Recently we had the chance to interview Sheila Radziewicz, who was born with TAR syndrome which left her without arms or kneecaps. Despite these difficulties and challenges, Sheila has gone on to be awarded a Master’s Degree, a black belt in Tae Kwon Do, and is now an inspirational speaker. Sheila shared with us some of the things she has overcome in her life, and how the experience has made her strong.

Disabled and Productive: You were born with TAR syndrome. Tell us a little about that and how that has shaped your life.

Sheila Radziewicz: I am the third daughter in a family of five. My parents had no idea that I would have a disability. I was born at Malden Hospital and was immediately transferred to Floating Hospital in Boston. I had a hole in my heart and a low platelet count, which are common issues to TAR syndrome. I came home for a short stay after my birth and then went back and did not return home until just before Thanksgiving. My parents have told me after I was born our family doctor had a very important conversation with them. He said ‘you have two choices with your daughter. One, you do everything for her now, in the future, and after you die – or you do nothing.’ My parents picked the latter which was not an easy choice.

I do not have a great many memories of my childhood but I do remember it being hard. I spent the first ten years in and out of Hospitals. I stayed in the Boston hospital until around 2 years old and then I went to Shriners.

I’ve grown up with great determination. I think that was a personality trait I was born with and then my family fostered that in me growing up. I had to deal with a lot of people making fun of me, staring, and pitying me. At a young age I realized that could hide my pain with laughter. So when other children made fun of me I would laugh with them and they stopped a lot faster then if I cried. Laughter was not the expected response so I guess it was not fun for them to continue. There was emotional and physical pain. I required the aid of leg braces, a walker, or both until I was about five years old. I had about ten major surgeries before the age of ten. I had to relearn to walk several times. I think having TARs has made me a strong person physically and emotionally.

Disabled and Productive: What is the most difficult thing you have had to overcome with your disability?

Sheila Radziewicz: This is always a tough question to answer. Since I was born with TARs, there are many things that others perceive as difficult that don’t seem that way to me. I have never known anything different so I’ve just learned to do some tasks differently. My life is a puzzle, and I need to figure out how to put the pieces together to get things done. I think dealing with other people has been difficult. I’ve meet many people who felt fear, pity, were just ignorant, or felt the need to help me when I did not need it.

Disabled and Productive: What would you say your biggest achievement is in life so far?

Sheila Radziewicz: I would say my biggest achievement is living independently. Living independently is hard for many people, and having a disability adds more struggles to that difficult situation. Finding a job has always been difficult because of other people’s biases, and there are many jobs that I can’t physical do, so that really limits my options. Finding the right apartment has, in the past, been a nightmare. In the past I have had to deal with small problems: second or third floor apartments, kitchens with spaces too high for me to reach, and space that was too small for me to set up things that work. There are small details that I need to take into account that most people don’t. I’ve had many people tell me that a place would fit me fine, but they don’t get it. For example, my current apartment does not have a dishwasher-which many consider a luxury-but not having one is a real hardship for me. I have looked at countertop dishwashers, but they are expensive. I have been able to learn how to care for my own personal needs and have surprised people when I have told them I do not have a personal care attendant.

Disabled and Productive: You have a black belt in Tae Kwon Do. First, congratulations! Second, what was it like starting to do something as difficult as Tae Kwon Do? Were you scared and nervous? How accommodating were your instructors and what was it like working with the other students? And finally, why choose Tae Kwon Do? What drew you to that specifically?

Sheila: I started martial arts while in graduate school. I saw a flyer and thought it would be fun. I’ve been through many scary things in my life but starting martial arts was not one of them. When in Arizona, my school mixed different types of martial arts into the school and so I did all of them the best I could. Initially, I never thought about which martial art style was best for me. When I returned home from graduate school I explored classes of different styles and found that Taekwondo was best for me. The body work focused more on the lower body and that fit my needs best. Also, Bruce McCorry’s school felt right-there was no judgment, no assumptions, and the space was welcoming. My instructors have been great at being accommodating when necessary. They have never decided that something would be changed before going over it with me before hand. If I’ve felt the need to stop they never questioned it. They also have got to know me very well and can tell when I’m hurting and need to stop versus me being lazy.

Disabled and Productive: What has Tae Kwon Do taught you? Did earning your black belt take more effort and determination that earning your Master’s Degree in Criminal Justice?

