The incredible individual that you will be learning about today is someone who has been inspiring and motivating me ever since I first heard about him when I was 13 years old. Although I have not seen it yet, with the biographical film documenting his life, “The Theory of Everything,” recently hitting theaters, it seems like a fitting time to introduce you to this amazing man. While I am not conceited nor naive enough to think that I am in the same league as him, you will quickly see that today’s inductee and I have a lot in common. We both were born with genetic, neuromuscular diseases. We are both huge nerds and have a fascination and love for mathematics. Most notably though, we both refuse to let our physical limitations stop us from leading fulfilling, meaningful lives and sharing our mental gifts with the world. Today’s topic for discussion, and newest entry into the club of Honorary Roll Models, is Dr. Stephen Hawking.
Stephen Hawking was born a bouncing, healthy baby boy in 1942 in Oxford, England, to two loving parents. His parents were both very well educated graduates of the University of Oxford, and their love for knowledge and learning definitely rubbed off on Stephen and his younger siblings. While he always showed a keen mind and an interest in learning, he was not considered a prodigy or especially gifted academically as a young boy. As a teenager however, he began to show a considerable affinity for scientific subjects, especially mathematics, physics, and chemistry, and thanks to the encouragement and guidance of one of his teachers, he was able to develop his enormous gift for understanding science. He ended up attending the University of Oxford as an undergraduate at the young age of 17, and although he wanted to study mathematics, to make himself more marketable (there are no jobs for math majors, which I learned the hard way) he decided to study physics and chemistry instead.
He found his time at Oxford boring and uninteresting initially, as he was not challenged by any of his course work. After he matured and got more acclimated to college life, he underwent a personal transformation and became much more personable with his peers. Stephen actually grew into a quite popular student around campus, and he even joined the Oxford Boat Club, where he coxed a rowing team. Although he once estimated that he only studied 1,000 hours during his three years at Oxford (that is not even an hour a day), he still graduated with a first-class honors degree and was accepted to study cosmology at the University of Cambridge in 1962. During his time at Cambridge he became very interested in the heated debate at the time about the creation of the universe and the work of Roger Penrose on black holes and singularity (nerd-speak, feel free to move on). By melding together parts of both of these topics he was able to write his thesis and highly regarded essay, “Singularities and the Geometry of Space-Time,” and graduate with his PhD in 1966.
His time at Cambridge is also when he first started having issues with his health. He noticed that he had grown increasingly clumsy during his final year at Oxford, and he even had an incident where he fell down a flight of stairs. His ability to pursue his activities on the rowing team also had gotten considerably more difficult. When he went home during the Holidays of his first year at Cambridge, his family noticed that his speech had gotten slurred and hard to understand. With something obviously wrong, he began seeing various doctors looking for answers. Eventually in 1963, at the age of only 21 years old, he was diagnosed with amyotrophic lateral sclerosis (ALS), commonly called Lou Gehrig’s disease or motor neuron disease. Despite the fact that specialists only gave him a life expectancy of 2 years, he could no longer walk without help (if at all), and his speech had become nearly unintelligible, he refused to give up or give in to this despicable disease that had turned his life upside down (starting to sound like someone you know?). He returned to Cambridge and threw himself into his studies with a renewed zeal that has never diminished, and this newfound devotion to his passion for science is what has fueled him ever since.
For the last 50 years Hawking has been considered one of the the top minds in the field of cosmology and the study of the universe. He has written countless essays and proofs that are held in the same esteem as Einstein’s theories on relativity as the most important scientific papers of the 20th century. His argument for what is now called Hawking-Radiation in 1974 about the nature of black holes was one of his first groundbreaking works. He also is highly regarded for his work with Penrose on the aptly named Hawking-Penrose Theorems that deal with singularities within black holes. In addition to his academic publications that maybe a dozen people in the entire world can understand, he has also strived to pass some of his love and knowledge of the universe to the general public by writing other, more accessible works. His book, “A Brief History of Time,” which was first published in 1988, is still considered one of the best books on the market for learning about the universe, and it spent hundreds of days on the best sellers list. All of the contributions he has made to science have not gone unnoticed, and he has been awarded numerous honors and awards including the Presidential Medal of Freedom, the Maxwell Award, and induction into the Order of the British Empire.
