Category: Living with Disability

A new scholarship and mentoring program is enabling more students with disabilities to pursue college degrees in fashion and careers in the fashion industry.

The Parsons Disabled Fashion Student Program, a collaboration between New York City’s Parsons School of Design and Tilting the Lens—a consultancy that helps clients create accessible solutions—a provides students with tuition, living expenses, mentoring from fashion industry insiders, and other types of assistance. The program’s aim is to make the prestigious design school and the fashion industry itself, more inclusive and equitable.

Until recently, the fashion industry was notorious for excluding or ignoring the disabled community. And while inclusive and adaptive clothing has become increasingly available, the industry was still mostly closed to disabled fashion creatives. According to its website, Parsons, which is affiliated with Greenwich Village’s The New School, is “committed to breaking down these barriers to provide access to fashion education and careers and, by doing so, helping the industry reach its full creative potential.”

Ben Barry, Dean of Parsons School of Design, spent three years working to get the program off the ground. Since being appointed dean in 2020, Barry, who identifies as disabled, has made a commitment to social justice in fashion.

Parsons’ program of study reflects that commitment. For example, the school offers courses such as “Indigenous Fashion; Fat Fashion: Design for Large Bodies; Blackness and Fashion; Fashion and Disability Justice; Latin American Fashion; Sensory Design; and Fashion and the Land.”

Students in the program can expect to be mentored by disabled fashion designers such as Sky Cubacub, who has an invisible disability, and Sugandha Gupta, who has Albinism. High fashion model Aaron Rose Philip who has cerebral palsy and has worked with designers such as Versace and Moschino, also serves as a mentor.

Scholarship money for the new program will be provided by retail giant H&M, and the Ford Foundation, a leading voice in disability philanthropy, will conduct research on disabled students’ fashion school experiences. Parsons says that the program is open to any disabled student “with a passion to design fashion to bring their fresh and diverse perspective.”

The Parsons Disabled Students Program isn’t the college’s first foray into disability justice. Several years ago, Parsons partnered with Open Style Lab, a nonprofit “dedicated to creating functional, wearable solutions for people of all abilities without compromising style.”

As this blog reported in 2021, “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.”

Parsons has also partnered with the Special Olympics to create inclusive apparel for athletes. Regarding the partnership, Brendan McCarthy, Systems and Materiality BFA Program Director at Parsons, told Mission magazine, “it can be used as a model for fashion and athletic/performance design houses, businesses more broadly and educational institutions to re-think how they approach critical issues around equity, inclusion [and]social justice…”

We all know the saying, “Parenting doesn’t come with a handbook.” That couldn’t be more true when you’re raising a child with disabilities. While parenting any child is a journey into the unknown, parenting a special needs child can be especially bewildering.

When challenges inevitably arise, it’s wise to consult with professionals and to seek support from friends and family. But there are also a great many books that provide advice and helpful hints for parents of children with special needs.

Here are some recommendations of new books that may offer valuable guidance for your parenting journey.

1. “Everything No One Tells You About Parenting a Disabled Child: Your Guide to Essential Systems, Services and Supports” (Hatchett Go, March 2024)
By Kelley Coleman
Written by a parent with 10 years of experience caring for a child with multiple disabilities, “Everything No One Tells You…” provides critical information in a style that’s accessible, humorous and warm. Perhaps that’s why it has a five-star rating on Amazon!

2. “Normal Schmormal: My Occasionally Helpful Guide to Parenting Kids with Special Needs (HarperCollins, July 2023)
By Ashley Blaker
How can you go wrong with a title like this? Part memoir, part self-help book, “Normal Schmormal” offers an honest view of what it’s like to parent kids with special education needs. Blaker should know. He’s the father of six kids, three of whom have SENs.

3. “Becoming Brave Together: Heroic, Extraordinary Caregiving Stories from Mothers Hidden in Plain Sight” (The Unknown Authors Club, May 2024)
By Jessica Patay and 10 contributing authors
This hot-of-the-press anthology includes essays by mothers who are deep in the trenches of raising children with a variety of disabilities. As author and reviewer Jennifer Pastiloff writes “Becoming Brave… is a gorgeous compilation of what it means to be human; how much we need one another, and a testament to the tenacity of not just the human spirit, but of love itself.

