. Through Superfest LightHouse continues the traditions of the rich history of Bay Area disability groups in promoting the rights and interests of disabled people.

Blind engineer builds a SMART cane that has Google Maps, Bluetooth, and a sensory device

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Blind engineer poses with his smart cane and a group of people smiling and pointing to him

In today’s age of advanced technology, a lot of devices, gadgets, and programs are built to make our lives easier and more convenient.

While the more recent innovations were designed for entertainment, some companies are taking technology to the next level by incorporating a high level of help and hopefully, to make a difference to the lives of people who need it the most.

Unfortunately I cannot name a single city as a perfectly disabled-friendly city that is why we are trying to provide this independency for visually impaired people” shared Ceylan on CNN.

The WeWALK smart cane was born from a visually impaired engineer named Kursat Ceylan. He is also the CEO and co-founder of a non-profit called the Young Guru Academy (YGA), the one responsible for making WeWALK come to life. As someone who faces the daily challenges of being blind, Kursat Ceylan knew the limitations of the current technology that people like him have to make do of. Knowing this, he created the WeWALK in hopes of changing the lives of the blind.

This innovative cane includes a built-in speakers, voice assistance, Google Maps, a Bluetooth system that makes syncing to other devices possible, and high-end sensors that alerts the user through vibrations when above chest level obstacles are within proximity—something a regular cane cannot provide.

In these days we are talking about flying cars, but these people have been using just a plain stick,” he explained to CNN. “As a blind person, when I am at the Metro station I don’t know which is my exit… I don’t know which bus is approaching… which stores are around me. That kind of information can be provided with the WeWalk.”

Continue on to Positive Outlooks to read the complete article.

Teacher Carries Student With Spina Bifida On His Back So She Won’t Miss Out on Class Field Trip

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Teacher carries disabled student in a specialty made backpack

A Kentucky teacher is being hailed for going above and beyond the call of duty to bring a disabled student along on their field trip.

Ryan Neighbor’s fourth grade class at Tully Elementary School had been preparing to go on a field trip to Falls of the Ohio State Park last week—and she was heartbroken over the prospect of missing out on the fun.

Since the 10-year-old youngster was born with spina bifida, she has relied on a wheelchair her entire life. This is not the first time that Ryan’s disability has prevented her from attending field trips in the past, so her mother Shelly King began “preparing for an ‘alternate field trip day.’”

Thankfully, she didn’t have to. Upon hearing about Ryan’s plight, elementary school teacher Jim Freeman contacted the family “out of the blue” and offered to carry Ryan around on his back for the entire field trip.

True to his word, Freeman used a specialized backpack to carry the 55-pound youngster on his back across the park terrain—and Ryan was thrilled.

Since her mother shared photos of Freeman and Ryan on the field trip, they have been shared thousands of times.

Continue on to the Good News Network to read the complete article.

North Carolina Deputy Lauded For Buying Disabled Woman’s Gas

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Officer pumping gas into a car

A North Carolina sheriff’s deputy is receiving praise on social media for buying a tank of gasoline for a disabled woman who didn’t have enough money to fill up her car.

The Winston-Salem Journal reports Forsyth County sheriff’s deputy Chris Owen said he was checking on security at a Sheetz convenience store in Winston-Salem around 3 a.m. Sunday when a woman asked him to pump her gas.

Owen, a seven-year veteran of the department, said the woman gave him $8. But he figured that wasn’t enough to get her where she needed to go, so he put the nearly $39 purchase on his credit card and gave the woman her money back.

By Tuesday afternoon, Owen’s story had more than 8,000 reactions and 1,200 shares on Facebook.

Information from: Winston-Salem Journal, journalnow.com

Marilee Talkington stars alongside Jason Momoa in Apple TV+’s upcoming futuristic, post-apocalyptic drama “See”

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Apple TV Movie poster with images of Marilee Talkington and Jason Momoa with the word "SEE" printed on it

A lifelong advocate and a voice for other actors that are also visually impaired, Marilee Talkington will be lighting up television sets alongside Jason Momoa (“Game of Thrones,” AQUAMAN) in Apple TV+’s upcoming futuristic, post-apocalyptic drama “See,” premiering Friday, November 1st.

Legally blind herself, Marilee will be playing more than just a role in a show, but a pivotal role in the fight for authentic casting and representation.

