Category: Living with Disability

It’s not news that people with disabilities encounter significant obstacles in their attempts to find employment. Increasingly, parents of young adults with disabilities are finding ways to create vocational opportunities for their children by starting their own businesses and hiring their children and others with disabilities. Through these enterprises, individuals with autism and other developmental disabilities gain valuable work experience while also being gainfully employed in an area where they have interest.

In January 2021, Malinda Dawson-Cook started Paige’s Pantry, a nonprofit based in North County, San Diego, where her daughter Paige, a 19-year-old teen with autism and a love of fruit picking and gardening, is now employed. Paige’s Pantry provides produce to food insecure families in the North County area while it also trains young adults on the autism spectrum.

Paige, who is mostly nonverbal, has been a student at TERI Inc.’s The Country School in San Marcos, since she was 12. The school focuses on social and vocational training rather than academics and Paige has made good progress there. Her favorite activity at school is tending raised garden beds at a group home affiliated with the school.

As Paige’s teacher, Meghan Hoppes told Pam Kragen of the San Diego Union-Tribune she was impressed with Paige’s focus and work ethic. “Paige is really industrious,” Hoppes said. “She likes to work, she works hard and when she completes a task, she moves on to the next one. She’s a take-charge sort of person.”

But when the pandemic hit, Paige’s gardening and socialization training were interrupted. So, Hoppes, an Escondito, California, resident, invited Paige and her mother to come to her house to pick fruit from her orange, lemon and grapefruit trees. When Dawson-Cook saw her daughter’s speed and focus, she knew agriculture was an interest worth nurturing.

So Paige and her mother began delivering fruit from Hoppes’ garden, along with fruit recipes typed up by Paige, to school staffers on a weekly basis. Quickly, demand for their fruit deliveries expanded to a local church that provides food to elderly and hungry community members.

“Once the local fruit trees were exhausted, Dalton-Cook began reaching out to new groups that could donate surplus produce, including backyard vegetable gardeners, the Escondido zero-waste group More than Apples… and local commercial growers like Yasukochi Farms in Oceanside [California], which donates several crates of vegetables to the cause each week,” wrote Kragen.

In July 2020, Dalton-Cook filed documents to make Paige’s Pantry a registered nonprofit organization. The organization received nonprofit status in January 2021.

Nowadays, Paige’s Pantry provides produce to 30 families. They hope to serve 100 families by early 2022.

It works like this: Paige and her mother pick fruit and amass produce donations every Thursday. Friday mornings, four young adult volunteers with autism ages 17 to 24, come to the Dalton-Cook home to help compile delivery orders. Then, the mother and daughter make deliveries to subscribers who don’t have transportation. On Saturdays, subscribers who drive come to the Dalton-Cook house and pick up their bags of produce curbside.

“It’s so new and growing so fast, I am taking this one week at a time,” Dalton-Cook told Kragen. “Paige and I are learning each day,” she said. “It’s definitely a learning curve, but so is every start-up.” Dalton-Cook hopes that someday, the venture will become Paige’s “full-time career.”

Photo courtesy of Paige’s Pantry, www.paigespantry.org

(Graphic courtesy of the European Space Agency)

Once upon a time in the not so distant past, many professions were off limits to individuals with disabilities. While disabled individuals still face significant obstacles entering the job market, one profession that was previously a pipe dream for the disabled is now a possibility.

In March of this year, the European Space Agency announced its search for the first astronaut(s) with disabilities. ESA’s “Parastronaut Feasibility Project” seeks individuals “who are psychologically, cognitively, technically and professionally qualified to be an astronaut, but have a physical disability that would normally prevent them from being selected due to the requirements imposed by the use of current space hardware.”

According to ESA, the time for the project is now. The agency recognizes that “since the last selection of ESA Astronauts in 2008-09, the expectations of society towards diversity and inclusivity have changed.” ESA wants to be part of that change for several reasons:

1. ESA recognizes the value of inclusion. According to the ESA website: “Including people with special needs also means benefiting from their extraordinary experience, ability to adapt to difficult environments, and point of view.” ESA leadership also believes the organization has a responsibility to work toward providing an inclusive workplace and industry.
2. ESA has a desire to “lead by example.” The agency hopes that the project will encourage qualified disabled individuals to apply for other jobs at the agency and to consider careers in the space sector.
3. The agency stated that having disabled astronauts “could bring some new, astonishing results in the field of life sciences for the benefit of even more people back on Earth.”

To come up with conditions for the project, ESA consulted with the International Paralympics Committee. Based on the consultation as well as the agency’s own assessments, for now, ESA has limited applications to those with very specific disabilities — “people without a lower leg, those who have one leg shorter than the other and adults under 4¼ feet tall.”

