The celebration of Black history is a 12-month affair. However, year after year, Black disabled history has been excluded and erased from annual February discussions. Trailblazing African American women such as Harriet Tubman, Fannie Lou Hamer and more have been lauded for their accomplishments and political activism, but their disabilities — and the importance of its visibility — is often overlooked.
Photo : Katelyn Shufelt Photography
Tubman experienced sleeping spells that Black historians later determined were epileptic seizures due to a two-pound blow to the head as an enslaved youth. As a young child, Hamer had polio and after a beating in a Mississippi jail, the activist lived with a blood clot in her eye and leg damage.
According to the National Center on Disability and Journalism, over 6 million Black Americans live with a disability of some kind. Additionally, the community has the highest rate of disability than any other demographic at over 20%.
Nonetheless, Black women creatives, authors and content creators living with disabilities have long been amplifying their lived experiences, fostering community and leading the charge for substantive change.
Crutches & Spice takes on disability rights
“There’s this commodification of disabled bodies, but there’s also this ignorance of it to complete erasure,” 30-year-old Imani Barbarin told TODAY via Zoom. “We always have this conversation around Black representation or ‘representation matters,’ and nobody ever asks for Black disabled people. Pop culture exacerbates this idea that disability is only something that affects white people.”
Barbarin is a communications director and the creator of Crutches & Spice, a site she launched in 2014 to write about her experiences as a Black woman with cerebral palsy. The Pennsylvania native joined TikTok in 2020, where she’s garnered over 91,000 followers merging sarcasm, comedy and disability advocacy and education in her content.
FAIRHAVEN — Brennan Srisirikul knew about the Easterseals Disability Film Challenge, but never had the confidence to submit a film — especially since he’s never made one. But after a crazy year, he knew it was time to go for it.
“With the anti-Asian murders in Georgia, it was personal for me, because I’m a mixed race,” Srisirikul said. “My dad is Chinese and my mom is American.” Srisirikul was born in Bangkok, Thailand and grew up in Fairhaven.
“My race wasn’t really ever something that I thought about,” he said. Srisirikul has cerebral palsy and has been in a wheelchair all his life. “I’m disabled. So, in my mind, for so long, I thought like that was the only thing people saw.”
But, Srisirikul said that during the pandemic he first faced anti-Asian racism. “The first time it ever happened, someone walked up to me and shouted in my face, ’15 Dollah! 15 Dollah!’”
Srisirikul also is a singer and actor. He wanted to create a short film that not only addressed racism but incorporated his background in musical theater. Alas, “BRENNAN! A New Musical, But Actually A Short Film” was born.
The short film stars Srisirikul opposite John M. Costa as Mike, his therapist. They discuss the impact of COVID-19 and Srisirikul wanting desperately to perform because of his new-found confidence for singing. Srisirikul struggled with his singing voice ever since he was 14.
“The most dramatic thing that ever happened to me was puberty,” he said
Click here to read the full article on Standard-Times
According to the Centers for Disease Control and Prevention (CDC), developmental disabilities affect approximately 17% of children aged 3 to 17 in the United States. As medical advances have continued, it’s become more likely that children with special needs may outlive their parents. According to the National Down Syndrome Society, the average life expectancy of a person with Down Syndrome is 60 today. In 1983, it was only 25.
JAMA Pediatrics suggests the lifetime costs for caring for a person with autism to be $2.4 million.
As parents and caregivers to children with special needs, we’re faced with challenges most can’t imagine. The University of Wisconsin did a study that demonstrated mothers of a child with autism had stress hormone levels similar to soldiers in combat!
This stress emanates from ongoing worry for the health and safety of your child, guilt that you did something wrong, feeling like you need to be an expert on your child’s physical or cognitive impairment, tirelessly advocating for medical treatments, school programs and accommodations — and paying for it all.
Here are five important considerations, along with resources, for parents of special needs children:
Emotional Well-Being for the Entire Family
Parents of children with developmental disabilities have higher rates of physical and mental health issues than parents of children without these conditions.
Are you taking time to look out for your emotional and physical well-being? Having a child with special needs places enormous stress on a marriage and other relationships. Too often, parents ignore their own mental health issues because they are understandably overwhelmed with caring for their child.
You can find a helpful list of support groups for parents of children with special needs here.
Planning and getting started early is critical for parents of special needs children.
Understand the ongoing estimated costs to help support your child. Set up a third-party special needs trust before your child turns 18. Inform and invite family members to participate in building financial security for your loved one. Anyone can contribute to the third-party trust and every little bit will help.
If your child is receiving Supplemental Security Income (SSI), paying for food and shelter from a special needs trust will cause a reduction in SSI benefits. That may be a worthwhile tradeoff if it’s the only way to meet preferred housing needs. You can pay for things like personal care, vacations or therapies not covered by Medicaid using the trust.