You would think that being the smartest person on the planet and painstakingly trying to share your genius with the world, especially when you cannot even speak other than through the use of an electronic device, would be enough for a person. For Dr. Hawking though, it is not enough to merely work to explain the entire universe to the rest of us. He also devotes a great deal of time and energy to trying to advance the rights and place of disabled people around the world. In 2000, he signed the “Charter for the Third Millennium on Disability,” which asked governments to work to prevent disabilities and protect the rights of the currently disabled. Several years ago he even took a ride in the “Vomit Comet” to show how weightlessness could potentially benefit individuals with physical limitations. Just last year Stephen accepted the now infamous “Ice Bucket Challenge” to raise awareness and money for ALS research. These are just a few of the numerous ways that this brilliant, courageous man has worked to better the lives of disabled people worldwide, and I cannot wait to see what he has in store for us next.
The following quote by Hawking from the biographical documentary film, “Hawking,” does a wonderful job of showing how disabled individuals fit into our able-bodied world.
“We are all different – but we share the same human spirit. Perhaps it’s human nature that we adapt – and survive.” – Stephen Hawking
Despite the fact that he has spent nearly all of his adult life trapped within a failing body and can barely communicate with those around him, Stephen has achieved more and done more for others than most people do in a lifetime. He has unravelled some of the secrets of the universe, helped progress the rights of the physically disabled, and been a source of inspiration for millions throughout his life. While I like to think of myself as a “poor man’s version” of Dr. Hawking, since we do have a lot in common, I know that I can never reach his level of genius or accomplish as much as he has. By learning from him however, I do hope that I can use the motivation he instills in me to help others in my own small way, and I hope you will do the same. If we all had the drive and determination of a Stephen Hawking, just imagine how much we could achieve and how much better the world would be. Although it is nothing compared to having cameos on shows like “The Simpson’s” or “The Big Bang Theory,” I am proud to announce Dr. Stephen Hawking as the newest Honorary Roll Model.
It occurred to me the other day as I was getting Roll Models’ first guest blogger article up on the website that it has been a really long time since I had selected an Honorary Roll Model. Since we all can use a healthy dose of inspiration to get through the end of the work week, today I am going to introduce you to an incredible individual who has more resilience and inner strength than I thought possible. I was told about this amazing man by one of my nurses recently, and after spending a couple hours reading about his life and watching clips of him on YouTube.com, I was not just inspired, but blown away. His will to live his life and achieve his goals is something that we can all learn and benefit from. Even more impressively, while he is certainly beautiful on the inside, he is also able to create phenomenal works of art for us to marvel at that are just as beautiful. This man, who like myself refuses to let his physical limitations keep him from chasing his dreams, is the inspirational artist, Chuck Close.
Chuck was born a happy, healthy baby boy on July 5th, 1940. When he was 14 years old, his mother took him to the Seattle Art Museum where he was exposed to the abstract works of Jackson Pollock. While he admits that initially the thought of the random, haphazard style of Pollock being considered art angered him, he also credits this exposure to some degree for driving his passion for becoming an artist. He was considered a great artistic talent even at a fairly young age receiving his MFA from Yale and studying at the Academy of Fine Arts in Vienna on a Fulbright scholarship in 1965. Throughout the first part of his career he worked in various media from oil painting to photography to airbrush and everything in between. He is best known for his work in photo-realism and creating large works that can measure nearly 10 feet by 7 feet that are composed of hundreds of small canvases arranged in a grid, which when viewed from a distance combine to create the desired image. In 1967 Close made a decision that in order to challenge himself as an artist and promote personal growth that he was going to abandon the paintbrush and work with other media in an almost Pollock-esque fashion. When asked about this choice to put down the brush and pursue more non-traditional media he said, “If you impose a limit to not do something you’ve done before, it will push you to where you’ve never gone before.” He had no idea how much this mentality of pushing himself and wanting to experiment with life would be a benefit to him in the years to come.