Since the project was announced, ESA has fielded hundreds of applications from candidates in 22 countries throughout Europe. The deadline for applications for the project has been extended to June 18, 2021. ESA stresses that the project is still in the experimental stages, so the recruitment is not associated with a particular space mission or launch date.

In the United States, NASA has expressed support for the project. So far, however, the agency has not opened its own application process to those with disabilities. In a statement, NASA’s Kathryn Hambleton told WIRED magazine, “We at NASA are watching ESA’s para-astronaut selection process with great interest. NASA is not currently considering changing our selection criteria, however space is quickly becoming more accessible than ever before thanks to NASA’s dedication to commercial and international partnerships. We look forward to working with ESA, and all our partners’ new astronauts in the future.”

Though this is the first time a government agency has recruited disabled individuals for a potential space mission, it is not the first time a person with disabilities has attempted space travel. In 2007, the late cosmologist Stephen Hawking who had amyotrophic lateral sclerosis

(ALS), experienced approximately four minutes of weightlessness when he rode on the Zero Gravity Corporation’s modified Boeing 727 jet. It was the renowned scientist’s 65th birthday gift to himself.

(Photo Credit: Infinite Flow Dance Co.)

The world of professional dance is cutthroat to put it mildly. Just ask Marisa Hamamoto, a professional dancer who founded Infinite Flow, a dance company for individuals with and without disabilities in 2015. Hamamoto, who experienced a stroke that left her temporarily paralyzed from the neck down in 2006, established the company to challenge the status quo in the professional dance world and to create opportunities for disabled dancers. For her efforts, Hamamoto was named one of People Magazine’s Women Changing the World in 2021. Recently, she told People “We’re changing the narrative around disability and diversity. We’re using dance as a way to dismantle stereotypes.”

Hamamoto isn’t the only dancer who believes that the world of professional dance should be more inclusive. Today, dance companies that include dancers with disabilities exist all over the world. Below are examples of just some of the dance companies that employ disabled dancers. As more and more performance venues reopen post-COVID-19, consider catching one of these companies in action:

 

• Heidi Latsky Dance Company Based in New York City, Heidi Latsky is known as a “physically integrated” company because it integrates dancers with and without disabilities. Latsky is not disabled, but “in 2006, Latsky recognized a resonance between her own artistic process and core tenants of disability culture: prioritizing collaboration, centering radical bodies, exquisite asymmetries, moments of raw or uncomfortable beauty, and differences as sites of power,” according to her website. Her first foray into integrated dance came when “guided by influential disability activists such as Lawrence Carter-Long and Simi Linton, HLD premiered ‘GIMP,’ its confrontational first full-length inclusive work, in 2008, and toured it through 2012.”

• AXIS Dance in Oakland, California, is probably the most well-known integrated dance company. The award-winning company was founded in 1987 and has toured widely. In addition to its performances, AXIS also offers dance classes and outreach programs for dance students of all abilities. In an interview with the Harvard Gazette in 2020, artistic director Marc Brew, who uses a wheelchair, explained, “in the world of classical ballet, everyone’s striving for the so-called ‘perfect body’ and looking the same. What we rejoice in and are very proud of is that through difference, there is beauty and that’s what we bring, and how we collaborate together. We’re not trying to be the same.”

• Kinetic Light was founded by dancer, engineer and wheelchair user Laurel Lawson, lighting designer Michael Maag and dancer and wheelchair user Alice Shephard in 2016. Unlike many integrated companies, Kinetic Light describes itself as a “disability arts ensemble.” According to its website, the company is “led by a disabled artist; disabled artists create, design, and perform the work; our work speaks to and emerges from disability aesthetics and disability culture; and our work is connected to the rich traditions and exciting contemporary conversations of disabled artists in all artistic fields.”

• Urban Jazz Dance Company in the Bay Area of California includes both hearing and deaf dancers. It was founded by deaf dancer Antoine Hunter. According to an article in Artnews, Hunter “reminds us that American Sign Language (ASL) is a form of bodily expression. He experiences music as vibrations in his bones rather than sounds in his ears, which makes the translation of beats to movements natural.”

• Dancing Wheels Company & School, a physically integrated organization, was established in Cleveland, Ohio, in 1980. According to its mission statement, the company’s founder, Mary Verdi-Fletcher, was the first wheelchair dancer in America. The statement goes on to explain that “having been born with spina bifida, Mary wanted to open the doors of opportunity for people with disabilities who wanted to pursue their goals on an equal ground with their non-disabled peers. Mary always wanted to be a professional dancer, and was not going to let her disability stand in her way.”