When you set up your estate planning documents, take the time to understand how to choose a trustee and trust protectors. The job of the trustee is to act in the best interest of the beneficiaries of the trust by safeguarding the assets of the trust and ensuring those assets are used as required by the terms of the trust.
A trust protector’s job is to supervise the trustee and protect the beneficiaries from any misconduct by the trustee. The trust protector can also perform other duties including replacing the trustee, assuming those powers are granted in the trust document.
The appointment of a trustee and a trust protector are among the most important decisions you’ll make to start building a support system for your loved one. A skilled attorney and advisory team can help make this difficult process less overwhelming and will be indispensable to you and your family.
As your child ages, don’t wait to start looking for housing arrangements. You’ll want your loved one to be comfortable with the new living arrangements, and you’ll also want to help when you are able. It may be really difficult for your family, but imagine how much harder it would be to find housing when you’re gone.
Letter of Intent
How will your child be cared for if you were no longer alive or able to do so? One thing you can do is start writing down information about your child that would be helpful to a new caregiver. Doing so is known as writing a letter of intent, and it’s one of the most important documents you can prepare for your child with special needs.
The letter of intent should include an overview of your child, information about daily schedules, diet, medical care, education, benefits received, employment, social activities, religious activities, behavioral issues and even funeral arrangements.
Once you address these issues, you may find comfort in knowing you have taken the time and effort to do your best to plan for the transition your child with special needs may ultimately confront.
Jeff Vistica, CFP™ (Certified Financial Planner), ChSNC® (Chartered Special Needs Consultant), AIF® (Accredited Investment Fiduciary) is the co-founding partner of Valiant Partners, a registered investment advisory firm, located in Carlsbad, Calif. Valiant Partners devotes its practice exclusively to serving the needs of parents with special needs children. Visit valiantfutures.com.
During Fall 2016, John Cronin began his senior year of high school and like most high school seniors, John began looking at his options for the career world. He was currently studying retail and customer service, but he also wanted to work in an atmosphere that was creative and enjoyable. Not liking any of the options that were currently available to him, John decided that the best way to find his ideal workplace was to create it himself.
That’s when John decided to team up with his father, Mark Cronin, who created small businesses online. After bouncing around creative business ideas that they could start, John decided that he wanted to start a sock company that specifically sold “crazy” socks.
“I wore crazy socks my entire life,” John said of his choice in business. “They are fun, colorful and creative. They let me be me.”
And thus, John’s Crazy Socks was born, an online sock company specializing in the exact brand of sock that John had come to love himself. The two got right to work in setting up their e-commerce platform, finding sock suppliers to support John’s dream and even shot some commercials that they posted to Facebook.
Despite technical difficulties on their first day, John’s business took off from day one. Orders began piling in from local members of his community who were made aware of the new business from the company’s Facebook videos. With such a positive response, John decided to step up his customer service game and make the first batch of deliveries extra special. He packaged each sock order in a red box accompanied with candy and a handwritten thank you note and made many of the first deliveries personally. As he arrived on the doorsteps of his customers with their orders, his customers began to post their purchases on social media, creating exposure and eventually attracting a larger demographic. In the first month of business, John’s Crazy Socks had shipped over 450 orders and earned over $13,000 in revenue.
But even with the excitement and success that came, the two businessowners decided that they wanted to do more than just sell socks, they wanted to help the organizations that were closest to them. So, from the beginning to now, 5% of all sales are donated to the special Olympics, one of John’s favorite organizations. From there, the duo decided that they wanted to expand their advocacy and create “awareness” themed socks. 10% of profits from these specially-themed socks support awareness efforts for Down syndrome, cerebral palsy, autism, Alzheimer’s, breast cancer and more.
“Everything we do is designed to spread happiness,” their mission statement reads. “The more we can do for others, the more we can make people happy, the better off we are.”
Entering their fifth year of business, John’s Crazy Socks is thriving now more than ever. Their inventory has expanded to include home apparel, mugs, greeting cards, accessories, masks and customizable socks. Customers can even sign up for a sock subscription club that delivers a new pair of crazy socks to your doorstep every month.
Additionally, the business strives to follow its four business pillars: Inspiration and Hope, Giving Back, Socks You Can Love and Making it Personal. Through these four pillars, John and Mark have additionally began to take part in speaking engagements, facility tours and social events where the two men advocate for people with differing abilities, especially in the workforce.
“We learned three things,” Mark said of his business venture with his son, “People want to buy socks; people want to buy socks from John, and this young man and this old man can sell socks.”
To order your own pair of socks and to learn more about the business, visit johnscrazysocks.com.