On December 7th, 1988, Close experienced what he calls “The Event.” After feeling chest pains at an awards ceremony that evening, he decided to go to the emergency room and get checked out just to be safe. While in the ER, he suffered a seizure caused by a rupture in one of his spinal arteries. While he did survive this brush with death, it left him paralyzed from the neck down. While a serious medical condition and paralysis would be the end of the road for most artists, for Close it was merely a momentary setback. Although it took months of painstaking physical therapy and rehabilitation, eventually he was able to regain some use of his upper limbs, but he has relied on a wheelchair ever since “The Event.” Although gaining some arm and hand movement is quite an accomplishment given his condition, it is a far cry from having the accurate and precise hand movement of a world class artist. Once again though, Close was not about to give up on his passion for creating works of art, and enormous ones at that. He merely applied his mindset of experimentation and not being bound by limits to this new obstacle in his life.
In order to continue his career as an artist, Chuck merely took his mentality of using non-traditional media in his works (he even used smudged fingerprints to replicate a black-and-white photo) and took it one step further. In addition to experimenting with unconventional materials in his work, he now also began experimenting with how he applied the medium to the canvas. Luckily, his style of combining hundreds of smaller canvases in a grid to create one larger piece lent itself well to his new lack of dexterity, and he came up with a new method. Just as before “The Event,” Close would divide the piece into a grid of hundreds of little squares. He would then paint each little grid box on its own, small canvas by strapping a brush to his wrist with tape, and with the help of an assistant, combine these canvases back together using a system of pulleys. Creating such a large work in this manner was more about combining colors correctly and perspective than precise hand movements, which has helped him stay on top of the art world to this day. Here he is discussing his physical challenges:
Even though he is inspirational enough just by living his life and telling his story, Close takes his generosity and selflessness even further. He has donated his works to numerous charities to be auctioned off to generate funds. He also is one of only eight artists who volunteered for the Turnaround Arts Initiative, which tries to improve student engagement in low-performing schools through the arts. His generosity and spirit to live have not gone unnoticed either. In 2000, Close was awarded the National Medal of Arts by President Clinton. He also was appointed to the New York Cultural Affairs Advisory Commission by Mayor Bloomberg, where he consulted on cultural arts. He is even serving on President Obama’s Committee on the Arts and Humanities. He was also recently given a key to the city of Bridgeport, Connecticut, by Mayor Bill Finch for housing his art the community college.
Maybe I am biased because Close and I have so much in common, like enjoying art, using a wheelchair, and having a drive to help others, but I think his story is one that all of us can get inspiration from. He is the epitome of what it means to never give up, overcome limits, and find creative solutions to the obstacles you encounter throughout your life. His mindset of always pushing yourself to do things in new ways in order to grow as a person is something I try to emulate in my life, and I hope that you too will find inspiration in Close and his journey. People with the natural talent of Close who also have his level of inner strength and his positive mentality do not come along often, which is why it is important to appreciate and learn from them when they do. That is why I am proud to announce that Chuck Close is now an Honorary Roll Model.
It has been a long time since my last induction into my group of Honorary Roll Models, and given my recent partnership with the Braun Corporation, I think that it is only fitting to announce today’s addition to this prestigious club. The man I am honoring today made a profound impact on the disabled community by giving them the freedom of mobility. He gave people in wheelchairs the ability to go out into the world and chase their dreams for the first time. Not only did he give physically disabled individuals the means to be a part of society, but he also believed that money should not keep a disabled person from the independence of mobility, and created a foundation to assist people with acquiring wheelchair accessible vehicles. Plus, he too is a Northern Indiana boy with spinal muscular atrophy and big dreams. This incredible man, who was diagnosed in 1947 at the age of 6 years old with muscular dystrophy, was Ralph Braun.