• Anjali Dance Company trains dancers with learning disabilities to be professional dancers. Founded in the UK in 1995, the company added a youth company in 2006. The company’s website says that the organization is “committed to challenging preconceptions about who can dance and demonstrating new artistic possibilities by creating dance works of excellence performed by dancers with learning disabilities.” The company offers dance education and outreach programs that are taught by instructors with learning disabilities. “Through our innovative and pioneering work, we engage the professional dance community in a debate on fundamental issues about aesthetics, form, purpose and inclusion.”

Being a mom is arguably the hardest—and most rewarding—job in the world. For moms who are the primary caregiver for their disabled child or adult child, there’s no argument. It is the hardest job in the world and it is the most rewarding. For these moms, caregiving is their superpower!

This Mother’s Day, let’s celebrate the superhero moms by caring for her as much as she cares for her family. Here are 10 suggestions for making Mom’s Day a great one:

1. Tell her how much she means to you—out loud. Dads, siblings, friends or relatives can help verbal children practice a small speech or story or song that tells Mom how much she is loved. Non-verbal children can use their communicators to do the same.

2. Make her something. Handmade gifts are the best—even just a handprint on a piece of paper with a sweet sentiment will be treasured.

3. Give her time to do what she wants to do. Read a book, go for a walk by herself, get a manicure or take a nap. Time off for caregivers is essential to their well-being.

4. Make her a healthy meal. Moms tend to do all the cooking so here’s a chance to give back. Each family member can help to the best of their ability (adapted tools like our Pouring Cups can make meal prep accessible).

5. If the weather’s good, take Mom outside. Set up her favorite chair in the sun and entertain her with silly play, like bubbles or finger painting.

6. Hire an extra hand for the day to relieve Mom of some her caregiving responsibilities.

7. Make Mom laugh! Laughter is the best medicine, they say. Laughing releases endorphins, releases stress and decreases tension, according to the Mayo Clinic.

8. Remind Mom of her accomplishments. Make a list of life’s victories, big and small, that have happened over the past year.

9. Arrange for Mom to have a little vacation. Research respite care programs in your area or ask family members and friends to come in for a day or two so Mom can get away.

10. Give her the gift of relaxation—a massage, a subscription to a meditation app, a yoga class or spa day—whatever she likes to do to wind down.

And most of all, give Mom big hugs and kisses! Happy Mother’s Day!

On March 11, President Biden signed the long awaited American Rescue Plan, a $1.9 trillion COVID-19 relief package. The relief can’t come fast enough for people in the disabilities community who have suffered disproportionately to others during the pandemic.

Disabilities activists are looking to the bill for clues to how the new administration will respond to the needs of individuals with disabilities. Here are some of the ways in which the plan will benefit the disabilities community.

1. Stimulus checks
The package includes $1,400 stimulus checks to individuals earning up to $75,000 in adjusted gross income, heads of household with up to $112,500, and married couples who file jointly with up to $150,000. This is the third round of stimulus checks issued since the pandemic began. For the first time, however, adults with disabilities who live with their parents or guardians are eligible to receive their own payments. What’s more, the payments won’t impact their eligibility for benefits like Social Security, Medicaid, and Medicare.

2. Financial aid to schools
School closings during the pandemic have had detrimental effects on many students, but particularly for students with disabilities who had difficulties adapting to online learning. The American Rescue Plan provides more than $170 million in funding to safely open schools and keep them open for the duration of the pandemic. According to RespectAbility, the plan “specifically addresses the needs of students with disabilities throughout the K-12 education system. Out of the $2.5 billion dedicated to special education supports, $200 million are dedicated to meet the needs of preschoolers with disabilities and $250 million are designated to go to help infants and toddlers with disabilities.”

3. Unemployment Insurance extension
The pandemic has had a devastating effect on the worldwide economy and unemployment rates have soared during this time. Individuals with and without disabilities have suffered, but those with disabilities—who are already disproportionately excluded from the workforce—were hit hardest. “According to an analysis by the University of New Hampshire’s Institute on Disability (UNH-IOD), the labor force participation rate for working-age people with disabilities is currently only 33.4 percent,” reports RespectAbility. The plan assures an additional $300 in weekly unemployment benefits from the federal government through Labor Day—offering relief to the 18 million Americans who are still jobless.

4. Expanded tax credits for children and families         
The expansion of tax credits for children and families will help all parents and children in the United States including families of children with disabilities. The rescue plan provides for families to receive $3,000 per child this year for kids aged 6-17, and to $3,600 for kids under 6. Paying for services, devices and healthcare for children with disabilities is expensive. These tax credits will truly make a difference to families across the country.