Effective recruitment and outreach are necessary to improve an organization’s pipeline of qualified applicants with disabilities. EARN’s evaluation of the research literature uncovered important implications in a number of areas, including: online messaging, outreach and recruitment, application processes and accessibility, and establishing partnerships to broaden talent pools. The following is a summary of research-based practices and elements of online outreach that increase the likelihood of attracting individuals with disabilities during the job application process.
Website features and approaches to online recruitment play an important role in influencing job seekers. Often, a company’s website may be the first step to forming perceptions of person-organization fit. Website messaging can affect how job candidates perceive and respond to online application/selection tools such as personality tests, work samples, and situational judgment tests. The perception of bias can even dissuade applicants with disabilities from applying to positions. Early-stage reactions to a company’s disability messaging can also influence employee decisions to disclose their disability to the employer. Their comfort-level in doing so can serve as an informal indicator of an employer’s success in achieving a supportive and inclusive workplace culture. Applicant reactions can include perceptions of fairness and justice, feelings of anxiety, levels of motivation, and a range of other experiences. Increasingly, researchers have been applying a justice lens to applicant reactions, looking at how interaction with online application/selection processes influence factors like employer attractiveness, applicant intention to accept the position, and whether an applicant would recommend the employer to others. There is growing evidence of additional relationships between applicant reactions and hiring outcomes, including acceptance of job offers, performance on selection tests, and possibly even job performance.
A content analysis of 34 corporate social responsibility reports from organizations nationally recognized for their disability inclusion efforts found that four practices were commonly used to promote disability inclusion efforts:
Diversity and inclusion statements
Employee resource groups
Supplier diversity initiatives
Targeted hiring and recruitment plans
Corporate social responsibility plans, in themselves, often highlight publicly desirable organizational practices, and are used frequently for the purpose of marketing and recruiting talent.
A study that analyzed the web content of 30 randomly selected Fortune 500 and Fortune 100 companies rating them for perceived openness to employing people with disabilities reported that several companies exhibited:
A lack of disability awareness
Weakly navigable, inaccessible websites
Difficult to locate accommodations information and diversity statements
Web-based recruiting constraints that exclude or alienate potential applicants with disabilities
Outreach & Recruitment
Disability-focused recruitment plans play an important role in advancing workplace inclusion and overcoming discrimination or bias in the job application process Recommendations from the literature focused on developing more sophisticated career websites that highlight the organization’s hiring goals, include employee testimonials, and give potential recruits deeper insight into the company’s values and policies. Researchers suggest personalizing recruitment processes by allowing candidates to build personal accounts on the website that go beyond an application form or procedure, and engaging in applicant tracking that involves recruiters and other collaborators, rather than relying solely on algorithmic filters. Recruitment practices, corporate advertising, and firm reputation all have direct effects on applicant pool quantity and quality. Organizations with comparatively high existing levels of advertising and reputation, such as more detailed recruitment ads and employee testimonials, are more impactful at broadening applicant talent pools. Technological practices, such as social media recruiting, can also limit talent pools by filtering out qualified candidates with disabilities. In one study of job seekers with disabilities, 50 percent of respondents reported using social media as part of their job search process, but of those, 40 percent experienced accessibility or usability issues, such as features they could not access at all or that were not user-friendly. Research also shows that organizations benefit from frequently auditing their hiring practices for continuous improvement and inclusivity, but this practice does not often occur.
Application Processes & Accessibility
One assessment of job seekers with disabilities’ experiences using eRecruiting tools found that 46 percent of respondents rated their last experience applying for a job online as “difficult to impossible.” Common challenges included complex navigation features, timeout restrictions, confusing or inconsistent instructions, and a wide range of general accessibility issues. Here are some of the things that made eRecruiting tools difficult to use:
Reliance on text embedded within graphics to convey directions or important information
Lack of alt text
Applications requiring mouse input
Lack of closed captioning
Inaccessible upload features
Lack of information on how to request an accommodation
Experts recommended that employers approach accessibility from both a usability and a compliance standpoint. They also acknowledged barriers in the areas of technology, logistics, cost, and complexity or unwillingness to approach accessibility challenges beyond the job application form itself. Ideally, accessibility improvements should include processes related to job sourcing, pre-employment testing, digital interviews, and the need to improve or modify the accessibility features of off-the-shelf technology platforms. Read EARN’s Checklist for Employers: Facilitating the Hiring of People with Disabilities Through the Use of eRecruiting Screening Systems, Including AI to learn more about evaluating the effectiveness and accessibility of online recruiting efforts. EARN’s Disability Outreach and Inclusion Messaging: Assessment Checklist for Career Pages is a useful tool to assess your organization’s career page(s) to ensure they appeal to candidates with disabilities and highlight disability inclusion.
