Topic: Understanding Difference

Digby Webster and Tracie Sammut have made waves in the art and TV world – but successes aside, both face an uncertain future.

Digby Webster, a widely exhibited visual artist, was born with a genetic disorder known as Down Syndrome. Tracie Sammut, an actress who has been featured in classic Australian TV shows such as Home & Away and GP, and received a prestigious Logie Award for Special Achievement in 1993, shares this disability.

Digby, 30, and Tracie, 39, still live at home in the care of their families, who are anxiously watching as they take their first tentative steps towards independence.

Flying Solo follows Digby, Tracie and their friend Tom, 36, over the course of four years as they pursue their new lives, juggling their passions with new responsibilities.

Digby tackles fundamental skills such as money management and cooking, even undertaking a new job as he prepares for his newest exhibition. Meanwhile Tracie decides to take Tom under her wing and train him as an actor. But for Tom – now living on his own – pursuing his dreams of professional acting proves an uphill battle as he finds himself struggling with time-management, household chores and depression.

The trio’s journey is chronicled in Flying Solo, a feature documentary directed by Australian-American filmmaker Ehsan Knopf, which premiered online on March 21, 2018, World Down Syndrome Day.

The film, made in close collaboration with its subjects, captures their hopes and the hurdles they – like many people with intellectual disabilities – hit along the way. It features frank discussions about disability by the subjects and their friends and families, as well as inspirational scenes of mentorship and friendship.

A social impact documentary, Flying Solo pulls back the curtain on the unexpected strengths of disability, revealing the unique contributions people with conditions like Down Syndrome can make to society. It also aims to inspire change around a chronic lack of access to supported accommodation, which maximizes independence for people with disabilities.

“People with disabilities need to be heard,” Digby Webster said. “I hope the film will show people a different kind of world and also help to create a more open and inclusive community.”

Flying Solo, which first began as a student short film in 2013, was inspired by the filmmaker’s discovery, as an adult, that he himself had a disability. Filmmaker Ehsan was 26 when he got the life-changing diagnosis of Asperger’s Syndrome, a form of autism. A year later, a friend showed him Digby’s artwork, prompting him to get in touch with the artist and make a film about his journey.

After meeting Tom and Tracie, Ehsan expanded the scope of the documentary to include their stories as well, encouraging Tracie and Tom to work together. The result was a series of acting workshops featured throughout the film.

Flying Solo can be watched online on Vimeo On Demand.

I have what’s called a facial difference or deformity. I was born with it, kind of. I’m not sure of the full story behind what happened to me, but I do know I spent the first six months of my life hospitalized as a result of something called a hemangioma. A hemangioma is a benign tumorous growth of blood vessels on the skin. My hemangioma went away but left a significant amount of scar tissue on one side of my face; it also blinded me in one eye and resulted in me having to wear a tracheostomy up until I was about three years old. Fun stuff! Every summer up until I was eleven years old, I’d have reconstructive surgery to correct the scars. I was very fortunate because in spite of my visible difference, my parents raised me the same way as my older sister. I went to regular school, we went on family vacations, and I got in trouble when I was bad. Just kidding, I was never bad! My mom and dad always encouraged me to be whoever I wanted and accepted me for who I am. My parents also made an effort to protect me from a world that was not always so kind and when they no longer could, we came up with a short speech I could give children who asked the inevitable questions about what ‘happened’ to me; I’d tell them I was born with something that left scars on my face but the doctors are trying to fix it. I still use parts of this speech when people inquire about whether or not I was in a car accident or fire.