Sheila: Getting my black belt and getting my Master’s in Criminal Justice were both difficult in their own ways. Taekwondo kept me sane when working on my thesis-it was my outlet to release my stress. High stress was my life while getting my Master’s. I finished the program in two years and I was only the second student to ever have completed my degree that quickly. I did all my own typing and that was tiring as I type one handed with a pointer.

Taekwondo has been a long commitment and has helped me grow as a person. I have never been involved with one activity this long before. It has had its really hard days, and then just fun days and that’s important.

I remember sparring in the advanced class for the first time. I was scared, but people saw my fear and helped me work through it. They wanted me to succeed and so they used humor to get me to relax, and it worked. I got tips on how not to get knocked down so much. Now I look forward to Monday night sparring.

Disabled and Productive: What do you have to share with others and how do you think people can learn from you, be happier, and improve their own lives?

Sheila: I think it is important for people to believe in themselves, and if they really want something it is possible-it just might take some time. We are all going to have hard time and sometimes you need a good cry and then you get up and start again. Each of us has the power to make our lives as we want it; we just need to accept the challenges around us and move forward.

What I think others can learn from me is to never give up. I’ve done a lot of things in life; sometimes it was because I wanted it or I felt the need to prove that someone who doubted me wrong. My family will tell you the the best way to help me to succeed is to tell me “you can’t do that.” I’m also a fairly positive person, and even when things have fallen apart I try to find that light.

Disabled and Productive: How did your family help shape your attitude and how you approach life?

Sheila: Growing up my family has always been there to protect me and be there for me. My mom created a motto that I have lived my life by: The impossible only takes a little longer. My dad would ask ‘what are the four letters of American: I can’. They brought me up with a positive attitude and help me live in an able bodied society.

Disabled and Productive: What gives you inspiration?

Sheila: My friends, family and community all around me.

Disabled and Productive: Tell us about your relationship with Shriners Children’s Hospital, and how you have begun giving back to them.

Sheila: Shriners became my second home at a young age, and when I was too older for Shriners I left them saying that if there is anything I can do to give back, please contact me. I have had the chance to speak to donors about my Shriners experience and explain how important the care given at Shriners is to us.

I remember going to the hospital to speak to a young man from Poland who lost both of his arms in an accident and was learning to use his feet as his new arms. We spoke for a while, and I was able to give him some tips about using his feet to do things. Shriners called me about five years ago because they had a child with TAR Syndrome and his family was asking if there were others out there with TARs. Five years later the family and I have become great friends and I’ve been able to help them with their son.

Recent media attention I’ve gotten because of Taekwondo has strengthened my relationship with Shriners. As soon as I started getting interviews, I made it clear that Shriners needed to be put in any stories about me. I’m now working with Shriners as a patient ambassador. They had their 85^th anniversary with a walkathon, and I spoke to the crowd and the local media. We have discussed how we can foster this relationship and they are also helping to support me with my motivational speaking.

It sounds like you keep really busy! Besides the speaking and Tae Kwon Do, what other hobbies do you have?

I’m a bit of a social butterfly, my friends would say. I am actively involved in the drumming community. You can often find me at one drum circle or another, drumming, playing the didgeridoo, or belly dancing. I am also a fire performer; I dance and do tricks with my fire staff, and some of those moves come from my martial arts experience. I also love to spend time with friends hanging out, go to local festivals (depending on the time of year), go camping, and most recently I’ve begun working to become a professional motivational speaker.

Disabled and Productive: Finally, our favorite question: what are you most grateful for in life?

Sheila: My family and friends. If it was not for all of them, I would not be were I am today.

Philippe’s swim across the English Channel is a true testament of how to overcome your disabilities through determination. He didn’t take on this challenge just to prove to himself he could do this amazing feat, but he did it for all those who have suffered tragedy and lost their taste for life.

Philippe Croizon in wetsuit

And Philippe, a French native, certainly knows what tragedy is all about. In 1994, he lost all of his limbs after suffering an electric shock as he stood on a ladder adjusting his television antenna, which touched a power line.

Philippe expected the 21 mile crossover between Britain and France to take about 24 hours, but he completed the swim in just 13 1/2 hours. Maybe it was the company of three dolphins that swam alongside him for a good part of the journey that gave him the extra speed. Philippe trained for this swim for two years and was able to get himself into such a shape that he can swim at around 2 mph, which is only slightly slower than the 3 mph that able-bodied athletes might achieve. Not bad for a quadriplegic amputee!