4. “Parenting at the Intersections: Raising Neurodivergent Children of Color” (Chicago Review Press, Jan. 2024)
By Jaya Ramesh and Priya Saaral
Parents raising neurodiverse children of color face unique challenges. This informative and important reference offers hope for parents with children who face discrimination on dual fronts.

5. “How to Build a Thriving Marriage as You Care for Children with Disabilities” (May 2024)
By Kristin Faith Evans and Todd Evans Ph.D.
Parenting children with special needs places a great deal of stress on a marriage. This book provides practical evidence-based ways to protect and strengthen your marital relationship.

6. “Parenting Autistic Children: Navigating the Spectrum (Independently Published, April 2024)
By Michael Stevens
In this new guide, Stevens offers practical and effective tools for all aspects of parenting a child on the autism spectrum including “managing melt-downs, navigating the healthcare and education systems, and creating a sensory haven.”

7. “Learning the Language of Autism: An A to Z Guide for Parents and Teachers” (Amazingly Uplifted, July 2024)
By Veronica Crafton
This important new reference illuminates concepts, jargon and definitions about autism, making it easier for parents and teachers to collaborate on the educational needs of their children and students.

If you’re under the widespread misconception that living with a disability means living without romance, Katie Mettner’s novels will surely change your mind.

After she became disabled by a ski accident that eventually led to the loss of her lower leg, Katie Mettner, a voracious reader from Rice Lake, Wisconsin, was frustrated that she couldn’t find novels featuring characters with disabilities. So, she decided to write one herself.

“I was like, okay we got to do something about this,” Mettner told CBS-News Minnesota reporter Susan-Elizabeth Littlefield during a recent interview.

“We have to write a story that actually talks about what it’s like to have a disability and that you are just a normal person. And you can fall in love, and you can have an epic love story because in the end all we want is a love story.”

Mettner’s first romance/mystery novel, “Sugar’s Dance” was published on Amazon in 2011. Like Mettner, the book’s main character “Sugar” is an amputee. And you’d better believe her disability doesn’t keep her from finding true love. Though Mettner never planned to write more than one novel, readers’ reactions to the book propelled her to keep writing.

“They wanted to tell me their stories, but they also wanted me to tell their stories,” she explained in a video interview. So, Mettner kept writing.

“Sugar’s Dance” turned out to be the first in a series of five books. To date, Mettner has published 61 novels and has 10 additional books awaiting publication.

“I write [my books] so that people with disabilities can feel represented and also so people without disabilities can read them and learn about people-first language, different disabilities and how they can approach people in their community,” Mettner said on CBS. In fact, Mettner’s website, katiemettner.com, includes a guide to people-first language as well as information about disability resources.

In 2023, Mettner caught the attention of an editor from world-renown romance publisher Harlequin, during the company’s “Romance Includes You” pitch event. The event was part of Harlequin’s efforts to increase diversity and representation in the romance genre. Now, Mettner has a contract with Harlequin Intrigue, a Harlequin imprint that focuses on crime and justice stories. Her new book, “Going Rogue in Red Rye County,” is currently being featured for Disability Pride Month 2024. The novel tells the story of undercover agent Mina August, who uses a leg brace, and must work with her ex-partner to solve a dangerous mystery.

Other featured novels on Harlequin’s list include the following picks:

• “Reunited with Her Off-Limits Surgeon” by Amy Ruttan
• “Caring for Her Amish Neighbor” by Jo Ann Brown
• “Agent under Siege” by Lena Diaz
• “Connection Error” by Annabeth Albert
• “Brought Together By a Pup” by Sue MacKay

For more information on these books, visit Harlequin.

For more information on Katie Mettner, visit katiemettner.com.

Summer arrives this week and many parents are scrambling to come up with ideas for keeping their kids busy. It can be especially challenging to find activities for children with disabilities since far too many places are inaccessible. If you live near an accessible or inclusive playground, you’re way ahead of the game.

Though playgrounds that accommodate children with disabilities don’t exist in all areas of the country, they are becoming more common. Some parents and organizations fundraise so that they can build them in their communities.

Have questions? Here are some facts about accessible and inclusive playgrounds including information about where they can be found across the United States.

