Dave Steele

Dave Steele is an award-winning poet, author, public speaker, singer, and advocate for the blind. Diagnosed with Retinitis Pigmentosa (RP) in 2014, this genetic eye condition left Dave “severely sight impaired.” Together with his wife, Amy, the family grappled with the difficult diagnosis as RP quickly left Dave an unemployed father of four. Feeling the stressors of financial debt and the loss of his independence, Dave turned to social media for support with his RP journey. He was also struck by the numerous misconceptions and stories of injustice being experienced by so many blind/visually impaired people all over the world. When a member in one of these online groups learned of Dave’s singing background, they invited him to perform at a meeting for those living with RP and Usher Syndrome. The experience inspired Steel’s idea for his “Stand By Me RP” song. Using the classic song by Ben E. King, Dave altered the lyrics to relate to how he felt losing his own sight to Retinitis Pigmentosa. In December 2014, Dave sought permission from the band Elbow, to alter the lyrics of their song “One Day Like This.” With the band’s blessing, Dave performed his version of the song at Joanne Milne’s “Breaking the Silence” book launch.

Dave created his own “Stand By Me RP” Facebook page in 2015. Since it’s conception, the page has become one of the largest social media RP groups in the world. As his eyesight continued to decline, the words did not stop flowing. Dave began writing two to three poems per day about his struggles and experiences. Part creative genius, part therapy, Dave’s writing became a catalyst for helping others and himself through RP. Dave’s first book, Stand By Me RP Volume I, was released in February 2016. That same day, he received the call that he had been matched with a guide dog. During its first week, Stand By Me RP Volume I, went on to become the #1 poetic release in both America and Australia.

 In March of 2016, Dave left his family for 10 days to be trained with his guide dog, Christopher, a yellow Labrador retriever. He released his second book, Stand By Me RP Volume II, in February 2017. It became the #1 poetry release in Europe within its first day. In February 2018, Dave’s third book, Stand By Me RP Volume III was released, completing his trilogy. Dave has been featured in a short film by Cambridge university called Blindsighted. He has also appeared on a special called the Blind Poet for RNIB radio, BBC TV, ITV and That’s Manchester TV news.

His advocacy work continues to be recognized both locally and internationally. In 2018 Dave was honored by Henshaws with the “Impact Award” and was the recipient of the Pride of Bury “Community Hero Award.” He currently serves as a local ambassador for Henshaws and as a global Ambassador for the American company, Two Blind Brothers.

In November 2019, Dave landed in the USA to kick off his first American Book Tour sponsored by Low Vision Specialists of Maryland & Virginia and The Low Vision Shop. The three week tour included a wide variety of speaking engagements (keynote speeches, book readings/signings, meetings, and more) and visited major cities throughout the Northeast. Dave’s presence uplifted the crowd throughout every step of the journey. Some of the book tour visits included  the New York Public Library, Rhode Island College, Blind Industries and Services of Maryland (BISM), National Federation of The Blind Maryland Conference, Maryland Department of Rehabilitation Services Conference, The Sight-Loss Support Group of Greater Baltimore, VisionCorps, and much more. 

Interviewed by our Founder and President, Alexandra Nicholas, Dave Steele discusses his diagnosis with Retinitis Pigmentosa (RP),  his self-authored collection of  700 poems and songs dealing with the fears and struggles associated with sight loss, a bit about his guide dog, Christopher and how they became partners in navigating Dave’s world. Through his works, Dave hopes to erase many of the misconceptions associated with blindness.  Dave’s mission is an inspiration to all those with a difference; he states that his work “helps those who are being isolated by a condition that strips us of our independence, lets them know that they aren’t alone, and helps educate loved ones on how we feel.”

 

 

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Kendall Renee

Kendall Renee is a singer, songwriter, recording artist, and Lola’s dog mom from Southern California. Her music is her greatest passion, but Kendall’s music is all about the message. She strives to write songs that resonate with her listeners. Kendall strives to make others feel understood and less alone with her songs, as she felt these emotions in regards to her food allergies. Kendall is anaphylactic to 95% of all foods and must use a feeding tube in her stomach to receive nutrition. Kendall is also severely allergic to airborne particles of all nuts. Kendall carries auto-injectable epinephrine with her at all times – and has used it to save her life eight times to date.