If you’ve seen the film Wonder or read the book, you know that the main character, Auggie, a little boy who is born with Treacher Collins syndrome, is homeschooled until 5th grade; I obviously was not. Starting school is confusing for everyone, but starting school when you don’t resemble the rest of your classmates is even more confusing. I attended a private school in New York City and although I was never outwardly made fun of by my peers for the way I looked, I had a few classmates that made sure I knew they thought I was inferior to them. In my opinion, it was a projection of their own ignorance and lack of empathy. I often felt alone and excluded but I never connected the dots, and even though I dealt with kids (mostly boys) on the playground or at day camp who called me names or ran away from me in fear, I never really thought about the fact that other kids didn’t have surgeries every summer or had seen more doctors since birth than their age number. When I was in 6th grade, I became more aware that I was different looking from other girls in my grade and through a series of events over the next couple years, I got a taste of what that would mean for me for the rest of my life. It means that I will most likely always put people off initially and that no matter where I go or what I do—nothing changes who I am. Growing up, there were a lot of things I never did because I was afraid of how I’d been received by kids I didn’t know, something I deeply regret because I think knowing the world was bigger than my school would’ve been extremely helpful to me back then. When I first got social media, I never uploaded pictures of my face. It’s almost laughable now because if you could see my Instagram you would see that I post tons of pictures of myself. It’s taken a long time for me to feel comfortable with my appearance. Self-love is hard and even though I’m much more confident now, there are still things I don’t do because I’m afraid of how I’ll be received.

The truth is I’ll never be normal and sometimes I wonder whether certain things just aren’t in the cards for people who look like me. My difference or deformity will always be a thing that requires an explanation. Most recently, I had a woman who was waxing my eyebrows ask me if it was okay to wax around my mouth because of my ‘burns’. Beauty is a privilege. It’s easier to be brave when you’re beautiful or even just normal-looking. It doesn’t mean your life is easy or perfect, but the fact is, we live in a society where physical appearance is regarded as a measure of worth and is rewarded as a badge of honor. When you’re constantly being reminded that your physical appearance is problematic, it’s going to inform your behavior, your feelings, your relationships, and everything else.

I’m not asking you to feel bad for me. My difference doesn’t stop me from having a great life full of friends and family who love me. It doesn’t stop me from having amazing co-workers and casting people to be on cool reality TV shows. It doesn’t stop me from being a huge wrestling fan or loving the Muppets. Though I’m currently single, I’ve been in relationships before. I know that my facial difference will always be an eventual topic of discussion, just like I know when people meet or see me for the first time a little red button of curiosity goes off in their heads. To me, that’s perfectly reasonable and fair. Fielding questions from strangers about what’s “wrong” with me is not my favorite thing in the world, but it’s something I’ve learned how to handle. My facial difference is not all of who I am, but it’s certainly a part of it and my experience living with it is the basis for a lot of why I am the way I am. I’m not afraid to be seen and I’m not ashamed, because I have no reason to be. It should be possible to be beautiful because of your differences, not in spite of them.

Like a lot of people I know, I have a bad habit of scrolling through Instagram and comparing myself to other women, including my own best friends on my feed and wondering why I can’t look like them. It would be nice to be “different” or “weird” in a way that attracts positive attention instead of the negative kind. It would be nice to not constantly feel like I’m participating in a competition where the playing field is not level. That will probably never be my life and while I don’t like to admit it because I fancy myself Wonder Woman, sometimes I wish I were someone else. There are days when I want to give up but then I remind myself I’m a fighter and strong as hell, and I keep trying new things and putting myself out into a world that tells me I don’t belong.

Statistics indicate that learning and attention disabilities affect one in five children. Research shows that learning disabilities can develop due to genetics and/or neurobiological factors. Learning disabilities can range from reading and writing difficulties to attention and hyperactivity issues. In conjunction with these difficulties, mental health issues can also result. Mental health issues can include anger, irritability and worthlessness. Since learning disabilities and mental health issues are invisible, it is hard to know if one has one of these conditions. I have a learning disability. As a result of a neurological condition, I have attention, reading comprehension and executive functioning deficits. My learning challenges have also affected my mental health.

My fifth grade teachers noticed that I was having difficulties with attention and reading comprehension. They referred me to a neuropsychologist for an evaluation. The evaluation indicated that my neurological condition was causing learning challenges; specifically, deficits in attention, reading comprehension and executive functioning.

In order to compensate for my deficits, I participated in cognitive remediation with a neuropsychologist, three times a week. She helped me develop strategies such as taking notes and underlining to increase reading comprehension, creating outlines to help organize my thoughts when writing essays and making schedules to break down school tasks into more manageable pieces.