Shortly after his amazing accomplishment, he announced he plans to cross from Europe to Africa in the Strait of Gibraltar. Philippe, we certainly wish you good luck with this next challenge!

Learn more about this inspiring man and his memorable swim by watching this short video.

Free Wheelchair Mission was founded in 1999 by Don Schoendorfer, who has a doctorate from the Massachusetts Institute of Technology, after he was inspired by the sight of a physically disabled woman in Morocco crawling across a dirt road. It certainly adds a challenge to life when you have a mobility disability. But setting that aside, the people who are physically challenged living in the more developed countries – like myself – may in some regard consider themselves lucky compared to those living in the poorer countries where access to the most basic wheelchair is practically non-existent.

Don took note of that unfairness and came up with the idea of creating a simple, durable and inexpensive wheelchair that would be distributed free to those in need on a non-discriminatory basis. As you can see from the picture, the wheelchairs are made using bicycle wheels and a cheap plastic patio chair. Now, how ingenious is that?

The cost of one wheelchair is around $60.00.  That is hardly anything when you think of the huge difference that one of these chairs can make in the life of someone in need, whose alternative would be to crawl across the dirt or being moved around in a wheelbarrow. So far Free Wheelchair Mission has given away nearly half a million wheelchairs in 77 developing countries.

One of my favorite anecdotes confirming what a difference this wheelchair can make is a story I read in the Los Angeles Times. It’s about a 5-year-old boy in the Democratic Republic of Congo. The boy lived in an orphanage for disabled children, where he spent most of his time lying on the floor except for trips to the bathroom. A week after the boy was given his new chair, the Free Wheelchair Mission representative who delivered the wheelchair was heading to the airport when he caught a glimpse of something familiar on the side of the street. It was a wheelchair. The little boy was in it being pushed by an older boy who was running. The boys were laughing.

Don, keep up the great work!

To learn more about the Free Wheelchair Mission, visit their website at http://www.freewheelchairmission.org

Phaedra Marriott-Olsen has been crowned Miss Wheelchair USA 2010. The Miss Wheelchair USA competition is very similar to the traditional Miss USA contest.  “The largest difference is that we did not do a swimsuit competition,” Phaedra said.  The contestants are judged on appearance, their accomplishments and goals. One of the major differentiators is that they are also judged for the work they do as leaders in the field for women with disabilities. The goal of the Miss Wheelchair America pageant is to promote glamour, self-confidence and community service. “Society just doesn’t think women in chairs are beautiful and the reality is we’re pretty amazing,” Phaedra said.

Phaedra Marriott-Olsen, Miss Wheelchair USA 2010

Phaedra became disabled in 1996 after being hit by a drunk driver, but she didn’t let her tragic accident stop her from making strides toward preventing more drunk driving incidents from happening. Instead she took on the position of Director of Services for Mothers Against Drunk Drivers.

Phaedra is an inspiration and a role model for women with disabilities. She now represents others in wheelchairs throughout the country and she plans to travel across the country to attend various events to promote individuals with disabilities.

“Just because you have a disability, does not make you a different part of society,” Phaedra said. ”We can still be active, intelligent people in our society. That’s my biggest goal.”

For more information about Miss Wheelchair USA, visit mswheelchairusa.org.

A few weeks ago we discovered and posted about a nonprofit started with the mission of helping to improve the lives of those with disabilities. Founded by Dan Cummings after he regained the ability to walk again through intense exercise, Journey Forward aims to help those with spinal cord injuries recover function and improve the quality of their lives. After reading about the program on their web site, we wanted to know more and recently had the privilege of interviewing Journey Forward and their founder Dan. Their words were a dose of inspiration, and reinforced our belief in the importance of helping others achieve their goals. Read on to hear about how Journey Forward is making a difference and changing lives one at a time.

(Disabled and Productive): Journey Forward’s motto is “Bettering Lives of Those with Spinal Cord Injuries.” Can you tell us what that means and how you go about doing that?