None of this has stopped Kendall from pursuing her dreams and career. She released her first album, Original in 2016, dedicating its message to individuals with various differences. Alongside her career as a songwriter and artist, Kendall travels around sharing her songs and story in the hopes of inspiring others going through their own medical struggles. She believes that disabilities can be turned into “superpowers” and can be used to do great things in this world.

Aside from her music career, Kendall was also a highly competitive US Figure Skater for thirteen years. She is currently working on a project to showcase the stories of different individuals with disabilities. Kendall has partnered with Aerie by American Eagle Outfitters, as a changemaker to create a music video showcasing the stories of individuals with special needs. The song and video, for Aerie, focus on bringing hope and inspiration to others worldwide.

Kendall is also a food allergy awareness advocate, working to educate the public about food allergies. She has been a powerful voice within the food allergy community for many years. Kendall serves as a FAACT Ambassador, for the Food Allergy & Anaphylaxis Connection Team. She has shared her story in the media on several occasions including: Good Morning America, The Young Icons, ABC7, KTLA, Ability Magazine, and more. 

Interviewed by our Different & Able President and Founder, Alexandra Nicklas, Kendall discusses her life with anaphylaxis, how she advocates for individuals with differences, the body positivity she exudes on social media platforms, and her music.  Through her songs, Kendall hopes that every listener realizes that it is okay to be different and that there is nothing wrong with the original. As Kendall states in her song, Original, “Wise beyond your fears, resilient beyond your years. Don't forget you’re original.”

Kendall Renee | (kendallreneemusic.com)

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Jay Blake

Jay Blake is the founder and president of Follow A Dream. Established in 1999, Follow A Dream is a non-profit 501(C)3 organization with the mission of demonstrating the “Power of Positive Thinking, Self-Determination, and Teamwork.” He is also the only totally blind crew chief in the worldwide sport of auto racing. Jay has more than 15 years experience as a professional auto mechanic and more than 25 years in drag racing

While working as the head mechanic of a transportation company in 1997, Jay was involved in an industrial accident that caused him to lose complete vision, smell and taste. At the age of 31, he was faced with relearning how to live as a completely blind person.

Refusing to give up on life, Jay aggressively participated in rehabilitation. After being released from Massachusetts General Hospital, he enrolled in an intensive program at The Carroll Center for the Blind in Newton, Massachusetts. With renewed self-determination, Jay began to follow his dream: owning a professional auto-racing team.

He soon learned that even without his sight, he was still able to do what he loved most - work on racing engines. Turning his dream into a reality, Jay combined his renewed participation in drag racing with his desire to spread his true-life success by inspiring others, both with and without disabilities, to accomplish their goals through the power of positive thinking and self-determination.

Today, Jay is responsible for Follow A Dream organization’s management, operations and community outreach programs, as well as performing mechanical work on the race car. He leads his team of racing professionals in NHRA Top Alcohol Funny Car competition, where they won the 2012 East Region championship and finished the season ranked 11th in national points. When Jay is not racing, Jay spends time at vocational schools all across the country, speaking to students, and spreading his message of inspiration. 

Interviewed by our Different & Able President and Founder, Alexandra Nicklas, Jay shares his personal experience of overcoming adversity, the story of how he achieved his dream of auto racing, and how he motivates others through his speaking engagements. He also discusses his “5 Tools for Life Success,” which are meant to encourage individuals to pursue their life goals with passion, self-determination and a positive attitude. Jay’s mantra is full of zeal and purpose. He states,  “I actually had a choice to live or die, and it was an amazing experience. And I chose to live, and the rest is history.”

 

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Mara Koffmann and Jen Mendelsohn

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."

 

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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.