5. More subsidies for health insurance
Subsidies for individuals and families who get their health insurance through the Affordable Care Act will make healthcare more affordable. Though this increase will benefit all ACA users, individuals with disabilities tend to have higher than average health care costs. Increased subsidies will naturally make life easier for them.

6. Increased funding for food insecurity
According to the Center on Budget and Policy Priorities, 20% of people with disabilities rely on the Supplemental Nutrition Assistance Program (SNAP). The rescue plan’s increased funding for SNAP and other food and nutrition programs will decrease food insecurity for many Americans with disabilities.

7. Home and community-based services
The package includes $350 billion that states and localities can use to fund services such as “home care and personal assistance, home accessibility modifications, and help for people transitioning out of nursing homes, group homes, and other more supervisory facilities into more independent homes and communities,” writes Forbes contributor Andrew Pulrang. The first two COVID-19 relief bills did not provide funds for these purposes.

In recent times, police officers have been under fire for their behavior toward individuals with autism and other developmental disabilities.

For instance, back in September of 2020 13-year-old Linden Cameron was experiencing a mental health crisis when he was tragically shot and seriously injured by officers called to the scene to help Linden’s mother, Golda Barton, transport him to the hospital for treatment. This occurred despite the fact that Barton told police that her son has autism and was unarmed.

“There are times when the police are in dangerous situations and use of measured force may be warranted,” said Christopher Banks, President and CEO of Autism Society of America. “But an unarmed, 13-year-old boy in distress does not seem to be a life-threatening situation for police officers.”

Sadly, Linden’s disastrous interaction with police is nothing unusual. According to the Autism Society of America, “Approximately 1 in 5 young adults with autism spectrum disorder (ASD) will interact with a police officer before the age of 21. Individuals with disabilities, including those with autism, are five times more likely to be incarcerated than people without disabilities. Additionally, police interactions lead to more injuries and fatalities within this vulnerable population, largely due to lack of training and the improper use of excessive force.”

But some police forces are taking steps to change the status quo. The Katy Police Department in Katy, Texas, is trying to be part of the solution. Earlier this month, the force initiated “Project Guardian,” a new program that aims to improve interactions between people with autism and police.

According to Claire Goodman, a reporter for the Houston Chronicle, “Project Guardian is a voluntary program whereby families or caregivers of individuals with autism can register with the police department to inform the department of the individual’s special needs.”

The six officers who are part of the Project Guardian team have all received training in the characteristics and needs of people with autism. They are led by officers Mark Garsee and Christopher Koenig, the father of a daughter with autism. Koenig told the Chronicle that “each autistic person has their own needs or triggers, so it’s really important our officers be prepared for that.”

Families in Katy with members with autism are provided with stickers of puzzle pieces— a symbol typically associated with autism — that they’re asked to put on their front windows. If an officer is called to the home and sees the sticker, he or she is alerted to the fact that a person with autism lives there and may require special consideration and sensitivity.

The police department has also purchased a vehicle with the puzzle piece logo to be used by the Project Guardian team. The vehicle alerts members of the community that the officers in the car are trained to work with individuals with autism.

As Katy Police Chief Noe Diaz told the Chronicle, “This is just an incredibly important program, and we’re so excited that it’s off the ground. We really think it has the potential to do a lot of great things.”

After President Biden’s inauguration, social media was abuzz about Vice President Kamala Harris’s step-daughter Ella Emhoff’s fashion ensemble. Turns out, Ella is a design student at New York City’s Parsons School of Design at the New School, where Assistant Professor Grace Jun teaches. Jun is also chief executive of the nonprofit Open Style Lab, an incubator for accessible clothing design.

Established at MIT in 2014, OSL “is dedicated to creating functional, wearable solutions for people of all abilities without compromising style.” The organization is made up of designers, occupational therapists and engineers who work in consultation with disabled individuals “to conceive and build accessible wearables that address the needs of and with people with disabilities.”

Among OSL’s most important offerings is the accessible design course it provides through its collaboration with Parsons School of Design. OSL Academy provides classes and experiential learning opportunities that teach students about disability, accessibility, adaptive fashion and universal design.

Students at OSL, “create wearable solutions that encompass style and functionality for the inclusion of people with disabilities (injury, aging included).” According to OSL’s website, past projects have included:

• • A voice-amplifying wearable necklace created with a person with multiple sclerosis
  • A rain jacket that fits into a backpack adapted for an electric wheelchair
  • A wool coat that was custom shaped for posture with a person with cerebral palsy
  • An inflatable vest for seated comfort for a person with a curved spine due to bone cancer
  • Leggings for the seated body that has easy access to a catheter.