Establishing Partnerships to Broaden Talent Pools
A survey of 6,530 supervisors at private, nonprofit, and governmental organizations across U.S. industries identified several employer practices that supervisors perceive to be highly effective for recruiting and hiring people with disabilities. The study indicated that establishing partnerships with disability organizations is a highly effective means of identifying qualified candidates, yet only 28.5 percent of organizations had implemented this practice as a means of recruiting employees with disabilities. Despite the few organizations utilizing this strategy, 75 percent of supervisors reported that this practice would be feasible to implement.
Because HR professionals often play an important role in developing the recruitment pipeline and online recruitment strategies, they should be aware of community agencies that can provide qualified candidates. By collaborating with vocational rehabilitation service providers and local job placement specialists, employers can tailor placement efforts, develop conduits for new talent, and enhance organizational education and knowledge on disability hiring practices.
This can take the form of more formal linkage agreements and long-term partnerships, or simply posting on online recruitment boards/resources aimed specifically at job candidates with disabilities. For more information, visit AskEARN.org.
Source: EARN (Employer Assistance and Resource Network on Disability)
By Sheri Byrne-Haber, Accessibility Architect @ VMware
Every day in the US, a conversation like the following occurs: Employee with disability: I can’t do X because of Y.
Some examples of this might include, “I can’t use this conference room because of the furniture configuration.” or “I can’t make coffee without asking for help because the supplies don’t have tactile labels.”
And the facilities manager replies, “The facility is compliant with the Americans with Disabilities Act.”
The disconnect between what employees with disabilities need and the status reported by facilities’ teams results from the facilities’ personnel not understanding that there is way more to physical work campus accessibility than the sign off by the inspector before the building was occupied.
Most post-occupancy campus accessibility issues fall into these broad categories:
Office Space / Conference rooms
Problem: There is a hashtag that sums it all up: Bathrooms are #NotACupboard. The bathroom may have been built to be ADA accessible, but once you start throwing stuff into it – I’ve seen packages of extra toilet paper, boxes of paper towels, a broken toilet from another stall and the ubiquitous mop and bucket – the clear space needed to turn a wheelchair becomes blocked and the stall is no longer accessible. Which is a really bad thing if only one accessible toilet is required.
Solution: Make sure the janitorial staff knows to put things where they belong and not in an accessible stall. Not your staff? You still might be held accountable since you contracted for the work, especially if there are complaints that go unaddressed. Put up signs that state clearly that people with disabilities have priority for using the accessible stalls. Have a number posted where people can call if there are issues.
Problem: From buffet lines, garbage can, and drink cooler door handles, to placement of coffee supplies, utensils and condiments, lack of food-related accessibility in an occupied workspace can be problematic for people with disabilities. Wayfinding for people who are blind is as much of a problem as placement height is for people with mobility issues or people who are short stature.
Solution: Make sure cafeteria staff have been trained on setting up buffet lines to ADA criteria for both spacing and height. Have a system for assisting people who are blind to easily find their way from point a to point b.
Office Space / Conference rooms
Question: What do furniture, whiteboards on wheels and plants have in common?
Answer: They are all things that are typically not present when the inspector issues an occupancy certificate.
Problem: Once people start moving things around, anything that gets shoved into a clear path becomes an obstacle ranging from the difficult to the impassable for someone with a wheelchair to get around.
Solutions: Identify on the conference room booking platform which conference rooms are normally ADA compliant, and which ones aren’t. Ask people not to move furniture around in the non-compliant rooms, or put it back the way they found it when they are done. Don’t allow employees to clog up clear space areas with anything, not even short-term craft projects. Don’t forget you may need to keep some conference rooms animal-free for people with disabling allergic reactions, and you may be asked for a quiet room with acoustic dampening, soft lights and bean bags for people who are neurodiverse.
Problem: Most everyone is now obligated to put up signs about COVID and hand sanitizing stations. There may also be single flow arrows and signage about spacing in elevators. How does anyone know the signs are there if they can’t see?
Solutions: Figure out a way to get information from temporary signage to people with vision loss who need it. Tactile maps or accessible HTML pages/email are just two of many ways to accomplish this.
Problem: You don’t have enough space for that event everyone wants to go to. Can you have it in the parking lot or on the grass?
Solution: Not without some really careful planning. Grass is not safe for people with mobility issues. Temporary flooring needs to be used to create an accessible path. Parking lots are dangerous unless there is lots of security directing cars away and nearby accessible parking is planned for.
Problem: Digital accessibility is just as important as physical accessibility for candidates, vendors and employees with disabilities
Solution: Make sure all online maps have text descriptions and that all websites comply with WCAG 2.1 Level AA accessibility criteria.