1. Why are playgrounds so important?
Playgrounds offer critical opportunities for physical, social and intellectual development. Playground activities help children to develop physical strength, balance and motor coordination and provide sensory stimulation. They also give children countless opportunities for social interactions that teach empathy, sharing, turn-taking, cooperation and other social skills. Playgrounds are a place where children can practice intellectual skills such as language, problem solving, spatial relations, memory, attention, and critical thinking.

2. What is an accessible playground?
According to the National Center on Health, Physical Activity and Disability (NCHPAD) “an accessible playground ensures that all areas and equipment can be accessed or reached by children or adults with physical disability who use wheelchairs or other types of mobility devices… Accessibility should be taken into account in relation to the design and construction of the playground structure.”

3. What is an inclusive playground?
“An inclusive playground considers not just physical access, but also emotional, social, and psychological benefits of play,” says NCHPAD. “It encompasses the philosophy that children and adults of all abilities benefit immensely from being able to play and interact together. In addition to ramps, accessible swings, and play panels, an inclusive playground may also feature sensory walls, quiet sensory gardens, water play or splash pads, and more.

4. Where can I find an inclusive or accessible playground in my area?
New accessible and inclusive playgrounds are being built all the time so it’s difficult to find an up-to-date list of all of them. However, we did come across a  list of the 10 U.S. cities with the most inclusive playgrounds per 10,000 people. Pittsburgh, PA tops the list with 3.28 per 10,000. Other cities on the list include Albuquerque, NM; Arlington, VA; Lincoln, NE; Irving, TX; Baton Rouge, LA; St. Paul, MN; Atlanta, GA; Irvine, CA; Plano, TX. If your city isn’t on the list, some exploring on the internet should help you find the nearest inclusive playground to your home or vacation spot.

5. How can I bring an inclusive playground to my community?
Some communities initiate fundraising campaigns to build inclusive playgrounds and many are successful. Campaigns include a variety of fundraising strategies including crowdsourcing; special events; individual donors; corporate donors; and grants. To learn more, visit playworld.com.

Thirty-four years after the passage of the Americans With Disabilities Act, full access to public transportation remains a major obstacle for many disabled individuals. The situation in New York City is especially dire.

According to The New York Times, “New York has lagged far behind other major American cities in building access points for people with disabilities.”

Case in point: One in 15 New York City residents has difficulty walking, yet only 31% of New York City’s subway stations have elevators or ramps. In a city where the subway is the most practical and inexpensive way to get around, this status quo leaves hundreds of thousands of people with disabilities with no viable means of transportation. Making matters worse is the fact that the Metropolitan Transportation Authority (MTA) does little to maintain the elevators it does have. A 2024 assessment by The Rudin Center for Transportation at New York University found that existing elevators break down “approximately 25 times a day, with a 4-hour median repair time.”

As if that wasn’t bad enough, many stations have gaps between trains and platforms that are too wide for wheelchair users to safely get on or off trains. The gaps also endanger riders with visual impairment.

According to Gothamist, “the push to make the subway system more accessible began in earnest in the 1980s, when Eastern Paralyzed Veterans Association (now known as United Spinal Association) sued the MTA to force a $150 million modernization program for about 50 stations to include more access for riders with disabilities.”

Eventually, that lawsuit resulted in the installation of elevators in 10 subway stations.

Since then, the MTA has been sued by disabled riders and disability rights groups on numerous occasions. For decades, the transportation authority has chosen to pay legal fees and cash settlements instead of doing the work necessary to make subways accessible.

But MTA policy may finally be changing.

After settling two lawsuits in 2022, the MTA has pledged to add elevators and ramps to 95% of the city’s 472 stations by 2055. In June 2022, The New York Times explained that the settlement called for the transportation authority to “make an additional 81 subway and Staten Island Railway stations accessible by 2025… another 85 stations accessible by 2035, 90 more by 2045 and then 90 more by 2055.” Funding for the projects will come from the MTA’s capital budget.

As Sasha Blair-Goldensohn, a wheelchair user and disability advocate told AmericanCityandCounty.com: “This settlement builds on decades of work by countless disability rights advocates, activists and allies, like the Rise and Resist Elevator Action Group, telling everyone at court hearings and MTA board meetings the simple truth: ‘Elevators Are For Everyone.’ With this settlement, future New Yorkers and visitors—disabled and non-disabled alike—will ride one subway system together.”