While some of OSL’s content is available only for matriculating students, other content such as OSL’s co-authored book “Universal Materiality: Wearable Interaction Design and Computer Aided Process for Accessible Wearable Solutions” is available to the public on the OSL website. Some of OSL’s DIY fashion hacks such as this one about creating pockets, can be seen on here on YouTube. A DIY accessible mask pattern created by Jun, is also available on the website. As Jun told the Washington Post, “Accessible design is better design.”

In addition to OSL’s partnership for undergraduate and graduate students at Parsons, the nonprofit has offered an award-winning summer program for teen girls with disabilities since 2019.  The program’s inaugural season was co-sponsored with NYU Langone Medical Center’s Initiative for Women with Disabilities. Working with designers, OTs and engineers, the girls in the program, created the “Hack-Ability Kit, a DIY bundle that “includes a range of items that the disabled can use to modify their apparel, and focuses on two basic elements: pockets and loops,” according to Anna Zappia and Ben Spier of Metropolis magazine. At the same time, creating the Hack-Ability Kit helped participants improve their STEAM (science, technology, engineering, the arts and mathematics) skills.

The successful OSL summer program was offered again in 2020 when it was presented through  a partnership with the Muscular Dystrophy Association. Due to COVID-19, last summer’s program took place via zoom.

Mentorship opportunities are also available through OSL. Mentors — individuals who have disabilities that make dressing a challenge — work with students to help them understand their unique clothing needs. Through their interactions with mentors, students learn to design clothes that will make life easier (and more stylish) for their mentors and people with similar challenges.

OSL also works with corporations and design professionals interested in making their collections more accessible. They offer corporate training workshops; panel discussions and public programs; and conduct research about a range of topics pertaining to accessible design.

Since its inception, OSL has worked with corporations such as IKEA, Macy’s, Cooper Hewitt and Microsoft.

OSL welcomes people with ideas and questions, in addition to those seeking internships and mentoring opportunities, to visit their website at https://www.openstylelab.org/incubator/parsons-x-osl

If your child suffers from a sleep disorder, he or she is not alone. According to the American Academy of Pediatrics “sleep problems have a high prevalence throughout childhood and adolescence, with 25% to 50% of preschoolers and up to 40% of adolescents experiencing sleep-related problems.”

Sleep problems including insomnia, sleep apnea, night terrors, bedwetting and sleepwalking are even more prevalent among children and teens with disabilities. One study found that “49 to 89 percent of children on the autism spectrum had trouble sleeping,” says the Therapy & Wellness Connection. “Same goes for 25 to 50 percent of children with attention deficit hyperactivity disorder and 34 to 86 percent of children with intellectual disabilities.”

Sleep deprivation is problematic for all youngsters, but particularly for those with special needs. For instance, “there is mounting evidence that too little sleep can exacerbate autism features, such as poor social skills,” says Spectrum News. “Children who do not get enough sleep often have more severe repetitive behaviors and a tougher time making friends than other people on the spectrum. They also tend to score lower on tests of intelligence.”

Fortunately, there are steps you can take to improve your child’s sleep hygiene. Here are some tips:

1. Determine what’s causing the sleep difficulties
Sleep disorders can be caused by physical or psychological problems. For example, children with Down syndrome are prone to sleep apnea due to anatomical differences. In children with autism, sleep disorders may be caused by anxiety. Consult with your pediatrician or a sleep specialist and talk with your child to learn more about what may be causing the disturbance.

2. Stick to a schedule
It’s not always easy, but experts agree that the more you’re able to maintain a routine — dinner-time, tooth-brushing, bath-time, story-time, massage — the easier it will be to get your child to sleep. Children should also have a regular wake-up time. Try creating a chart with visual cues that concretize the bedtime routine. There are many printable charts available online. Here’s one example.

3. Create a sleep-friendly environment
Keep the room temperature cool and dark, play soothing music or use a rain or ocean-sound app to help children relax. “With calming music and a guiding voice, apps help kids relax, from a ‘body scan,’ during which you relax your body starting with your toes, to breathing and visualization,” says Beth Arky of the Child Mind Institute. Weighted blankets, such as this one sold by Enabling Devices, can also help to decrease sleep anxiety and increase relaxation.

4. Stop food and drinks a few hours before bedtime
“Children with special needs tend to have more sensitive digestive systems,” says Melissa Doman of Melissa Doman Sleep Consulting. “If your stomach is still full when laying horizontal to sleep, acids from the stomach will leak into the esophagus, creating that sensation of reflux.” Additionally, avoid caffeine and sugar which are stimulants and may keep your child from falling and/or staying asleep.

5. Cut off screen-time at least one hour before bedtime.
“The blue light emitted from the TV, computer, tablet and smartphone is detrimental to sleep,” says Doman. “Too much stops natural melatonin production in the brain, making it harder to fall asleep and stay asleep.”