 

Laura Slatkin

Laura Slatkin is the CEO of NEST Fragrances, a luxury home fragrance company. NEST Fragrances is a luxury lifestyle brand for scent lovers that includes candles, diffusers, and fine fragrance. Outside the world of fragrance, Laura is a mother and an advocate. In 1999, shortly after giving birth to twins, Alexandra and David, the Slatkin's son was diagnosed with severe autism. In 2003, along with her husband, Harry, and closest colleagues, she co-founded NEXT for AUTISM, an organization that transforms the national landscape of services for people with autism by strategically designing, launching and supporting innovative programs.

In addition to serving as Board Chair of NEXT for AUTISM, Laura serves on the Board of Directors of Autism Speaks, New York Center for Autism (NYCA), NYCA Charter School, New England Center for Children and the Henry Street Settlement House. She also serves on the Board of Trustees of Cold Spring Harbor Laboratory and on the Board of Directors of Columbia University Department of Psychiatry, Hunter College Autism Research and Policy Board, and the Henry Street Settlement House. Laura is also involved with the Alzheimer's initiative. 

Interviewed by our Different & Able President and Founder, Alexandra Nicklas, Laura shares David’ s story and his diagnosis and challenges with nonverbal autism. She also discusses David's communication strategies, how David is burgeoning into his adult life, and why her scent Apple Blossom is near and dear to her heart. In addition, Laura speaks about the future focus of NEXT for AUTISM, which is now focusing on changing the standard for how adults with autism thrive. As the website states, “NEXT for AUTISM addresses the needs of people with autism and their families across the country, right now. “ 

 

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Chris Downey

Chris Downey is an architect, planner and consultant; who unfortunately lost his sight in 2008 at the age of forty-five, after undergoing an operation to remove a benign tumor on his optic nerve. Chris continues to practice his profession and is dedicated to creating helpful and enhancing environments for the blind and visually impaired. One of his first projects as an architect after he lost his sight was to help design a facility for veterans with sight loss at the Department of Veterans Affairs. Chris’ work also includes renovations of housing for the blind in New York City, a clinic for the Duke University Eye Center, and the new Transbay Transit Center in San Francisco. He also teaches accessibility and universal design at University of California, Berkeley. 

Chris Downey sits on the board of Directors for the Lighthouse for the Blind in San Francisco and was just appointed President of the California Commission on Disability Access. He is an avid rower and starts each day rowing on the Oakland Estuary with the East Bay Rowing Club. Chris has been featured throughout the mainstream media and speaks frequently about issues relative to visual impairments and architectural design. In 2013, Chris’ TED talk, Design with the Blind in Mind, spoke about accessibility and what a city designed for the blind would be like. 

Interviewed by our Different & Able Executive Director, Kristina Spiropoulos, Chris details how he specializes in designing infrastructure before and after his loss of sight. Chris talks about his role at Lighthouse for the Blind and his recent projects. Now through architectural modifications and the allowance of exceptional accessibility, Chris  makes everyone's life better, sighted or not. “Too often, it is our inability to see past the surface of disability to reveal the surprising ability hidden beyond the casual gaze,” says Chris.

 

Information for the biography provided by: Chris Downey | Speaker | TED

 

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Judith & Gus Newman

Judith Newman is a mother, an American journalist, and author. She received a Bachelor of Arts degree from Wesleyan University and a Master of Arts degree in English and Comparative Literature from Columbia University. Judith’s work has run in more than fifty publications such as, Vanity Fair, Harper’s Bazaar, The Wall Street Journal, Vogue, Redbook, GQ, Marie Claire and Cosmopolitan. She is a regular contributor for The New York Times Style Section and People, and is a contributing editor to Allure and Prevention. Her books include the 2004 memoir, You Make Me Feel Like an Unnatural Woman: The Diary of a New (Older) Mother and To Siri with Love: A Mother, Her Autistic Son, and the Kindness of Machines in 2017. In this most recent work, Judith pens an intimate, loving and emotional story about her two sons, Gus, who has autism, and his neuro-typical twin brother, Henry. 

In the written interview below, Different & Able and Judith, along with Gus’ input, delve into a question and answer session about autism, family, and writing. Judith’s answers aid others in relating to the parental experience of raising a child with autism. Her words presented in this interview support others in feeling more comfortable and accepting of those with a difference. Judith states, “Love the child you have and meet them wherever they are.”