Lanyia Johnson and specialist Lisa Mikula

(Journey Forward): Our program uses intense exercise based techniques that are tailored to the specific needs of individuals with Spinal Cord Injuries. We provide the means to assist individuals toward achieving some of life’s most basic lifelong functions. We focus on both short term and long term goals for each individual and adapt their individual program to help achieve these goals. “Bettering Lives of Those with Spinal Cord Injuries” means something different to each of our clients. For some it is helping to build the strength and function to assist PCAs (personal care attendants) in daily life, for others it’s to independently feed themselves or even stand and take steps. The “Bettering Lives of Those with Spinal Cord Injuries” is focused on the individual and how we can work together to attain their goals of independence.

How is what you do different from other programs that are out there?

We use a very active and full body approach that tailors to each individual’s program plan. Many of the gyms that work with individuals with disabilities tend to focus on the client’s abilities and forget to work with the affected areas. We at Journey Forward focus on the client’s weaknesses and work on coordinating the entire body in a very functional and complete style. Our clients work on many different activities including gait training, load bearing, and full body neural stimulation. This aggressive and functional approach makes it possible for individuals to focus on personal goals of regaining function as well as daily goals of participating in an exercise routine.

Where did the idea for Journey Forward come from? What are the benefits that you are seeing for people in your program?

Ben Harris working with Journey Forward program director John Walters.

We are seeing a lot of great benefits-everything from increased strength and function of muscles below level of injury, to all of the health benefits associated with exercise. Specifically for our SCI clientele we are seeing benefits which include but are not limited to: increased bone density, improved circulation, prevention of muscle atrophy, decrease in spasticity, increased range of motion, increases in cardiovascular endurance, and a decrease in UTIs.

Tell us a little about one of your success stories.

Some of my favorite success stories are about those who have increased their independence and quality of life through our program. Kevin came to us a year and half after his injury as a C4-5 Complete (quadriplegic). Kevin had slight movement in his left and no movement in his right arm and was unable to even operate a power chair. After the first year in our program Kevin is now able to operate his chair and is performing a variety of day-to-day tasks that were once thought to be impossible. He now feeds himself, turns the TV and lights on and off, can open doors and is assisting in dressing himself. For Kevin the increase in strength and function has enabled him to be more independent so that he does not always have to ask for help. When clients hit milestones like these it brings great satisfaction to them and us. This is what makes our job so rewarding!

Your founder, Dan, was injured in a diving accident in 2000? How did his experiences following his injury lead him to start Journey Forward?

Dan doing upper body strengthening exercises

Dan is a very determined individual and the whole time I have known him he never took “No” for an answer. Being told by his doctors that he would never walk again, Dan became determined to prove that he would do the impossible. One day he would walk again! Once he accomplished his goal of walking and being independent, he wanted to continue his journey by helping others who stand in the very same shoes that he stood in seven years ago. His focus changed to bettering the lives of others who have suffered a spinal cord injury. Dan decided that he wanted to do anything possible to create a special place for individuals who suffered a spinal cord injury, so they too could work toward gaining independence. Dan continues to be passionate about his work believing that you can never lose hope. He strongly feels that with determination, hard work, and the proper resources, opportunities are endless. Dan had a calling in life and unfortunately it took a tragedy to realize what that was. Fortunately for us, and the millions of people that he inspires, we got to witness and be a part of his heroic efforts.

Where is Journey Forward located and how can people find out more – whether that’s to participate or to donate and support Journey Forward?

We are located in Canton, MA which is about 30 minutes south of Boston. You can find out more information on our web-site at www.Journey-Forward.org or by contacting us at 781-828-3233.

What are your dreams for the future of Journey Forward?

To receive the funding and support from donors so we can continue making our program known and accessible to everyone who needs it. In the upcoming years we wish to open more locations across the country so people do not have to travel as far to get care.

(for Dan) What is the most difficult thing you’ve had to overcome since your injury?
The death of my brother – something that I will never get over. But I assume that this question is aimed towards my “disability” so my answer to that would be overcoming paralysis and regaining the ability to walk again.

(for Dan) Did the challenges around your injury make you stronger as a person?

Absolutely!!!

(for Dan) How have your goals in life changed since your disability?

When I first broke my neck my only goal was to walk again – everything in my life revolved around that. Now that I have done that – my goal is to open Journey Forward (centers) around the country to help others do the same while still working on my weaknesses as well – I still have a lot of work to do myself when it comes to training.

(for Dan) What gives you inspiration on a daily basis? How do you recommend others dealing with a disability find their inspiration?