6. Provide mental and physical stimulation during the day
Make sure your child has opportunities to exercise her brain and her body during the day. That will tire her out so she can fall asleep when bedtime rolls around.

7. Install a monitor
If you have concerns about your child’s physical well-being overnight, install a monitor in the child’s room that will alert you should a serious problem arise.

8. Make sleep medications a last resort
Give behavioral techniques a serious try before considering pharmaceutical sleep aids. If after trying the techniques listed here, you’re convinced that only medication will do the trick, consult with your pediatrician. Your doctor may suggest starting with herbal treatments such as melatonin or valerian root, which have been shown to be safe and effective.

Ableism — Merriam-Webster’s Unabridged Dictionary defines the term as “discrimination or prejudice against individuals with disabilities.” Stop Ableism.org provides a more detailed definition: “The practices and dominant attitudes in society that devalue and limit the potential of persons with disabilities. A set of practices and beliefs that assign inferior value (worth) to people who have developmental, emotional, physical or psychiatric disabilities.”

As we begin a new year, Enabling Devices provides some suggestions on how to fight ableism.

1. Learn about Ableism

“Oftentimes people are ableist without realizing it,” says disabilities activist Kristen Parisi. “When you tell a disabled person you’re ‘praying for them,’ that implies that there’s something wrong with their disability. Learning about what ableism is will help you change your own behavior.” To get started, Parisi recommends reading disabled activist, media maker, and consultant Alice Wong’s new book, “Disability Visability.” Other good reads about ableism include: “Nothing About Us Without Us: Disability Oppression and Empowerment,” by James I. Charleton; and “No Pity: People with Disabilities Forging a New Civil Rights Movement,” by Joseph P. Shapiro.

2. Hire people with disabilities

In recent years, business owners have begun to recognize the value that people with disabilities bring to their businesses. According to Business.com, hiring people with disabilities can “increase your profit margin,” “diversify your company culture,” “increase company diversity,” and “decrease turnover.” At a time when American businesses are struggling to find qualified candidates, hiring individuals with disabilities would provide “access to a talent pool of more than 10.7 million people with diverse strengths, leadership styles and ways of thinking.” Finally, hiring people with disabilities gives employers federal and state tax incentives.

3. Follow disabilities activists on social media

Whatever you feel about social media, it has given many disabilities advocates a platform where they can express their views about disability rights, as well as everything else. Here are just a few social media influencers you may want to follow:

• • • Tiffany Yu (@imtiffanyyu) founder of Diversability, “an award-winning social enterprise to rebrand disability through the power of community.”
    • Judy Heumann (@judithheumann) is a Senior Fellow at the Ford Foundation, a disability rights advocate, and a former diplomat.
    • Andrea Dalzell, BSN, RN is the first nurse in New York State to use a wheelchair. She shares her wisdom on Instagram @TheSeatedNurse
      Facebook @AndreaDalzell and @MsWheelchairNY2015
    • Antwan Tolliver, a fashion designer and gunshot victim paralyzed from the waist down. @freedomisfly
    • Richard Corby, creator of the Wheels2Walking YouTube channel which features educational and entertaining videos for wheelchair users.

4. Push for greater accessibility

Advocate for those with disabilities by being aware of your surroundings and noticing whether they accommodate people with disabilities. As Noah Rue writes for Rolling Without Limits.com, “ask questions, such as: “How can someone without full mobility struggle with bus stops? Construction zones? Schools? Restaurants? …What can be done to alleviate those difficulties?”

5. Don’t use ableist labels and expressions

Words matter! It should go without saying that the “R-word” is unacceptable. But other phrases such as “confined to a wheelchair,” or “that’s lame,” “the blind leading the blind,” etc. can be offensive to people with disabilities.

6. Don’t assume that individuals with disabilities must be chronically depressed

“Just because someone has a disability doesn’t mean he or she is living a life that’s any less than an able-bodied person’s,” writes Katie Dupree for Mashable. “Like any able-bodied person, people with disabilities adapt to accommodate their own experiences. But that’s not something that makes a person living with disabilities less fortunate or clearly miserable.”

In March 2017, to celebrate Cerebral Palsy Awareness Month, Enabling Devices paid tribute to Karen Killilea and her mother Marie Killilea in a blogpost about Marie’s New York Times best-selling books, “Karen,” and “With Love from Karen.” The books, written in 1952 and 1963 respectively, tell the true story of Karen, a girl with cerebral palsy and her trials, tribulations and triumphs in an era when little was known about the condition and many in the medical field believed children like Karen should be institutionalized and kept apart from their families.