From the producers of the PLANET OF THE APES Trilogy, written by Steven Knight (“Peaky Blinders”) and directed by Francis Lawrence (THE HUNGER GAMES: CATCHING FIRE and MOCKINGJAY PARTS 1 & 2), “See,” tells the story of a future where a virus has wiped out most of mankind, leaving the survivors blinded. Marilee stars as “Souter Bax,” an emotionally complicated character, authentically representing the blind community. In addition to Jason Momoa, the show also stars Oscar-nominated and Emmy-winning actress, Alfre Woodard (12 YEARS A SLAVE, CAPTAIN AMERICA: CIVIL WAR) and Archie Madekwe (MIDSOMMAR).

Marilee also spends her time as a consultant for TV shows, films, theater, university, and conservatories for authentic casting and representation on stage and screen. She has even created an acting program for authentically blind/low vision actors and is heavily involved in SAG-AFTRA Performers with Disabilities Committee, as well as 50/50 by 2020. Marilee even went viral in 2017, being featured for HuffPost and the Observer, when at a panel for the World Science Festival, a female panelist kept getting cut off by the male moderator, Marilee jumped in from the crowd asking him to “Let her speak, please!” Passionate about her activism, she is fighting for those around her and coming after her.

Born with cone-rod dystrophy, a retinal disease she had inherited from her mother, Marilee had no central vision, and learned how to not just survive, but thrive. Heavily involved in basketball throughout high school, even earning herself a spot on the CA All-Star team, Marilee could not play in college as her sight continued to deteriorate. While studying Psychology, she took an acting class on a whim and fell in love immediately. Moving from Los Angeles to San Francisco, she worked hard, honing her craft before attending the American Conservatory Theater, graduating with honors as one of just a handful of legally blind actors in the country with an MFA in Acting.

WATCH THE TRAILER!

Following school, Marilee took to writing and directing groundbreaking plays, including “Sticky Time,” a show that took place around the audience, rather than the usual format, and “Truce,” (shown in San Francisco, New York and the BBC), in which Marilee played 22 different characters. ”Truce’s” cutting edge aspect was its set design as it paralleled her own vision loss so that audience members could viscerally experience what it might be like for her. In all her productions, Marilee aims to break apart the normative theatrical viewing experience and create highly visceral and experimental story-telling moments. She innovates new aesthetics to integrate her specific physical experience of the world into each show.

Since then, she has starred in NBC’s “New Amsterdam,” CBS’ “NCIS,” and countless theater productions, both Off-Broadway and Regional. In the past 25 years, she has originated over 60 characters including lead roles in world premieres by Daniel Handler (a.k.a. Lemony Snicket) and Lauren Gunderson (most produced playwright in the US, 2017).

Photo Credit: David Noles

Kodi Lee, Singing Phenom Who Is Blind and Has Autism, 22, Wins America’s Got Talent Season 14

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Kodi Lee performs on America's Got Talent

Kodi Lee is the winner of America’s Got Talent!

After weeks of competition, Lee has been crowned the champion of season 14. On Wednesday’s episode, the star bested fellow finalists opera singer Emanne Beasha, violinist Tyler Butler-Figueroa, dance troupe Light Balance Kids, singer Benicio Bryant and Ndlovu Youth Choir.

Quartet Voices of Service (fifth place), dance troupe V. Unbeatable (fourth place), comedian Ryan Niemiller (third place), and the Detroit Youth Choir (second place) made it into the top 5.

In addition to the honor of being the winner, Lee takes home $1 million and headlining shows from Nov. 7-10 at Paris Las Vegas Hotel & Casino in Las Vegas.

Lee immediately captivated the audience and judges with his viral audition during which he blew everyone away with his rendition of Donny Hathaway’s “A Song for You.” Gabrielle Union was so impressed that she gifted the 22-year-old singer with her Golden Buzzer.

Along with his unforgettable vocal talents, Lee’s life story has made him a fan favorite. The Lake Elsinore, California, native was born with optic nerve hypoplasia and diagnosed with autism at age 4. His mother Tina accompanied him on stage for the entire competition.

“He’s making people believe in something they didn’t even know is attainable. He’s magic,” Union previously told PEOPLE of Lee.

Continue on to People to read the complete article.

Comcast Partners With The American Association Of People With Disabilities To Help Close The Digital Divide

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woman suing computer with internet access smiling

At the Newseum recently, Comcast announced a series of initiatives designed to help address the digital divide for low-income Americans with disabilities through the Internet Essentials program, the nation’s largest and most comprehensive Internet adoption program for low-income households. 

The largest of these was a grant from the Company to the American Association for People with Disabilities (AAPD).  The Comcast grant will help fund the creation and delivery of digital literacy training programs specifically designed to address the needs of low-income people in the disability community.  Once developed, the programs will be delivered at 10 AAPD affiliates across the country, as well as shared online for anyone to access.