A new exhibition at the San Francisco Museum of Modern Art (SFMOA) showcases the work of developmentally disabled artists from the Creative Growth studio in Oakland, California.

On view through Oct. 6, 2024, “Creative Growth: The House That Art Built” celebrates the 50^th anniversary of the studio — the first visual arts organization in the United States to support the work of artists with developmental disabilities.

The exhibition encompasses work created between 1981 and 2021, including acrylic paintings, pastel drawing, ceramics sculpture and film by artists Joseph Alef, Camille Holvoet, Susan Janow, Dwight Mackintosh, John Martin, Dan Miller, Donald Mitchell, Judith Scott, William Scott, Ron Veasey, and Alice Wong. Also on display are materials that document the history of Creative Growth and the organization’s influence on the disability, arts, and disability arts movements. In addition, SFMOMA commissioned a new piece by William Scott that’s installed at the entry to the museum’s second floor galleries.

Creative Growth was founded by artist Florence Ludin-Katz and her husband Elias Katz, a psychologist, in 1974 after the deinstitutionalization movement left many people with developmental disabilities without the support they needed to thrive in their communities. The Katzes believed that making art helped people with developmental disabilities find inner peace as well as outward acceptance by others who could appreciate their work.

“…Each person has the right to the richest and fullest development of which he is capable,” said the Katzes on SFMOMA’s website. “Only then can society reach its fullest potential … Creativity is a vital living force within each individual.”

According to The New York Times, “Creative Growth: The House That Art Built,” includes approximately 80 works by 23 artists associated with Creative Growth, and affiliated Bay Area organizations Creativity Explored and NIAD (Nurturing Independence Through Artistic Development). Both affiliated organizations were also founded by the Katzes.  “The exhibition draws from SFMOMA’s half-million-dollar acquisition of more than 100 Creative Growth artworks, the largest purchase by any American museum of the work of disabled artists,” said theTimes.

While New York City museums such as the Brooklyn Museum and the Museum of Modern Art have acquired a few pieces by artists with developmental disabilities, they are typically shown only as part of “special displays,” says The New York Times art critic, Jonathan Griffin. He contends that what SFMOMA is doing is ground-breaking.

“The acquisition is part of a partnership with Creative Growth through which the museum, led since 2022 by the director Christopher Bedford, pledges to introduce more art by developmentally disabled people from the three Bay Area organizations into its collection displays, and consequently into the canon of modernist art history.”

When someone needs a wheelchair, they and their family may need to make some tough decisions. Should they move to a ranch where everything is on one floor? Should they find a home that’s already been designed for a wheelchair user? Or would it make sense to renovate their current residence?

For this week’s blogpost, we researched each of these options. Here’s what we learned:

Option 1: Moving to a ranch home

Finding a ranch home, especially in the southern and western regions of the United States, is relatively easy. Keep in mind, however, that most one-story homes will still need remodeling to make them fully accessible. For example, some ranch homes have steps to their entryways so homeowners may need to add wheelchair ramps or lifts. Doorways and hallways in ranch homes may need widening to accommodate wheelchairs; bathrooms probably need expansion; and shower entrances must be renovated so that they are flush with the bathroom floor. While such renovations can be costly, some states offer programs that can offset the costs. Medicaid may also provide some financial assistance.

Option 2: Finding a home that’s already accessible.

Unfortunately, homes that are truly accessible for wheelchair users are hard to come by. “I see people who think they’re going to find that perfect accessible house, and I have to tell them that it’s just not out there,” says Johnson, a C5 quad and realtor who was interviewed by New Mobility magazine.

James Lee, another wheelchair user and realtor interviewed by New Mobility, pointed out that many homes that are advertised as wheelchair accessible are far from it. Both realtors recommended that homebuyers seeking accessible homes find realtors who are wheelchair users since they are more likely to see through misleading home listings and understand what wheelchair users need.