Braun, like me, was born with the genetic, neuromuscular disease, spinal muscular atrophy. By the age of 14, he could no longer walk and began using a wheelchair. Even though it was the late 1950s, a time when most of the physically disabled were either shut-ins or in facilities, Ralph was determined to get an education and create a life for himself despite his physical limitations. At the age of 20 he had built himself a 3-wheeled scooter, the Tri-wheeler, that could help him travel slightly longer distances than he could with his wheelchair. His invention allowed him to become a part of society, and he used his Tri-wheeler for several years to get to and from his job at a nearby manufacturing company. A few years later the company relocated further from Braun’s home than his Tri-wheeler would take him though, and for most people this would have ended the story, but Ralph Braun was not most people. He fitted an old, mail carrier jeep with hand controls and a hydraulic tailgate lift that allowed him to travel long distances in his wheelchair without assistance, which gave him access to the whole world.
Braun’s inventions not only gave him the ability to have a happy, fulfilling life, but they also drew the attention of the disabled community in general. Ralph decided that everyone should have the chance to become a part of the world, so in 1963 he started “Save-A-Step” manufacturing where he built his Tri-wheeler for others. Within just a few years, “Save-A-Step” began manufacturing the Lift-A-Way wheelchair lift for full-size vans, and just like that the disabled community had mobility for the first time. In 1972 “Save-A-Step” became the Braun Corporation, and over the next two decades and beyond, this company achieved great success and continued to make efforts to improve the mobility of physically disabled people with advances like the dropped-floor minivan. Even though Braun passed away in 2012 at the age of 72, his company continues to lead the way in making the world accessible to people with physical limitations.
In addition to the enormous impact his company has had on the disabled community, Braun also worked to ensure that financial issues would not prevent disabled individuals from being a part of society. He did this through his Braun Foundation. The mission of this organization is to “assist those with mobility needs through education, information, and product acquisition.” The organization has provided numerous families with vehicles, lifts, and countless other mobility products that otherwise could not afford them. It is no surprise that Ralph’s impact on the disabled community has been recognized by many prestigious awards. He received the “Champion of Change” award from the White House and was inducted into the National Mobility Equipment Dealers Association (NMEDA) in 2012. Even though he is no longer with us, there is no doubt that his legacy will be appreciated by the disabled community forever.
Although I may be slightly biased by the fact that Ralph and I both grew up in Indiana, had the same disease, and worked for the same company, I don’t think anyone would disagree that he greatly improved the lives of all disabled people. His legacy will live on through the great work of both his Braun Corporation and the Braun Foundation for years. I am so honored to be a part of the Braun family that he created to help others. So, it is my privilege to announce that Ralph Braun is now an Honorary Roll Model.
I realized as I was on Facebook the other day reading a post by another disabled blogger, that it has been a while since I have inducted anyone into the group of Honorary Roll Models. I apologize for dropping the ball on this, because it really is unfair for me to keep all of the inspiring, amazing people rolling their way through life all to myself. So to atone for this crime I have committed against you, today I am going to introduce you to one of the funniest, most motivating people I have ever come across. He has been featured in publications like “The Huffington Post,” “The Chicago Tribune,” The Boston Globe,” and “San Francisco Chronicle.” He has become a highly respected and sought after professional speaker giving more than 50 talks last year all over the country. This incredible individual and co-founder of “Handicap This” who is working to “make minds handicap accessible” is Mike Berkson.
Mike, and his able-bodied, twin brother, David, were born in 1989. Due to complications during their birth, Mike was briefly oxygen deprived and ended up being diagnosed with cerebral palsy. This neuromuscular disorder effects the muscles of the entire body, making the body very rigid, stiff, and difficult to control. Much the same way my doctors told my parents all of the things I would never be able to do when I was diagnosed, Mike’s parents were told not to expect too much from him, and that he would most likely never even speak. He has proved them all wrong though by not only being able to talk, but by being one of the two lead actors/speakers in his show, “Handicap This.” The other co-founder of “Handicap This,” and Mike’s friend for over a decade, is Tim Wambach. When Mike was only 12 years old, Tim (who was 27 at the time) was hired to assist him in getting around and going to school and such. The pair bonded over time, and they have been nearly inseparable ever since. Their friendship, and the understanding that they have gained about life from each other, is what drove them to start their work educating people about what it is like to live with a disability.