Before I began walking what drove me was just the simple “thought” of walking again – that is what drove me and I was not giving up until I turned that thought into a reality. Today my inspiration to do what I’m doing in regards with Journey Forward, are all my clients who come rolling through our doors – because I want to give them their opportunity to walk again.

My advice to somebody who is dealing with a disability would be find a goal or an aspiration in life and go for it. I realize that not everybody’s goal is to walk again for one reason or another but do not sit back and feel sorry for yourself and rot away. Life is not over after suffering a serious injury – my life only got better. So find out what it is in life that you want and go for it.

As with any organization, The Boy Scouts of America have rules and guidelines that must be adhered to. When Nathaniel Schrader of Chantilly, Virginia, joined a local Boy Scout troop, the leadership was hesitant. They werenʼt sure how a boy with cerebral palsy would be able to fit in or even progress within the ranks with all his limitations. The leadership offered information on another troop in the area that served mobility impaired scouts but Nathaniel wanted to stay with his Cub Scout friends, all of whom chose this particular troop. Leadership wasnʼt sure how to teach a scout with so many limitations.

Nate in Boy Scout Uniform

Nate’s first new scout campout was on a boat with very steep ladders. Scouts quickly scampered down the ladders and were off playing a game. Nate, with his equipment on his back, arrived at the ladder, and quickly stopped abruptly in his tracks. After all, a steep one person enclosed ladder and a physical impairment never go together well.

The scoutmaster stopped as well and so did the many scouts waiting so impatiently behind him. Everyone silently waited to see what Nate would do next. Everyone looked to Nathan’s dad for help. What should we do? In the time it took adults to figure out how they were going to get Nate down this tiny one person steep ladder, Nate threw his backpack down ahead of him, turned himself around and took one hesitant careful step at a time. That was the minute everyone in the troop knew that Nate was not going to be stopped. Sure, he was extremely slow and sure he was scared. But surely, the leaders standing there were in awe of this 10 year old boy figuring out a way to keep up with his peers on his own.

Keeping up with his peers became a challenge for Nate as he worked tirelessly through each requirement. He needed to learn to put up a tent using only one hand, do the knots and lashings required and keep up with the hikes and challenges of the troop. On long campouts, simple modifications and safety drops needed to be put in place in the event Nateʼs legs could not continue due to his hemiplegia, or if a safety issue arose. Truly though, Nate never used the special accommodations. His scoutmaster, Ron Campbell, once said: “Nate is the only scout who doesn’t complain on the long hikes during a campout and of all scouts he would have the right to complain!” Nate was never the fastest, never the quickest, or never the first to arrive on a scene, but he always reached the goal.

Campouts werenʼt the only places Nate needed to persevere. Summer scout camp presented the most challenges. Many of the skills and activities offered were set by strict rules and safety guidelines and camp counselors were trained to adhere to those rules no matter the circumstances. This made coming up with modifications for Nate to participate using only one hand difficult at best. For future campouts, leadership learned to investigate activities for Nate before registering the troop for a particular camp.

Merit badges also presented some challenges. Some merit badges are choice driven. However, some are “Eagle Required”, which means if you want to earn the rank of Eagle, you must complete them. One in particular was a major challenge. The “Eagle Required” badge was a choice between swimming, hiking or biking. Because he is not a competent biker, and not a long capable swimmer, Nate chose to work through the hiking merit badge. Hiking was the last badge he needed to earn Eagle. For the summer of 2009, hiking was going to be his goal. Nothing else mattered to Nate besides earning that hiking badge.

Raising support for Eagle Scout Service Project

Hiking with legs of different lengths is not easy. Nate knew he needed to manage his special needs and the requirements of the badge. So he called on one of his physical therapists, Connie Johnson. Connie helped Nate keep not only the usual safety goals in mind for the hikes but his personal needs as well. Muscle spasms from overuse were the main concern. With safety in mind, Nate’s new shoes were on and he hiked, and hiked and hiked. Very quickly, his muscles got sore, his nose and cheeks sunburned and he was tired, but he somehow managed to continue his hikes.