The downside of using the compensations I was taught, was that I had to work twice as hard as the average student who did not have learning challenges. As a result, this limited my social life, including after school activities and playdates. Not being able to participate in normal social activities like any other kid caused me to have issues with depression and anxiety. While I did not take medication at that time to help, my neuropsychologist did provide counseling. Just as with academic strategies, she helped me with psychological strategies. Psychological strategies included figuring out ways to make friends with my classmates, to not be bullied as well as other strategies including with my family life.

Learning disabilities can result in mental health challenges. As such, a neuropsychological evaluation includes a section that is on emotional health. Oftentimes, working with a neuropsychologist for cognitive remediation and a psychotherapist is recommended. Even if a child is not exhibiting mental health issues at the present time, mental health issues are possible to develop. Everyone who has been recently diagnosed with a learning disability should be aware of the signs of mental health challenges and consult the appropriate health professional if symptoms begin to occur.

Resources

• Supporting the Emotional Needs of Kids With Learning Disabilities: Three signs your child might be struggling with low self-esteem, anxiety, or depression, and how to help.
• Mental Health and Learning Disabilities: Why a Higher Risk?: Failure to identify a learning disability at an early age, and delaying individualized instruction results in school failure that leads to disassociation from school settings and can lead to a higher risk of drop outs and risky behaviors.
• 10 Key Procedural Safeguards in Individuals with Disabilities Education Act (IDEA): The IDEA Act offers legal rights and protections during the process of special education service evaluation. Here are 10 important procedural safeguards and what they mean for you and your child.
• Parent Training Centers: A Free Resource: Every State has at least one Parent Training and Information Center (PTI) that provide free information to families of kids from birth to age 26 who have a disability.
• Parent-Teacher Conference Worksheet: A focused worksheet created by Understood.org for parents to use before and during a meeting with teachers to go over how your child is doing in the classroom, where their strengths and weaknesses are.
• The Difference Between IEP Meetings and Parent-Teacher Conferences: Knowing the difference between an IEP meeting and a parent-teacher conference can help you make the most of both meetings.

Interviewed by our Different & Able President and Founder, Alexandra Nicklas, the duo Mara Koffmann and Jen Mendelsohn, co-founders of Braintrust Tutors, share the way that they first met, which led to the inspiration behind Braintrust Tutors. Mara and Jen discuss the mission of Braintrust Tutors: the importance of the home-school connection, the idea of bringing the whole child to fruition through unique and personalized learning strategies, and how assessment needs can be met with creative learning tools and emotional/mental support for each child. In the interview, Mara and Jen also discuss ways Braintrust Tutors help with the struggles that children with differences often face in the learning environment. As their website states, “Braintrust was created to give everyone connected with the tutoring experience a better way. A better way to connect. A better way to teach. A better way to learn.”

Mara Koffmann, Co-Founder and CEO of Braintrust Tutors

Mara is a problem solver. She’s spent her entire professional career helping students and families understand and overcome their most difficult learning obstacles. No matter how seemingly intractable the problem, Mara relishes rolling up her sleeves and finding effective – and fun! – solutions that will help students achieve their full potential. Mara lives in Brooklyn with her husband and two young boys. Because children require playthings, she has temporarily surrendered her love of order and interior design.

Jen Mendelsohn, Co-Founder and CBO of Braintrust Tutors

Often described as pathologically gregarious, Jen loves nothing more than quarterbacking a business opportunity. Through life’s challenges, she became that expert mom – the one who everyone turns to for a great recommendation – but she hopes that Braintrust will amplify access to everyone and become an even greater connector. Jen is a proud Soho resident and on most days tolerates her husband and three children. They remind her (somewhat ironically) that she is an impatient teacher.

Mike Berkson is a founding member of HandicapThis!, an inspirational leader of the Keep On Keeping On Foundation, motivational speaker, aspiring film-maker, and an entrant novelist. He is also a movie connoisseur and has seen over 12,000 movies. Mike was diagnosed with cerebral palsy and his family was told “not to expect much.” Nonetheless at age three, not only was Mike talking up a storm, but he had a thirst for vocabulary. Mike virtually has no movement of his arms and legs, which limits his control and independence, but Mike’s unmatched wit, amazing stage presence, and good nature is limitless.