Option 3: Renovating the current residence

If you would prefer to remain in your home, start with a comprehensive home assessment by a professional who understands ADA compliance and pays attention to your particular wants and needs. Make sure that you feel confident in the assessor’s judgment and comfortable with the solutions they propose. According to the UDS Foundation, accessibility renovations may include the following:

• The addition of ramps
• Widening of doorways and hallways
• Accessible bathrooms and bedrooms
• Automatic door openers
• New (smooth) flooring and/or low-pile carpeting
• Stair and porch lifts
• Accessible lighting
• Emergency exits

After years of neglecting the needs of disabled travelers, the tourism industry has finally wised up to the fact that individuals with disabilities are as interested in travel as everyone else. Furthermore, the industry now recognizes that its past failure to accommodate the needs of the 25% of the public that lives with disability, has left a whole lot of money on the table. As Easterseals recently reported, “consumers with disabilities and their families activate more than $22 billion in buying power and have $490 billion in disposable income.”

Hence, the tourism industry is evolving. Nowadays, there are travel agencies that specialize in finding disability-friendly tours and accommodations; websites and apps that help disabled tourists find the most accessible routes to their destinations;  resorts with specially designed programs for children with disabilities; and even airports with sensory rooms.

Despite these advances, most wheelchair users still dread the thought of air travel. That’s because their wheelchairs are frequently damaged when they fly. Indeed, statistics show that 31 wheelchairs are damaged by airline personnel every single day. According to Easterseals, 11,000 wheelchairs were damaged in 2022. 

But there is good news on the horizon.

On Feb. 29, U.S. Transportation Secretary Pete Buttigieg announced a new proposed rule that “would require that airlines meet rigorous standards for accommodating passengers with disabilities safely and with dignity.” If approved, the proposed rule would be largest expansion of rights for wheelchair users since 2008. The public has 60 days (since Feb. 29) to comment on the proposed rule.

Among other things, the proposed rule would “mandate enhanced training for airline employees and contractors who physically assist passengers with disabilities and handle passengers’ wheelchairs and specify actions that airlines must take to protect passengers when a wheelchair is damaged during transport.”

The rule would also give the Department of Transportation more leverage “to hold airlines accountable when they damage or delay the return of a wheelchair by making it an automatic violation of the Air Carrier Access Act (ACAA) to mishandle wheelchairs.”

While most disability activists are pleased that this issue is getting attention, some wish the rule went further and provided more detail in terms of what would be expected of the airlines. Ideally, activists would like to be able to remain in their own wheelchairs during flights.  While we may not see that anytime soon, DOT reports that the agency has “begun preliminary groundwork” on a rule that would move us closer to that goal.

How will my child take care of herself when I’m not around? Will my child ever be able to live independently? How will he learn the skills he needs to manage a household?

If you are the parent of a child with disabilities, you’ve probably asked yourself these questions at one time or other.

One high school in Nazareth, Pennsylvania, is providing answers that are reassuring to parents and empowering to youngsters with disabilities.

Recently, Nazareth Area High School created a “simulated apartment” where students with disabilities can practice skills of daily living. According to Kurt Bresswein at The Express-Times/TNS and Disability Scoop, the “apartment,” which was previously an ordinary classroom, is the brainchild of AJ Kise, the school’s director of special education.

“Imagine a world where every student, regardless of their abilities, walks through the doors of opportunity—a world where barriers crumble, differences are celebrated and education empowers all to reach their full potential. Today we stand at the threshold of making that dream a reality,” said Kise at the apartment’s dedication and ribbon cutting.

Director Kise first conceived of the simulated apartment in fall 2022. After consulting with life skills teacher Chrissy Glasgow, he developed a proposal which he presented to the Nazareth Area Schools Superintendent Richard Kaskey and Assistant Superintendent Isabel Resende. Once the proposal was approved, the project took about two years to get off the ground. Local foundations, businesses, Nazareth Area Schools maintenance, operations and facilities staff, school families and Nazareth community members all contributed to making the simulated apartment a reality.

This year, 25 special education students at Nazareth Area High School will have use of the apartment to learn skills such as “food and kitchen safety, laundry, budgeting, planning and organization, social skills, and independent living skills such as personal hygiene, home maintenance and safety procedures.”

Superintendent Kaskey said the apartment will provide students with “a safe environment in which to make errors and experience repercussions, while they gain confidence in growing the skills they’ll need to thrive as adults.”