First it was a walk around the neighborhood, then a trail walk to his local high school. He slowly built himself up to a 5 mile hike, then another. He completed a ten miler around a battlefield with his family members.  He brought friends on some hikes and it was his dog Benny that accompanied him on others. The soles of his brand new shoes were soon dusty, dirty and worn out. His shoes looked as thought they were saying “I give up!”, but Nate wouldn’t. He bought a new pair of shoes, retired the old pair and moved on for a new hike. Soon the completion of the badge he so vigorously sought was earned.

After many years of traveling with the troop, attending summer camp and working through the ranks of scouting, Nate had one last hurdle – the Eagle service project to the community. He chose to build picnic tables and benches for his local community pool association. In order to raise the funds needed, plan the blue prints, acquire necessary supplies and manage the project day, Nate knew he needed a force of many. He called on his friends, neighbors and family members. Old tables were demolished and removed and new tables and benches were built. When the project was finished, Nate wrote the report required to receive the approval signatures and scheduled his appointment with The Eagle Board of Review.

After all the challenges he faced, he thought a sit down meeting answering the questions of scouting officials would be one of the easiest hurdles he would face during his scouting career. After all, he had prepared by studying his book, doing practice questions with his parents and even talking to Eagle scouts for information about what to expect. He was prepared and all the true challenges were accomplished and checked off in his scout handbook.

The morning of his Board of Review, which took months to schedule, a very unexpected challenge arose. Nate had a fever of 102. Anyone with Cerebral Palsy is at a risk for seizures, especially during a fever. There was a potential for the fever to quickly be the start of a much more serious condition. Nate had good reason to call and cancel.  Certainly the team of scout executives assembled would understand. As Nate headed back to his bedroom, his parents were ready to pick up the phone to reschedule, but before they could, out came Nate in his full dress uniform ready to face yet another challenge. He didnʼt want to cancel. He had fought hard to arrive at this day, and no fever was going to stop him. So Nate, dressed in his formal uniform with a smile on his face, wiped the sweat from his fevered forehead and faced this last big challenge head on.

Nate, now 15 years old, will celebrate his Eagle Court of Honor award on August 28th, 2010. His family and friends will be there, his scoutmaster will be there and so will his therapists. His last hike will be down the aisle to have the Eagle award placed in his hand. He canʼt shake with his left hand well, as scouts are required to, but after four years of learning from Nate, his scoutmaster, the scouts in his troop, the Scouting executives and the people in the audience all will be reminded once again that doing it differently, doesn’t make it wrong.

Contribution by Deidre Schrader

What do you do when you have no arms and no legs? Your life may seem overwhelming because you may feel like you are missing out on so many things you are unable to do. Nothing is more untrue according to Nick Vujicic, who was born without arms and legs. It is all about attitude! If you concentrate on what you do have instead of what you don’t have, you are setting yourself up to become a happy person. Be thankful for what you have; don’t be bitter for what you don’t have!

Being a C5/C6 quadriplegic, I can relate to Nick’s inspirational message quite well. It’s easy to feel sorry for yourself when you’re disabled and to blame your disability when you run into adversities. I have been there many times! And, just like Nick, I feel that having a positive attitude is the foundation for being a happy person regardless of whether you are disabled or not. I truly believe keeping a bright outlook on life after my disabling accident is what has allowed me to live a good life.

Nick certainly takes attitude and inspiration to the next level. Despite having no limbs, Nick is probably one of the most accomplished and happiest people in the world. One can only imagine the challenges he faced during his childhood years being ‘different’. But, he never gave up and instead turned his limitations into opportunities.

Now at the age of 27, Nick travels all over the world inspiring and motivating millions of people from all walks of life. He believes there is a purpose in the struggles we encounter in our lives and that our attitude towards those struggles along with our faith can be the keys to overcoming the challenges we face. Watching his humorous and inspiring introductory video will encourage you to reflect on your own situation and will very likely remind you that life offers a lot to be grateful for, whether you’re disabled or not.

Nick, you are a true inspiration and an example for all of us!

We recently had the opportunity to get in touch with an inspiring young man who started his own t-shirt company, Madhouse Tees. Jared Aronson lives with Duchenne Muscular Dystrophy every day, but his humor, his art, and his outlook on life are what define him. And considering what he has to live with every day, that is both amazing and inspiring. In Jared’s own words:

“Imagine having a dream where your whole body has slowly been dried into a giant block of immobilized concrete and where the only way to do anything for yourself is with the help of others. Even the most basic task, breathing, can’t be done without the sucking and blowing of a battery operated box. To most people this would be considered a nightmare but to me this is my life.”