Post-occupancy activities can trigger many access issues for people with mobility issues, vision loss and other disabilities
Keeping a building “ADA compliant” requires constant vigilance, not just a one-time inspection
Sheri Byrne-Haber has been working exclusively in the intersection of business, disability and technology for more than 15 years. She previously built a global accessibility team at McDonald’s and is currently doing the same for VMware. She has degrees in IT, law as well as business and is CPACC and ADA certified.
Odd couple Benton the Great Pyrenees and Boone the disabled raccoon are best friends helping each other make it through life with a positive attitude.
The duo lives at Nolin River Wildlife Sanctuary in Glendale, Kentucky — a sanctuary dedicated to nursing wild animals back to full health.
“Boone was diagnosed with a rare disorder, cerebral hypoplasia, that makes it very difficult for him to get around,” Mary Key, Nolin River’s founder, tells PEOPLE. “He came to us as a baby, and when it was time for him to start walking, I noticed there was a problem.”
Hoping to help Boone with his walking skills, Key looked up wheelchairs for animals on the internet but found that the nonprofit couldn’t afford the options available. So she reached out to a friend at nearby Central Hardin High to see if the school’s engineering students could help. The engineering teacher, Russ Pike, replied it was the perfect real-world project for his students.
“From the first time they brought Boone to class for the kids to meet him, they were fully on board. It’s pretty neat. Most of the time, you’re trying to get kids involved and engaged. Well, we had to reign them in because they were so excited,” Key says of the enthusiasm for the project.
Over the past few months, Boone regularly visited the high school so the engineering students could measure the raccoon for fittings and make adjustments to their prototypes. After a bit of tinkering, the students came up with a wheelchair — their third prototype — that worked for Boone.
“It’s amazing! The look on Boone’s face when we first put him in it … I was crying. He gets really engaged and gets a very purposeful look, and when he first moved in the chair, you could see him looking like this is different, and this is good,” Key says of Boone’s reaction to the custom creation. “He is absolutely adorable and unbelievably sweet, and now he can get around on his own.”
Broadway star Ali Stroker says she always felt like her “most powerful self” when onstage, and now as the co-author of a new book for kids, she’s trying to empower others.
Broadway star Ali Stroker says she always felt like her “most powerful self” when onstage, and now as the co-author of a new book for kids, she’s trying to empower others.
Stroker teamed up with her friend and middle grade author Stacy Davidowitz and set out to create a familiar character: a young girl in a wheelchair named Nat who wants to perform in a local musical.
“The Chance to Fly” — published this week — was a way for the actor to share her own experiences as a person with a disability and big dreams. Stroker, who has used a wheelchair since a car accident paralyzed her when she was 2, says she wanted to help kids with disabilities recognize themselves in the book. Even before winning a Tony in 2019 for her role in the Broadway revival of “Oklahoma,” Stroker served as an example of a person who doesn’t let limitations prevent her from achieving her goals. She made history as the first actor in a wheelchair to win the award and dedicated it to all kids with disabilities waiting to be represented in theater.
Stroker said she was driven to write “The Chance to Fly” because she didn’t have any stories like it to read when she was in middle school. In a recent interview with The Associated Press, Stroker talked about the challenges of writing a story similar to her own, representing people with disabilities, and naming her wheelchair.
AP: Nat loves musicals and performing. How did performing make you feel at her age?
Stroker: On stage, I felt like I was my most powerful self because people were looking at me and staring at me. But it wasn’t just because of my wheelchair and it was a safe place to be different kinds of people. For a long time, I felt like I had to be, you know, like happy and OK and inspirational for other people. And when I was on stage and I was playing a character who was going through something, I got to express all those other things that were living inside of me. Writing this book as well and going back to those really vulnerable, scary, first time moments was so healing. And I think teenage Ali was just really brave and really tough. And I feel so proud of where I am now.
AP: Nat sometimes feels embarrassed about her wheelchair. Was it hard to write about that?
Stroker: It was a challenge for me to go back to those moments. One of the ways I describe it is just like you feel like you’re like so hot and you feel like people are looking at you for the thing that you are most self-conscious of, and maybe the thing that you have the most shame about. And it’s just overwhelming. But I wanted to write it because whether you have a disability or you’re in a wheelchair or not, you have those self-conscious and really difficult moments in your life, especially as a teenager, when you just want to be like everybody else, but you’re not like everybody else. And the reason it needed to exist in this book is because I want young people to know that they’re not alone in feeling like that.
AP: The adult directors of the show cast Nat but tell her she doesn’t have to dance, which upsets her because doesn’t want special treatment. Why was that important to include?
Stroker: What’s so beautiful about living with a disability is that your creativity to solve problems is so accessible. It’s so heightened because this is a part of your everyday life. Nat is really disappointed, but then she goes away and she shares with her friends, her peers what’s going on, and then they offer to help her and they are going to not wait for the adults to solve the problem, but they are going to come up with the answer. That’s an ideal situation when you can ask your home team, the people that you trust the most for help, and then you can come up with a creative solution.