At age twelve, Mike met Tim Wambach. Tim was hired to be Mike’s one-on-one aide and help Mike with the tasks of daily living. Throughout the years Mike and Tim have formed an unmeasurable bond and have been through some of the most amazing adventures together.

Mike and Tim created the Keep On Keeping On Foundation to help those living with severe physical disabilities, like cerebral palsy. They have helped families pay for therapy, equipment, home modifications, and motorized wheelchairs, all in an effort to help both the child and the family. Mike and Tim’s motivational speaking success ultimately gave the pair the opportunity to spread their message of tolerance and inclusion through their live show called, Handicap This! Mike also created Making Minds Handicap Accessible: The Digital Classroom Experience, a digital classroom learning tool, which helps spread the message of the importance of social emotional learning and empathy.

Interviewed by our Different & Able President and Founder, Alexandra Nicklas, Mike talks about his unique journey with cerebral palsy, his friend Tim, and his role in HandicapThis!, a two-man show. Mike also touches on mental health and the struggle of accepting one’s self when one has a difference. Throughout the interview, Mike discusses the importance of accessibility, inclusion, and tolerance. Mike’s advice is to, “Throw out the book about how to handle someone with special needs and look at the individual person, not just the disability.”

Portions of Mike’s biography were provided by: Our Team | Handicap This!

Ben Glenn is an author of seven books, an artist, an ADHD specialist, and a Lego fanatic. He is also known as The Chalkguy and president of Chalkguy Media International. Ben was diagnosed with dyslexia and other learning disabilities while in grade school. As an adult he also learned that he had Attention Deficit Hyperactivity Disorder (ADHD) and suddenly everything about his life made perfect sense. Dropping out of college to pursue a love of art and speaking, Ben has been on the road, full-time since 1995. He has traveled to every part of the United States as well as to more remote places like China and Australia, to educate himself and others about ADHD.

Years of living with and studying ADHD has brought Ben to the firm conclusion that ADHD impairs a person’s life the most when that person is trapped in an ADHD-unfriendly environment or does not possess the information they need in order to deal with their symptoms in the right way. Ben’s special mission is to share the realities of ADHD through his speaking, writing, and art with as many people as possible. His live art demonstrations, as The Chalkguy, are dynamic and not-to-be-missed. They astonish audiences, sweeping them up in an exciting and memorable experience.

Interviewed by our Different & Able President and Founder, Alexandra Nicklas, Ben talks about his family, his heartfelt experiences living with ADHD, how he overcame adversity, and his passion for art. Ben, who is quite humorous, also discusses The Chalkguy Experience! and how he is dedicated to share his positive message of hope with groups all over the world. Ben continues to inspire and educate through art and storytelling. He has proved that ADHD has been his perfect companion throughout his life, as a performer, creator, and educator.

Born with no arms as a result of the drug Thalidomide, Alvin was adopted by a family who taught him that he could be whatever he wanted to be, and that anything was possible with hard work and a proper attitude. Using his feet for hands, Alvin found a sense of freedom. Alvin learned to perform routine activities including eating, dressing, playing sports, and becoming a musician. He also learned to play the drums, piano, and trombone. Alvin is a trained broadcaster, fundraiser, motivational speaker, award-winning musician, and bestselling author of the book, Alvin’s Laws of Life: 5 Steps to Successfully Overcome Anything.

Alvin has shared his story and his mission to spark a worldwide “Attitude Revolution” since 1981. Alvin uses his story to challenge and inspire people to rewrite the negative stories they tell themselves about themselves. Over 7,500 corporations, organizations and groups on five continents have used Alvin to ignite, engage, and transform their groups. He has earned the designation of Certified Speaking Professional (CSP), an honour possessed by less than ten percent of professional speakers worldwide. In 2009, Alvin was inducted into the Canadian Association of Speakers (CAPS) Hall of Fame.

Prior to his career as a professional speaker, Alvin worked for non-profit groups, in advertising and public relations, the civil service, and has even run for public office. He has appeared on countless telethons and media features, and has been the subject of two award-winning television documentaries. In addition, Alvin has played a direct role in raising over $175,000,000 for charity.