The motto of Madhouse Tees is “If You’re Not Laughing You’re Not Living” and it’s truly applicable not only to Jared’s business, but to how he lives his life as well. We were able to interview Jared and find out more about him and his art; for a background about Jared and his company please see the story here. We hope you enjoy the interview!

Despite your disability you still managed to get your high school diploma.
What were some of the toughest challenges during your schooling?

Keeping up with homework always seemed to be a little difficult because I get tired very easily.  I had an IEP written for me to help adjust my homework load, but I always wanted to show everyone in my class that I was just like them.  Being in a wheelchair you’re already different enough, so you try to do everything you can to fit in with the other kids.

Have you fully accepted your condition or are you yearning for a cure as many severely disabled people are?

I feel that I have fully accepted my condition. I have never once searched the internet to even research my disease. If a cure is ever available, I will hear about it.  In the meantime I choose to live my life to the fullest with the cards I’ve been dealt.

What is the most difficult thing you have had to overcome with your disability?

I’d say the most difficult thing that I’ve had to overcome is dealing with social obstacles. The more dependent I become, the harder it is to have my own social life. I can’t ever be left alone due to my dependence on a ventilator to breath. There isn’t any privacy in my life, which makes all my social experiences less sacred.

I’ve always had a couple of good friends, but it’s hard for me to just go and hang out with someone. Being friends with someone like me involves a lot of sacrifices on their part.  A lot of planning has to be done and there are only so many things I can do.

It’s also difficult knowing I’ll never be able to have a family of my own or a real relationship with someone.  There are a lot of things we need more of, but little Jareds isn’t one of them.

What gives you inspiration day after day and how do you maintain your positive attitude?

To keep a positive attitude, I try not to take things too seriously.  I’m always trying to make others laugh and that helps me to stay upbeat.  I’m a very happy person, which I can attribute to my ability to laugh at anything.  My company’s motto is “laughter is life” because I feel if you’re not laughing, you’re not living.

My inspiration comes from my love of drawing. Creating art is extremely enjoyable for me. It’s my nirvana.

You already had a passion for art when you were just a few years old. How did the disease affect that passion?

When I was first put on my ventilator I wasn’t able to speak for about a year. Which, if you know me, is like Jesus without a beard. After my voice was taken away I went through a brief stint of depression. During that time I had no passion, not only for art, but for anything. Fortunately for me, they make happy in pill form, which helped me get through that rough patch.

I looked at your website www.madhousetees.com and your tees are really funny, creative, and original. Which one is your favorite and why?

I’d have to say my favorite t-shirt is the snowman design. With my tees I try to be as creative as I can. In my opinion, that design is my most creative. It still makes me smile when I look at it.

Which T-shirt is your bestseller?

The Hey Yo t-shirt is definitely the best seller.  It’s simple and funny and I think that’s what people like about it.

How did you come up with the name Madhouse?

Growing up in a house with six siblings and up to eight dogs at a time is the main inspiration for the name. My house was always a little loud and a little crazy, but always a lot of fun.

What are the biggest rewards you get from your art and your business?

There are many rewards I get from my art and my business. First, I love to see people’s reactions to my t-shirts. Many people can’t control their laughter while viewing my tees. It’s a good feeling seeing people laugh at my work. Second, learning about all the different aspects of how a business works has been enjoyable for me. I’ve learned lots and I still have lots more to learn. And last, I’ve met many great people whom I would have never met without having started my business.

How long does it typically take to finish a design and what kind of adaptive tools do you use to produce your artwork?

On average, I spend up to twenty hours per design.  The first step in designing one of my t-shirts is to do a rough sketch in Photoshop.  I then take the design and import it into illustrator where I complete the design.  Before I learned how to use illustrator, my designs were done exclusively with Photoshop.  Using just Photoshop my designs were basically drawn pixel by pixel, which was very tedious.  With illustrator it makes it a lot easier because you are able to click and drag to draw shapes and lines, saving hours of work.

I use a trackball mouse using just my thumbs to create my artwork.  My left thumb controls the ball and the right thumb controls the clicking.  I’m naturally right handed, so it was a hard adjustment learning to draw with my non-dominant hand.  My hands are placed on my lap atop a heating pad on a pillow.  I’m not able to draw if my hands get cold.  It can take up to ten minutes just to get my hands positioned properly.