Click here to read the full article on the Sentinel-Tribune.
April is Autism Acceptance Month. It’s a good time to rethink not only how non-autistic or “neurotypical” people can best support autistic people –– but also how non-disabled people in general can do better in supporting people with any kind of mental, developmental, or physical disability. There’s no shortage of good intentions. Most people if asked would say that they at least want to do right by people with disabilities. But being a good disability ally requires more than goodwill.
The disabled community is well past the point of being satisfied with simple recognition or mere shows of support, as we might have been 30 years ago. We’re not even looking for advocacy, if it means non-disabled people speaking for us, defending their perception of our rights without our full participation or consent. It’s always important to do the right thing when you can, and to be counted on the side of disabled people and our needs. But it’s even more important to discover and center disabled people’s concerns, priorities, and preferences, even if you don’t always understand or agree with them. We need allies fighting with us, not just advocates fighting for us. Fortunately, we seem to be gaining more genuine allies every year. That’s worth celebrating.
Still, as more people learn about disability issues, it’s important to be alert for ways that disability allies can lose their way. The following are three of the most common ways that even the best, most committed disability allies can go wrong.
1. Listening to disability awareness seminars instead of disabled people.
Articles and training on disability issues and etiquette are certainly valuable. They can be especially useful for people just starting to learn disability issues. Formal training can teach the basics of how to behave towards disabled people in social situations. You can learn a bit about how everyday accessibility problems affect disabled people. And you can start to get some rough guidelines on common questions, like whether or not to ask disabled people about their disabilities, or what terminology to use and what to avoid.
But disability awareness seminars and webinars are no substitute for listening to actual disabled people. Our individual views and preferences don’t always match the standardized rules of “disability awareness.” Some of us want to be left alone; others crave interaction. Some of us invite questions and are happy to explain our experiences. Others of us feel besieged with people’s curiosity and want to choose when and how we will “educate” people about disability. Practical accessibility affects each disabled person differently too. Some of us are more bothered and confrontational about it than others. And we have different opinions on disability terms. Some, like the “R-word” for intellectual disability, are clearly off-limits. Others, like whether to say “person with a disability” or “disabled person,” are still open to debate and personal taste. Rules and philosophies learned in advance can help, but they will only get you so far.
The worst thing you can do is lecture disabled people you meet in real life on how we should process our own experiences. Yet, this happens, a lot. It’s entirely possible, even common, to meet disabled people whose views on disability are different from what you’ve been taught. Regardless, never tell or imply to a disabled person that you understand disability issues better than they do – even if you have reason to believe that might really be true. If you find yourself thinking that a disabled person’s views on disability issues are wrongheaded or uninformed, and that it’s your job to enlighten them – stop yourself. Think about it carefully, and proceed only with great caution. Or, leave it alone, and respect the opinions and choices of the disabled person you are talking to.
You might do a double-take when actor RJ Mitte, most famous for his role in the acclaimed AMC drama, “Breaking Bad,” gives you his take on disabilities.
“The best thing about being human is that the ability to overcome is amazing,” said Mitte, 28, who was diagnosed with Cerebral Palsy at age 3. “There’s no trick in life. Whether you’re 19 or 45, you can still set out and do what you wanted to do at 19.”
Second best thing?
“I believe if you have a disability, you have an asset. You’re coming from a different human condition.”
Mitte became a TV fixture with the debut of “Breaking Bad” in 2008 (the show ran for five seasons). “Bad” won 16 prime time Emmys and two Golden Globe Awards, among a slew of other accolades.
Bryan Cranston portrayed a middle-aged chemistry teacher – Walter White – diagnosed with inoperable cancer. Driven by financial concerns and a shortage of time, he started cooking the purest crystal methamphetamine in Albuquerque, New Mexico, and making top dollar on his way to running an empire.
Mitte played Junior, White’s sweet, sarcastic and, ultimately, conflicted son.
For the role, Mitte had to exaggerate his Cerebral Palsy symptoms; unlike Junior, Mitte doesn’t use crutches or speak with a pronounced slur. However, the 28-year-old actor has faced many of the same medical and social challenges as his character.
“People with CP overcome hurdles every day,” Mitte told Brain&Life Magazine. “One thing I’ve learned from my disability is that when there is an obstacle, you adapt and grow. You can’t let that obstacle break you down and discourage you.”
When asked how Hollywood is faring when it comes to placing actors, directors and producers with disabilities in places of power and esteem, Mitte says he sees more opportunities than ever.
“You can’t make a movie now without the diversity talk, “he said. “You’ve got to say: ‘We need diversity.’”
And his view on what the industry’s doing as far as physical accommodations?
“Are the accommodations always there? No.” he said. “I try to make my own accommodations.”