On December 18, 2020, the New York Times published Karen Killilea’s obituary. She died Oct. 30, 2020, in Port Chester, New York, at the age of 80. As Karen’s sister Kristin Viltz told the New York Times, the cause of her death was “a respiratory condition that led to heart failure.”

Karen was born in 1940 to Marie, a homemaker and James, a telephone company executive who lived in Rye, New York. At the time of her birth, Karen was three months premature and weighed less than two pounds. As she failed to reach developmental milestones, Karen’s parents consulted with doctors who were overwhelmingly pessimistic about the baby girl’s prognosis. According to Marie Killilea’s 1991 obituary, doctors told her and her husband James that their daughter’s ‘case was hopeless.’ They said that ‘Karen had no intellect, could never learn to walk or communicate with others.’ But Marie knew they were wrong.”

Indeed, Karen, who was finally diagnosed with CP at the age of 3, went on to achieve a great many things. Through a rigorous training regimen conducted by her mother, Karen learned to walk with crutches (though she eventually switched to using a wheelchair), swim, and attended a local Catholic school. She worked for many years as a receptionist at a Catholic retreat center, was a dog obedience trainer and lived independently throughout her adult life. Her mother’s books and Karen’s accomplishments brought hope to millions of families with disabled children.

In addition to her best-selling books, Marie was a tireless advocate for people with cerebral palsy. She founded the Cerebral Palsy Association of Westchester County as well as a national CP organization that later became United Cerebral Palsy.

These organizations have a special connection to Enabling Devices. It was during a consulting position with UCP in Nassau County, Long Island, in 1974, that our founder Steven Kanor first became aware of the need for adaptive toys. As Steve’s 2015 obituary reads: “Upon arriving at UCP, he was amazed to find that the children had some basic biofeedback equipment, but no toys. “Toys,” he said, “are children’s tools. Without them they cannot grow and develop. Play is the job of childhood.”

Four years later, Steve founded Toys for Special Children (now Enabling Devices), “a business devoted to providing children with disabilities ‘maximum delight’ while at the same time helping to develop cognitive and mobility skills.”

To this day, Enabling Devices enjoys a special relationship with Cerebral Palsy of Westchester (CPW). Therapists at CPW routinely share their expertise and test our toys with their students. In fact, occupational therapist Tina Weisman, a longtime CPW employee, private practitioner and doctoral candidate recently joined Enabling Devices as a consultant for new product design, telehealth and online learning.

Looking for a great read during the cold weather months? Pick up one of Marie’s books. She also wrote “Wren” an abridged version of Karen’s story for children in 1981.  “Karen” and “With Love from Karen,” are available on eBook and used print copies may be found on eBay and elsewhere online.

When Marc Stecker received a diagnosis of primary progressive multiple sclerosis in 2003, he “dove head first into MS research.” But he didn’t stop there. Stecker, a New York City resident, created an award-winning blog to share his findings with other MS patients as well as MS researchers and clinicians. Now, the 57-year-old former punk rock ‘n roller and director of DVD production for a renowned international music company, is being honored for his leadership efforts with an award that’s named for him.

The Marc Stecker Award was conceived by the Buffalo Neuroimaging Analysis Center (BNAC) at SUNY Buffalo, “to foster innovative and patient-centric research by BNAC researchers seeking a cure for multiple sclerosis.”

Stecker was a 39–year-old newlywed when he first noticed he was limping. “Looking back, there were symptoms before that, but it was the limp that sent me to the doctor,” Stecker recalled. “I received my official diagnosis a year later and I stopped working less than four years after that.”

Stecker became active on MS forums on the Internet, where he started posting about what he was learning about the disease. “I found that I had a facility with translating medical speak into English,” said Stecker. “I was posting a lot because there was so much research. I almost considered it a job. People on the forum started saying, ‘You should really start a blog. This is useful information.’”

By the summer of 2008, Stecker needed a wheelchair to get around. He started his blog — Wheelchair Kamikaze — in early 2009. “The blog started as a repository for my pictures and videos. I mounted a camera to my wheelchair and rode around Manhattan taking photos and videos. Later, I started writing about life with MS and medical research. I never realized anyone other than friends and family would see it,” Stecker said.

But he was wrong. Stecker’s blog has won various rewards and has garnered recognition from the online MS community and beyond. “It is read by patients and neurologists,” he says. To date, WheelchairKamikaze.com has received almost 4 million page views. Due to worsening MS symptoms, Stecker said he rarely posts on the blog these days. Yet blog visitors can still find fascinating information; scenic and hilariously narrated videos of Stecker’s travels around the Big Apple; and honest, hard-hitting commentary about America’s healthcare system, and the brutal realities of living with a chronic, debilitating illness.