In the Spring of 2005, Tim wrote the book, “Keep on Keeping on,” (later retitled, “How We Roll”) about his relationship with Mike. In an attempt to increase awareness for the disabled, in August of the same year Tim ran from Orlando, Florida, to Chicago, Illinois, in 30 days. This enormous undertaking worked, because it got people’s attention. After holding a few fundraising events and gaining more and more momentum over the next 2 years, in August of 2007 the “Keep on Keeping on Foundation” was created. This foundation is dedicated to assisting individuals with physical disabilities and to motivating and educating others about how to make a difference in their communities. They accomplish this by being an advocate for disabled people through their speaking events and also by assisting families with the financial stresses of caring for a disabled child. “Keep on Keeping on” now boasts over 50 year-round volunteers, and since its creation in 2007 it has helped over 80 families pay for things like medical equipment, doctors visits, and home modifications.
After the creation and success of their “Keep on Keeping on Foundation,” Mike and Tim were being asked to speak at events to raise awareness for people with disabilities. Due to Mike’s quick wit and their willingness to be honest and politically incorrect (they use the word “gimp” frequently), they found that even though their message was an important, serious one, that they could make their audience laugh too. This realization is what led these two friends to create their stage show, “Handicap This,” and in 2010 they debuted their one-act play. The show is biographical in nature, and it covers numerous experiences that Mike and Tim have had together and what they have learned from each other. The show is designed to motivate, educate, and inspire others (sound familiar?). The stories they tell range from the humorous, like when they act out the time Tim first tried to feed a gooey, messy selection from Taco Bell to a spastic, 12 year old Mike, to the serious, like the time Mike talked of having suicidal thoughts to Tim, but they all work to open the minds of the audience. In addition to reaching as many people as possible with their message, the duo hopes to play on Broadway by 2016, and honestly, I would not be surprised if they do.
Mike is a person I greatly respect and admire as a speaker and even more so as a person. His dedication to helping other disabled people and advocating for their rights is something I aspire to achieve through Roll Models. You can find out more about Mike, Tim, “Keep on Keeping on,” and “Handicap This” at www.handicapthis.com. You can also follow him on Twitter and Facebook. I highly recommend his website, as it has a lot of entertaining, educational videos. If you ever get a chance to hear him speak, like I hope to soon, I would not pass it up. Due to all of the work he has done to help the disabled, as well as for his amazing spirit and outlook on life, I am proud to announce that Mike Berkson as the newest Honorary Roll Model.
The powers that be, and by that I mean me, have decided that it is time to name another Honorary Roll Model. After much deliberation and combing through numerous candidates who meet the criteria, I have reached a decision as to whom will receive this special title. This phenomenal woman has had her story told by numerous press and media sources, including ABC News, MSNBC, the Huffington Post, Yahoo, and the New York Daily News. She constantly advocates for disabled people and their rights, and she looks damn good doing it. The second Honorary Roll Model is Dr. Danielle Sheypuk.
As you will see, Danielle and I have a lot in common, which may contribute to why I find her so inspiring. She is a 35 year old clinical psychologist living in New York City. She has Spinal Muscular Atrophy and has spent her life in a wheelchair. Her psychology practice focuses on counseling disabled people in the areas of dating, relationships, and sexuality. I can speak from experience that this is a much needed service, since these are complex and confusing topics for everyone, and when you add the complications of having a disability into the mix they become even more difficult to understand. She even provides her counseling via Skype, and if you are interested in her services, you can find out more information on her website. As awesome and commendable as her professional work is, what she has done to improve the image the public has of the disabled is even more impressive.