But Mitte, who’s involved with SAG-AFTRA as a member of the union’s Performers With Disabilities Committee, says he’s seeing a change; a mutual effort.
“The key thing in everything is when both sides want it.”
Breaking into Stardom
Born in Jackson, Mississippi, Mitte was adopted shortly after he was born by Ray Frank Mitte Jr. and his wife, Dyna. He was a happy child who walked on his toes as a toddler – something doctors told his parents they would fix by the age of 4 if he didn’t walk properly by then.
A friend of Mitte’s grandmother recognized the signs of CP when he was 3 and urged the family to have him evaluated. After he was diagnosed, Mitte was then fitted with leg braces to straighten his limbs and used crutches throughout most of his childhood.
However, over time, his body became stronger through sports and exercise and he no longer needed any walking devices by his teenage years.
In 2006, Mitte moved with his family to Los Angeles, where his youngest sister, Lacianne Carriere, received an offer for a role in a film project. He became interested in film and took acting lessons, which then led to appearances on SHOWTIME’s “Weeds,” NBC’s “Vegas,” CW’s “Everybody Hates Chris” and a co-star role on ABC Family’s hit show, “Switched at Birth,” before being cast in his life-changing role on “Breaking Bad.”
Mitte then reemerged on the big screen in “Dixieland” – his first non-handicapped leading role. Following that, he starred opposite Wesley Snipes in “The Recall” and was also seen in “Tiempo Compartido” (an official 2018 selection in the World Cinema Dramatic Competition at the Sundance Film Festival).
In 2018, he starred alongside John Cusack and George Lopez in “River Runs Red,” and also guest starred on Starz’ coming-of-age television thriller, “Now Apocalypse,” which premiered in early 2019.
In 2020, he portrayed a disabled teen who seeks acceptance as a high school wrestler with Oscar winner Terrence Howard as his coach in “Triumph,” which was delayed because of the Coronavirus crisis. He also started shooting “Issaac,” a romantic thriller.
Most recently, Mitte turned to modeling as a celebrity face and model of GAP International’s “Lived in Spring” campaign, with his image appearing on mediums such as billboards, buses and life-sized posters in cities across the world from Tokyo to Dubai and across the U.S. He made his way to the catwalk, modeling in Men’s Fashion Week in Milan, Berlin and New York City for designers Vivienne Westwood, soPopular and Ovadia & Sons.
Cutting the Bullying
Aside from coping with his physical challenges, Mitte also faced his share of taunting and bullying as a child.
“I was verbally harassed, knocked down, and even had my hand broken,” Mitte told Brain&Life. “Having CP made me a target for bullies, and I learned that kids with disabilities are twice as likely to be bullied as other kids.”
To bring awareness to bullying and prejudice, Mitte has engaged in public speaking and serves as the official ambassador for United Cerebral Palsy and Shriners Hospitals for Children and partners with Shriners to spearhead its #CutTheBull campaign to advocate anti-bullying for children with disabilities.
Mitte has involved himself wholeheartedly in anti-bullying, through #cutthebull.
“Everyone bullies, not just kids,” he said. “I find with bullies that removing yourself from the situation is sometimes best… because a bully wants you to fight, they want an adversary.”
And if that doesn’t work?
“I always recommend to talk to your peers, talk to your allies.”
Mitte used every defense in his arsenal when he was bullied as a youth.
“Did it end the way I wanted it to end? Not always. I asked bullies straight out: ‘Why do you want to hurt me? Maybe you need help.’” And Mitte stresses that, often, you can’t go it alone, and to prioritize your own health and safety.
A Dream Sequel
Mitte has projects in the works, but one project — a dream, really — is never far from his thoughts.
He’d like to see a sequel to “Breaking Bad” in which Junior follows in his dad’s footsteps. You might call it Heisenberg 2.0. Better, more enriching, maybe, more evil. The kind of follow-in-pops’-footsteps that you don’t want to encourage in real life, but you might want to watch on TV.
And in true Mitte form, he’s pitched it more than once.
There are, of course, doubts. Could people see Junior in such a dark role? How do we make that happen? How can we keep the plot seamless and still make you a villain? There are a million moving parts.
At this point, here’s one more thing you must know about Mitte.
He’s not big on the word “can’t.”
“I grew up with can’t not being a choice,” he said. “You can’t what? No, you’re going to go do this.”
It’s what he tells people with disabilities who ask him about obstacles. “Before “can’t” can even get out of the starting gate, just start doing the thing you want to do.”
If “can’t,” as Mitte said, is a decision, then his dream-role is just a greenlight away from becoming reality. He wants it. He’s envisioned it. He’s never stopped pitching.
Walter White Junior, sweet and devoted son, breakfast connoisseur, as the baddest of bad guys? Drug lord? Killer?