Stecker’s blog and MS advocacy has connected him to patients, doctors and researchers from all over the world and he has made countless friends in the MS community.

Stecker’s notoriety has earned him interviews with CNN commentator and neurosurgeon Dr. Sanjay Gupta, NPR, and Multiple Sclerosis Discovery: the Podcast of the MS Discovery Forum.

“Having MS and starting the blog, woke up my inner science nerd. I went to a science high school and I was a geeky science person but I never pursued it before,” Stecker noted.

Due to his leadership in the MS community, Stecker became a founding member of BNAC’s Advisory Council in 2010. “It’s me and about a dozen other patients. We have quarterly meetings by Zoom and the researchers fill us in on the latest projects and we give input on what directions research should take. It’s a synergistic relationship,” said Stecker.

“Through the years, I’ve given a lot of input. I pushed them to study the relationship between Epstein Barr virus and MS. I really stressed that one of the keys to finding a cure or a treatment for MS is finding out the role Epstein Barr plays in genetics and autoimmunity. So, they started studies on ways to image [neurological] inflammation associated with Epstein Barr and MS.”

About a year ago, Stecker received a phone call from someone at BNAC. “The person said they would be starting an award named for me that would be going to the most promising graduate student, research associate, etcetera. I was very proud and flabbergasted.”

The first Marc Stecker award was given out in early December 2020 at BNAC’s online holiday party. The award — which includes a $1,000 cash grant and a framed photo taken by Stecker during one of his wheelchair rides around Manhattan — went to a “brilliant Ph.D. candidate from Macedonia,” said Stecker. Additionally, the winner received a letter from Stecker.

“The letter says that the primary objective of the winner should be to put themselves and every other MS researcher and clinician out of a job by eradicating MS. When researching any disease, it’s easy to get caught up in the intellectual and academic puzzles. But remember there are people involved who are suffering miserably. At the heart of every great researcher is a humanitarian. Don’t separate the research from the people.”

After a three-year courtship and a successful YouTube venture, Cole Sydnor, 25, and Charisma Jamison, 26, the stars of the YouTube Channel, “Roll with Cole and Charisma,” recently tied the knot during a small outdoor wedding in Richmond, Virginia. Due to COVID-19, health and safety precautions were taken at the event and most of the wedding guests watched the ceremony offsite on a livestream.

An interabled (he has a physical disability and she does not) and interracial couple, the two met when he was a patient at Sheltering Arms Physical Rehabilitation Centers in Richmond, and she was a rehab technician there.

Sydnor became a C5/C6 quadriplegic after a diving accident in 2011. The accident caused him to lose the use of his hands, torso and legs, with only some degree of function in his arms, shoulders and wrists. Though Jamison and Sydnor realized they would face challenges, which did not stop them from falling in love.

As Jamison told the New York Times Vows columnist Robbie Spencer, “It was very easy to look past physical limitations being in my career. And the fact that Cole was super attractive didn’t hurt.” Said Sydnor to The Times: “As an interabled and interracial couple, we’re proof that love can be found anywhere.”

When the couple began dating, they were confronted with many questions about what it was like to be in an interabled relationship. That is how “Roll with Cole and Charisma” got started. Instead of being annoyed by the curiosity of others, the couple began posting videos answering their questions and addressing the issues they face, from physical intimacy to how they manage transitions from the wheelchair to the car, to welcoming a new service dog, to making their home accessible, to being in an interracial relationship. Sydnor’s positive attitude and great sense of humor and Jamison’s vivacious, warm personality have made their channel an Internet sensation. Currently their channel has more than 200 episodes and 531,000 followers— enough to become YouTube partners who are able to earn income from advertising on the channel. In addition to running their channel, the couple also has a freelance production enterprise.

According to the Times article, Jamison and Sydnor have also become disability advocates. Together they have presented a Ted Talk about their experiences, and Sydnor addressed an audience at Google headquarters about the need for universal design on behalf of the Christopher & Dana Reeve Foundation.”

While individuals with disabilities still face stigma when it comes to dating and marriage, slowly, the landscape is changing. According to WAGS of SCI (Wives and Girlfriends of Spinal Cord Injury) cofounder Brooke Page, “In today’s day and age, social commentary surrounding disability is beginning to slowly change for the better. No longer is our community shunned or excluded as frequently, and inclusion is becoming a top priority worldwide. Acceptance is booming; minds are changing; new attitudes are running the show. Now is the perfect time for the backward thinking (that still does exist, unfortunately) to be left in the dust, and for people to see others for who they are, not for what they may seem to be by their appearance. It’s time for a change to be made — permanently.”