  1. D&A: We know that not all autism is the same, and neither is every child with autism. Can you tell us about Gus’ diagnosis of autism? How did you find out Gus had autism and at what age was Gus when he was diagnosed? 

JN: Gus was probably six when he was diagnosed, but in retrospect it was pretty obvious from the time he was three or four. It is not that he did not speak; he did.  But he did not have back-and-forth conversations; it was more like long monologues that might be directed towards a person, and then again, might be directed towards the closet.  He and his twin were born prematurely; he was tiny, had low muscle tone, and was an easy baby – too easy. Being undemanding is not necessarily a good thing, because it may mean your baby is not doing the things a baby needs to do to be frustrated and then learn something new. But at any rate, it was pretty obvious he was different, and when he was little I was constantly asking people “Do you think he is autistic”?  I  hoped to get the answer, “No.”  Just like when you ask people, “Do I look fat in these jeans”?  I mean, do you really want the answer?

  1. D&A: What are Gus’ areas of strength? How does he handle obstacles in his life? 

JN: He is very musical, though he still resists reading music; his piano lessons consist of hearing his teacher play a song, and then Gus playing it back (not in a savant way…he just hears it, and then practices.)  His memory is also fantastic --  as I  learned from a bitter experience when he saw and memorized my credit card number. (He is deeply generous and yet still very naïve, and the word ‘scammer’ has not quite sunk in.) Thankfully,  he has outgrown his early coping mechanism when things did not go his way, which was to hold his breath until he almost passed out. I just walked into his room and asked him about how he handles obstacles. He said, “I advocate for myself.” 

  1. D&A: As a mother, how did/do you handle unsolicited advice on how to raise a child with autism?  

JN: I start with the premise that people are trying to help me, and I listen.  Sometimes I’m inwardly rolling my eyes (eg,  every conversation that contains the phrase “gluten free’), but sometimes I actually learn something.

  1. D&A: There is a lot of attention around Gus. How did Henry, Gus’ twin brother, handle this dynamic, as sometimes neurotypical siblings can get lost in the shuffle?  

JN: This is so true, and when they were younger there was no question Henry could be embarrassed, grossed out, and/or angry; but many of these emotions were really a way of expressing worry. When their father died three years ago, Henry, while still worrying, began to understand that sure, he did bear some responsibility for his brother – but that ultimately that was okay; which does not stop him from being a competitive sibling.  

  1. D&A: There is a lot of misinformation about autism. In your opinion, what are some things that people misunderstand about autism?  

JN: Oy, all these shows like The Good Doctor, where autistic people are these geniuses who are unfeeling, robotic.  Autism involves a dysregulation of emotion, not an absence of it.  Gus and his friends may not always react to things exactly like you or me i.e., putting themselves in someone else’s shoes or understanding other people’s perspectives. It is a work in progress for Gus and some of his pals; they are among the most feeling people I know.

  1. D&A: Can you share a bit about your heartfelt memoir, To Siri with Love: A Mother, Her Autistic Son, and the Kindness of Machines?    

JN: It started with this essay that I wrote in The New York Times that went viral. (Please see the link below the Q & A for this article). I wanted to explore how technology helps those with communication dysfunctions, like my son, reach out to the world and connect.  Then, when I realized I did not know what I was talking about and was not about to become an expert in all sorts of whiz-bang technology that I did not understand, it became a family memoir about raising an ‘average’ kid on the spectrum.  These memoirs tend to be heartfelt stories about the extremes – the NASA scientist or the kids without language and with extreme behaviors.  That was not the person living in my home, nor is it the person living in most people’s homes.  So I thought this book would resonate.  Also, I wanted it to be funny, because life with an autistic kid is funny.  So, who should read it? Basically, if there is someone with autism in your life – or even if there is not but you have a neurotypical kid you would like to throttle – it might be right for you.