Said Assistant Superintendent Resende: “This simulated apartment is not just a space, it’s a springboard. It will be a training ground where our students with special needs can develop essential skills for living independently, but more importantly they’ll gain confidence, self-reliance and the belief that they are capable of achieving anything they set their mind to.”

Even if you didn’t watch the 66th Annual Grammy Awards ceremony held on Sunday, Feb. 4, you probably heard a lot about it. Taylor Swift, Joni Mitchell and Tracy Chapman were all over the news, and rightly so.

But you may not have known about another Grammy Award winner who deserves serious accolades. Annie Ray, an orchestra director and performing arts department chair at Virginia’s Annandale High School took home the Grammy’s 2024 Music Educator Award. The award “recognizes educators who have made a significant contribution and demonstrate a commitment to music education.”

Ray was chosen from among 10 finalists because of her advocacy work on behalf of students with disabilities and their parents. One example of Ray’s work is her creation of a Parent Orchestra, wherein nearly 200 caregivers of children with disabilities are taught to play their children’s instruments. She is also the creator of the Crescendo Orchestra program, which teaches students with severe developmental and intellectual disabilities to play music and provides opportunities for them to perform together.

Though Ray didn’t appear on the televised Grammy Awards show, she was invited to the ceremony in Los Angeles and received her own award at the Recording Academy’s Special Merit Awards Ceremony on Sat, Feb. 3.

In an interview with NPR, Ray said that the award really belonged to her students. “I’m just lucky enough to have been a part of their journey and their process and to have been taught by them…They completely changed my educational philosophy and approach of what it truly means to meet a student where they’re at and apply that elsewhere,” she added. “I believe they have a truly powerful message to share with everyone, and especially with how we look at approaching music education and what that looks like.”

In addition to the award itself, Ray received a $10,000 prize and a $10,000 matching grant for her school’s music program. She plans to use some of the grant money to buy new instruments – especially cellos and double basses. Ray also plans to start a scholarship for aspiring musicians and music educators.

PBS Kids has long been a trailblazer for making children’s television and online content inclusive of people with disabilities.

From Julia on “Sesame Street” to Macks on “Daniel Tiger’s Neighborhood” to AJ on “Hero Elementary,” the media company has made a point of including characters with disabilities in its programming, and depicting disabled characters in positive, not stereotypical ways.

In November, the media company announced plans to debut “Carl the Collector” its first show to feature a leading character who lives with autism.

Created by New York Times best-selling illustrator and author Zachariah OHora, “Carl the Collector” chronicles the experiences of Carl–a raccoon with a passion for collecting things–and his neurodiverse and neurotypical group of friends. The show is recommended for children ages 4-8.

In a press release, Sarah Dewitt, Senior Vice President and General Manager of PBS Kids, said the series, “values inclusion and empathy, while modeling relationship building and social skills development, wrapped up in humor, heart, and incredible visual design… We’re excited for children to get to know Carl and his group of friends, who believe that the best experiences occur when we honor the things that make each of us unique.”

In order to ensure accurate portrayals of its neurodiverse characters, PBS Kids consulted with an advisory team that includes psychologist Geraldine Oades-Sese, Ph.D., educator Deborah Farmer Kris, MA, and Professor Dr. Stephen Shore, who has autism.

Dr. Shore told PBS Kids he was “amazed at the level of detail and effort the team expends to assure that Carl [and another character called Lotta] are authentic to the autistic experience. In addition to being an interesting series, ‘Carl the Collector’ will become a great tool for both autistic and non-autistic people to gain insight on autism. Although designed for young kids, I plan on using relevant excerpts to supplement my university teaching and presentations around the world.”

In addition to receiving advice from Dr. Shore, the show will also include the contributions of neurodiverse writers, and voice actors.

Said advisor Dr. Oades-Sesi: “It’s about time for a children’s show like ‘Carl the Collector,’ which embraces the diversity of children’s experiences, and showcases an inclusive and relatable world. The show doesn’t shy away from having its main characters experience common mental health, challenges, such as anxiety, fear, sadness, and the need for acceptance and belonging. Carl and his Fuzzytown friends take viewers on fun and humorous adventures that will help them understand and empathize with the characters, and ultimately extend that understanding and compassion for others.”

Illustration via Fuzzytown Productions