Interviewed by our Different & Able President and Founder, Alexandra Nicklas, Alvin talks about his failures and triumphs throughout his life. He also discusses in detail his 5 Steps to Successfully Overcome Anything; which Alvin believes are the secrets to meeting and conquering life’s many challenges. Alvin proves that life may not be easy, but with the proper “road map” everyone with or without a difference can be victorious. “We all have obstacles in life. It is ultimately our attitude that determines whether they block our path to success, or strengthen us on our journey,” Alvin states.

Michelle Garnett, Ph.D. is a clinical psychologist and founder of Minds & Hearts, a clinic specializing in Autism Spectrum Disorders (ASD) in Brisbane, Australia. Michelle has over 25 years of experience in all areas of ASD. She was awarded a PhD for her original research on ASD and psychological health in 2007. She co-wrote the first screening tool for Asperger’s syndrome in 1993, and for girls and women in 2011. Michelle has co-authored four books on ASD and has published peer reviewed journal articles. Her most recent book with Barb Cook is a seminal work on the female presentation, Spectrum Women: Walking to the Beat of Autism. She has co-authored three books with Professor Tony Attwood on emotion management for children and adolescents. Michelle also provides ASD training for several Australian universities and has been involved with coverage of autism issues by the likes of The Sydney Morning Herald, the American Broadcasting Company (ABC), The Courier Mail, and various other media outlets.

Interviewed by our Executive Director, Kristina Spiropoulos, Dr. Michelle Garnett shares the Minds & Hearts vision and goals, as a private clinic for Autism Spectrum Conditions (ASC). She also speaks about the importance and value of education, research, and high-quality psychological services such as, screenings and diagnostic assessments. Michelle explains how these services can lead to breakthroughs in research and provide an understanding about ASC locally and globally. During the interview, Michelle also discusses pragmatics and why they are essential to social communication. Through Michelle and the Minds & Hearts team, one can be more enlightened and grasp the true nature of ASC by “working with the mind, through the heart.”

David Flink is a social movement leader, international speaker, and author of the book, Thinking Differently: An Inspiring Guide for Parents of Children with Learning Disabilities. He graduated from Brown University earning two B.A. degrees, with honors, in education and psychology; he continued on to Columbia University to earn his M.A degree in dis/ability studies. While a student at Brown University in 1998, alongside a group of dedicated volunteers, David created Eye to Eye, a “national mentoring movement that empowers young people with learning disabilities (LD) by giving them a mentor who shares that experience.” David is the Founder and Chief Empowerment Officer of Eye to Eye, which has over 50 chapters in over 20 states nationwide and recently developed a virtual platform, Eye to Eye: Learning Differently 101, to continue to reach students and educators wherever they are.

David was diagnosed at a young age with attention deficit hyperactivity disorder, commonly referred to by its acronym ADHD, and dyslexia. As a child, his parents and teachers applauded David’s educational strides and knew he had the brainpower to achieve his dreams. However, David felt that he would have found the message of achievement to be more valuable and effective; especially if he had heard from another person who also had a learning disability. Using an empathetic approach, Eye to Eye today is accomplishing what David wanted as a child, a mentoring movement by people with learning disabilities and attention disorder for students with learning disabilities and attention disorder. This confidant method allows children to flourish with confidence and learning independence.

David regularly speaks to audiences ranging from students and educators to social entrepreneurs, policymakers, and corporate leaders. David has been the keynote speaker at the International Dyslexia Association’s Annual Conference, the Education Revolution Conference held in San Francisco’s AT&T Park, and the Arts and Special Education Conference at The John F. Kennedy Center for the Performing Arts in Washington, DC. Also, David was elected to the prestigious Ashoka Fellowship in 2011 and he was named one of the New Leaders Council “40 Under 40.”

Interviewed by our Different & Able President and Founder, Alexandra Nicklas, David discusses his mentorship program and his personal struggles with ADHD and dyslexia. He is hopeful that by talking about one’s difference, society’s stigma of people with differences will be eliminated. David believes that a person can overcome challenges by educating others and following their passion. David has been quoted saying, “Tell your story. From your story comes our community, and comes greatness ahead.”