According to Pew Research Center, 23 percent of people with disabilities say they never go online and 57 percent say they do not have a home broadband subscription.

The grant follows last month’s announcement that, since 2011, the Internet Essentials program has connected more than eight million low-income Americans to the Internet at home, including nearly 210,000 in the greater Washington, D.C. metro area, 90 percent of whom were not connected to the Internet at home until they signed up through Internet Essentials.  In addition, the company made the most significant eligibility change in the program’s history, expanding eligibility to all low-income households residing in the Comcast service area, including all low-income seniors, adults, and people with disabilities.

“The Internet is an incredible resource so long as you have the skills and the tools to use it,” said David L. Cohen, Senior Executive Vice President and Chief Diversity Officer at Comcast Corporation.  “By partnering with AAPD and working with the disability community, we want to address and break down the barriers to broadband adoption that are unique to this population.  The first step is to address digital literacy issues and facilitate digital skills development.  So, we’re going to create relevant training programs and then fund their delivery at locations across the country.”

“Having an Internet connection at home is absolutely vital for low-income people living with disabilities,” said Maria Town, President and CEO of the American Association for People with Disabilities.  “I commend Comcast for extending its Internet Essentials program to people with disabilities because it will help us advance our mission to provide equal access, integration, and full inclusion for Americans with disabilities.”

In addition, Comcast held events across the Washington, DC area to raise awareness of the digital divide with special guests Paralympic Gold Medalist and Purple Heart Recipient Rico Roman, and Olympic Gold Medalists from the U.S. Women’s Hockey Team Jocelyne Lamoureux-Davidson and Monique Lamoureux-Morando.

As part of the day’s events, the Company held a digital literacy assembly at Walker Jones Elementary, where Cohen surprised 50 sixth graders with free laptops and six months of complimentary Internet Essentials service.  The company also hosted a digital inclusion event at the Hattie Holmes Senior Wellness Center where 100 seniors were given free laptops to help them stay connected to family and friends in the 21st century way of life.  Lastly, Comcast held a Youth Hockey Clinic with Roman, Lamoureux-Davidson, and Lamoureux-Morando, where the Company surprised 25 students from Cornerstone Schools in Ward 7 with free laptops to help further their education.  In partnership with Dell Technologies, the companies provided new equipment to Friends of Fort Dupont Ice Arena for its computer lab.

Internet Essentials has an integrated, wrap-around design that addresses each of the three major barriers to broadband adoption that research has identified.  These include: a lack of digital literacy skills, lack of awareness of the relevance of the Internet to everyday life needs, and fear of the Internet; the lack of a computer; and cost of internet service.  The program is structured as a partnership between Comcast and tens of thousands of school districts, libraries, elected officials, and nonprofit community partners.

Source: Comcast

20-Yr-Old With Autism Conquers “American Ninja Warrior” With Unmatched Enthusiasm

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Brian Burke swing across obstacle course on Ninja Warrior stage

Like many individuals on the autism spectrum, Brian Burk can find it hard to connect with others. The Pasadena, California native is undeniably intelligent, but he struggled to find his way socially and often chose staying at home and studying over spending time with other people his age. But once he discovered the show “American Ninja Warrior,” that started to change.

On “American Ninja Warrior,” all kinds of people compete on various obstacle courses in an effort to reach Mount Midoriyama. Contestants are often larger-than-life personalities who push their bodies as far as they can go. And the moment Brian saw his first episode, he knew he had what it takes to become one of them.

Brian began exercising three times a week to increase his strength and stamina. The very act of leaving his house and interacting with others at the gym helped him break out of his shell. He became more social with each passing day. By the time he competed in the Los Angeles City Qualifiers in 2019, he was more than ready to show the world what he could do!

The now 20-year-old is pursuing a college degree in aerospace engineering and immediately inspired the ANW crowd with his powerful journey to becoming a ninja warrior. They can be seen cheering loudly as he approaches the jaw-dropping obstacle course.

In the video, we see Brian’s parents, Thomas and Pamela Burk, jumping up and down on the sidelines as their son repeatedly lands his moves. He flings his body through the air and ignores the weariness in his arms as he muscles his way up the intimidating Mount Midoriyama to successfully complete the course.

“This means everything to me! I’m so thankful!” Brian tells the show’s hosts. Then he celebrates by doing a full split on top of the mountain… because why not? If you’ve got it (and Brian certainly does), flaunt it!

Continue on to InspireMore to read the complete article.