You might do a double-take.
Look again, and imagine not what is impossible, but what is possible.
For Abby Williard, school always felt like a slog. Growing up in a small town in central Pennsylvania, Williard couldn’t seem to complete her schoolwork or stop daydreaming in class. Although she has anxiety and depression, she felt like something else was at play.
“I would cry in class because I just couldn’t handle it, I couldn’t take it,” she said.
At points, Williard gave up on trying to succeed in school: She nearly failed several classes and was so quiet that teachers would sometimes mark her absent. But one day when she was 16, years of confusion gave way to “a huge moment of clarity.”
Williard took note as her mother mentioned a file from her school psychologist during a counseling appointment. She watched as her mom handed the file to the social worker to make a copy, then stuck the papers back in her purse. Later that night, Williard rummaged through the purse to find the file, a psychological evaluation from when she was 12. On that file was a mysterious classification, one neither her mother nor her school’s psychologist had since talked to her about: sluggish cognitive tempo.
“I had never heard of that my whole life,” Williard, now 19, recalled.
Williard sometimes thought that she had ADHD, or attention deficit hyperactivity disorder — though she was never diagnosed — because she had trouble paying attention, but other symptoms, like hyperactivity, didn’t fit her well. As she researched sluggish cognitive tempo, or SCT, online, the symptoms seemed just right: a problem with focusing was there, too, but also daydreaming, slow or “foggy” thinking, and a general lack of energy.
“I was just like, oh, my gosh, that makes so much sense,” Williard said. “Everything just started to fall into place.”
But SCT is not an officially recognized diagnosis. It’s currently what’s called a clinical construct — a term used in psychology to define a group of behaviors. Since its emergence nearly four decades ago, the study of SCT has been led by a small group of researchers, chief among them a controversial psychologist and ADHD expert who is adamant that SCT is a separate disorder potentially affecting millions of children and adults. If SCT became an official diagnosis, proponents argue, it could make it easier for those with symptoms of the construct to get the help they need, whether that be assistance in school or work or a medication that is more likely to work for them. But many researchers say the study of SCT, which is still in its early stages, can’t yet support a formal diagnosis. Critics dismiss the construct as fatally flawed and argue that SCT is an outgrowth of misdiagnosis of ADHD that could result in many being prescribed inappropriate medications.
While SCT remains in categorical limbo, Williard and others aren’t waiting for a scientific consensus. Many have found validation in a growing online community for SCT — a Facebook group counts more than 800 members, while an SCT community on Reddit has over 4,000. In their view, SCT has negatively shaped their lives, affecting everything from their mental health to their ability to pursue a fulfilling career. And in the absence of approved treatments, members crowdsource potential therapies.
“It really was nice to find other people that were like me,” said Williard.
The leading advocate for SCT, clinical psychologist Russell Barkley of Virginia Commonwealth University Medical Center, has been working for years to get the construct recognized and investigated by other psychologists. He’s written extensively on SCT, both in academic journals and online resources; given numerous talks on the construct; and has developed a rating scale for SCT in children and another for adults.
In the 1980s, a debate emerged among ADHD researchers as to whether two subtypes of ADHD, called predominantly hyperactive/impulsive and predominantly inattentive, could actually be separate disorders. Ever since, some researchers have examined that predominantly inattentive subtype and found that related characteristics — those eventually associated with SCT, like drowsiness, daydreaming, and lack of energy — seemed to be different than those associated with ADHD. The name sluggish cognitive tempo, Barkley said, comes from a 1984 dissertation and a related 1986 study that tested a teachers’ rating scale to identify traits associated with student behavioral concerns. One of these was “sluggish tempo” and seemed to define a distinct group of students.
Stirred by an influential 2001 paper on differences between predominantly inattentive ADHD and its other subtypes, Barkley argued in a related commentary that some people with symptoms of this inattentive subtype were very different than others with ADHD, which he thought could indicate that the inattentive subtype was a distinct disorder. Over time, he said he and others found that what distinguished these people were their SCT symptoms, and that it could be SCT, not inattentive ADHD, that was separate. By 2013, he had developed rating scales for SCT in both adults and children, which includes symptoms like losing one’s train of thought and tending to stare off into space.
“I’m willing to go out on that limb, as I did in the year ,” Barkley said in an interview. “If this pattern continues the way it is right now, this will be a new disorder.”
But Barkley is one of the few, if not the only researcher who is willing to call SCT a disorder. Even Stephen Becker, an associative professor of pediatrics at the Center for ADHD at Cincinnati Children’s Hospital Medical Center and a frequent collaborator of Barkley’s, believes it is too soon.
“I think there’s just a huge amount of research that needs to be done to support a new mental health disorder,” said Becker. “It’s still quite a small field.”