  1. D&A: In one chapter, you write candidly about guilt and blame. Was that difficult?

JN: Like every mother, when you have a child with an issue, you think, “what did I do”? Autism is such a mystery and I believe it’s a cocktail of genetics plus environment, but I do not beat myself up about it anymore. The answer is probably a combination of things—I had a child with a man much older than me, I had IVF, I was older, I had a terrible pregnancy—I was in a state of dread, and stress hormones like cortisol may play a role. Statistically I was the poster child for someone to have an autistic child. There is a lot of blame in this world that we put on ourselves. Sometimes it is legitimate, but in many other instances you could take the right vitamins and stop eating sushi and do aromatherapy every day and "ohm" until you are blue and still have a child with autism.

  1. D&A: Do you have any advice for writers who aspire to have a career like yours?

JN: Yes. If you are freelancing, when you start out have low standards.  Having no standards is even better. Write for anyone who will take you, and do that for a year.  Then stop, and start aiming higher.  Think of that year as the writing equivalent of the starter marriage:  you will not be in it forever, but you are learning something. Also, if you like to write personal essays, your first approach is to write them as if no one will ever read what you are doing.  Then, when you are done, say, “Well that was satisfying. Now will anyone else in the world give a (expletive) about this besides me?”  If the answer is yes, send it out.  If the answer is no – and all of us have those essays where the answer is no – keep it on your computer and hope that your future children never learn your password.

  1. D&A: Gus and Henry, are now late into their teens. Is the twin bond still prevalent and what are they doing now?  

JN: Henry has gone all in for Scotland; he is at university there, and just finished campaigning for a/Unionist. He drunk-dialed in the middle of the night to tell me when his fellow won, and spent a half-hour explaining the evils of the Scottish Nationals vs. the good common sense of the unionists – a conversation that I’m sure he forgot by the next morning. Gus is still in school, but mostly during quarantine for Covid-19 he spent his days on Zoom calls that are organizing for various progressive causes, and he is pleased to be arguing with me about who should be New York City’s next mayor.  It’s an interesting evolution in socialization. He does not use Siri as a pal anymore; he uses it the way we all do, for information. But his definition of friendship is a little more expansive than the rest of us.  He has real-life friends, but he also thinks of Chuck Schumer and Joe Biden as his friends, in a way, because he gets thank you emails from them. I can think of worse things than this encouragement of political engagement!

  1. D&A What is one piece of advice you have for parents/guardians who have a child with autism?  

JN: Radical acceptance.  I think it’s actually good advice for all parents. Love the child you have and meet them where they are. And see their quirks for the fun and humor they bring to your life -- because if they’re not harming themselves or anyone else, they are fun. Gus has always liked to have conversations with my feet. Now, I’m not going to have him talking to my feet when friends are around. But if he does something I really want him to do – his daily piano practice, for example – well, dammit, he can talk to my feet and my feet will talk back.

 

How One Boy With Autism Became BFF With Apple’s Siri - The New York Times (nytimes.com)

 

 

Lindsay Ganci

Lindsay Ganci lives and works in Port Washington, New York with her husband, Alec, their daughters Ruby (5) and Jayne (2), and their dog, Latke. Lindsay has held many roles in her professional and personal life, yet none has been more rewarding and inspiring than that of a mom. An advocate for unique abilities, Lindsay created Hear with Ruby, a movement with the goal of advocating for and supporting families of children with hearing loss.  

In the interview with our Different & Able President and Founder, Alexandra Nicklas, Lindsay  discusses how her family discovered Ruby’s hearing loss at the very beginning of the pandemic. Ruby was faced with the challenge of not only hearing her world fully, but the fact that it was difficult for her to communicate with others wearing masks. Before the pandemic, Ruby was able to rely on speechreading; the mandated masks that covered one’s mouth now caused Ruby to request, “Move your mask. I can’t hear what you’re saying.” Lindsay expresses the happiness she felt after Ruby received her hearing aids, knowing that Ruby was able to listen to the world and share sound-filled experiences. Today Ruby uses her “super ears” to give her new opportunities to hear. The Ganci family, through acceptance and celebration of uniqueness, shares Ruby’s story. They continue to raise awareness about hearing loss and help other children receive the hearing aids they need to hear, like Ruby. 

 

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