Danielle is in high demand as a representative and spokeswoman for the disabled. As Ms. Wheelchair New York 2012, she got her first chance to show that you can be disabled and beautiful. She was always interested in fashion, but her foray into the fashion industry really took off at a cerebral palsy luncheon event in 2013. It was at this event, as she was
dressed to kill in some Louboutin booties, that she met well known fashion designer and fast friend Carrie Hammer, who dubbed her “Carrie Bradshaw in a wheelchair.” When Hammer came up with the idea of doing a fashion show using “role models, not runway models,” she immediately thought of Danielle. As a result, during this year’s New York Fashion Week Sheypuk became the first model in a wheelchair to “walk the runway.” Even though she couldn’t strut down the catwalk like the other models, she still commanded the stage. In talking about how she went about modeling for the show, she said, “My wheelchair is just a part of my body – an extension of me – and I’m the main focus, not the chair.” Her modeling career will continue this spring when she is featured in the Raw Beauty Project. This is a collection of images showing the world that you can be disabled and still be beautiful, glamorous, and sexy.
Danielle’s work to show the public that being in a wheelchair and having a body that is different does not mean that you cannot be fashionable, sexy, or attractive is something that will do a lot to alter how people view disabilities. She has said, “Fashion is about dressing the body you have. It’s about knowing what to accentuate.” Danielle has definitely mastered how to do this, and in doing so has finally given young, disabled individuals a Roll Model to follow. I do not know what inspirational and amazing things Danielle will do next, but I do know that she will look good doing it. It is because of all of this that I am proud to announce Danielle Sheypuk as an Honorary Roll Model.
Today I am excited to introduce a new segment to www.scottdrotar.com. I know that there are people that can motivate and teach you things that I cannot. So from time to time, I will be introducing you to some of the people who inspire me and giving them Honorary Roll Model status. In order to receive this prestigious title, you must meet the following criteria: 1) You must be physically disabled and in a wheelchair 2) You must live life in such a way that promotes awareness of disabilities and 3) You must live your life in agreement with Roll Models and its mission. If this committee of one deems you to meet the above criteria, you will be given the title of Honorary Roll Model.
The first individual to be inducted into this exclusive club was featured in a very powerful commercial during the Superbowl.
This man’s name is Steve Gleason. Steve played 8 seasons in the NFL with the New Orleans Saints. On the field he is remembered for returning a blocked punt in the opening quarter of the Saints first home game after Hurricane Katrina. As good as he was on the field though, what he accomplished off the field is much more impressive. Through his “One Sweet World Foundation,” he provided over 7,000 backpacks full of school supplies to children affected by Hurricane Katrina. He has also donated his hair to “Locks of Love,” and he was a frequent visitor to children’s hospitals in New Orleans. It turns out though, that he was just getting started.
In January 2011, Steve was diagnosed with Amyotrophic Lateral Sclerosis (ALS). This degenerative, neuromuscular disease, often called Lou Gehrig’s disease, destroys the motor neurons that allow your brain to control your muscles. Eventually this leads to paralysis, the inability to speak, and breathing issues that often result in death. Making this disease even more difficult to deal with is that it can manifest so late in life, as it did with Steve. He has had to sit back and watch as his body goes from the prototype of physical health, to being a cage that he is trapped in. I have always considered myself fortunate that I was disabled from birth, because I cannot imagine knowing life as an able bodied adult and losing it. I cannot fathom how hard that must be, but Steve has taken it in stride.
Steve has met this challenge head on, and he has done his best to make the most of his situation. On the public scale, he has started the “Gleason Initiative Foundation” to raise awareness and work to find a cure for ALS. He has also created the “Team Gleason House For Innovative Living,” which is one of only two houses of its kind, that is completely decked out with the latest technology to allow people with ALS to live full lives. You can learn more about these endeavors at www.teamgleason.org. He has also been a large proponent of showing how technology can be developed to greatly improve the quality of life of many disabled people.
As impressive and commendable as his acts of altruism have been publicly, I think what he has done in his private life is perhaps even more special. In October of 2011, 10 months after being diagnosed, Steve and his wife had their first child, Rivers. As a means to show her the amazing man he is, he is creating a video journal that captures his incredible spirit. He also frequently writes about his life, some of which he shares on his website. He continues to lead a full, happy life on his terms despite the obstacles he now faces. He has taken something that would cause most people to give up, and used it to create something that is to be admired and learned from. He is someone who I draw inspiration from, and I hope you can as well. That is why it is my pleasure to make Steve Gleason the first Honorary Roll Model.