Another must have for designing my shirts is an on screen keyboard. I’d be lost without it.

Besides art, what other hobbies or interests do you have?

I am a huge fan of movies. I’m not really a scary or western movie kind of guy, but I’ll watch any other genre. Chick flicks are even occasionally viewed on the flat screen. Without chick flicks my chest would be embarrassingly hairy. It’s well known, a good action movie will put hair on your chest, and with chick flicks having the opposite effect, they are a must.

If you were to ask me what my favorite was, I’d promptly say “Kill Bill”. Love that movie!

Do you have any big plans for the future?

In the future I’m going to try my best to grow my business dramatically.  It would make me really happy to see my shirts sold in many locations throughout the country.  The more people I can make laugh with my shirts, the happier I’ll be.

What is the most important piece of advice you would give to those who are struggling with their disability?

The most important piece of advice I could give would be to surround yourself with as many good friends and loved ones as you can.  I know with me, the more social I am, the happier I am.   The best tool to stay social is Facebook. I feel Facebook is an amazing tool for people with a disability.

And my final question: what are you most grateful for in life?

I’m grateful for my family and my friends.  My family has gone out of their way to help me live a somewhat normal life.  To them I’m not much different than anyone else. I just have more physical needs than they do.  I have a small group of awesome friends that I am also grateful for.  A lot of my caregivers have also become good friends.  Like Hugh Hefner most of my friends are women.  The only difference is that none of my women own a pair of bunny ears!

If you are interested to learn more about Jared’s funny t-shirts, check out his website at www.madhousetees.com. You might find yourself a tee you really get a kick out of which will certainly put a smile on some people’s faces when they see you walking or rolling around wearing it.

GILFORD – It’s one thing in life to find something that you love to do and it’s quite another to find that something only to have it taken away from you. Even more miraculous is when, what was taken away, is restored.

Jared Aronson is an artist and has been since he was a child. Every since he can remember he has had a love for drawing and he has parlayed that love into a successful T-shirt company called Madhouse Tees (www.madhousetees.com). Jared’s T-shirt designs are both whimsical and irreverent, poking fun at society’s norms, the advertising industry, history and everyday life in general.

Now 23, his witty ideas translate well to the T-shirt medium and are popular with people of all ages. One shirt parodying the popular line of John Deere Tractor equipment and subsequent advertising campaign is green and yellow with footprints on the ground and asks, “What deer?” Another shirt features the man in the moon with an American flag sticking out of his eye remarking, “Thanks a lot Neil.”

Jared’s dry sense of humor comes out in every shirt he designs including the one portraying a banana slipping on a person. This unique humor has come in handy throughout his challenging life. You see, Jared is confined to a wheelchair and only has the slightest use of his thumb making his artwork all the more remarkable.

Jared’s parents first realized that something was wrong with their son when he was late to walk for his age. When he finally did get on his feet, he began falling around the age of four. A battery of tests confirmed that Jared had Duchenne Muscular Dystrophy, a progressive disease marked by the steady wasting of the muscles. Aronson’s health began to deteriorate steadily and he is now confined to a wheelchair and bound to a ventilator 24 hours a day, seven days a week and needs to be accompanied around the clock by his parents and nurses.

There have been some close calls for Aronson, who has lived in Gilford his entire life. In fact, Jared received his diploma from Gilford High School while in Concord Hospital, where he spent 17 days in the intensive care unit after catching pneumonia. At one point Jared weighed just 52 pounds, down from his normal weight of 120 pounds. Throughout the progression of the disease, Jared has lost more and more of his ability to move. He has been seeing the therapists at Summit Rehabilitation in Gilford for a number of years and receives treatment three times a week to remain as flexible and limber as possible.

When Aronson was first attached to a ventilator, he lost his power of speech. It took a while to track down a trach, or tube that attaches to his throat, identical to that which was used by Christopher Reeve, which allowed Jared to speak again.

The way in which Aronson creates his artwork has also changed over the years due to his disease. “I used to use pens and pencils and then a computer mouse but after a while I was not able to even do that,” said Aronson.

Jared gave up on drawing for a long period of time after he could no longer manipulate a mouse. He was essentially resigned to the fact that he would no longer be able to do one of the things he loves to do most in life. Then, he found that by using Photoshop it allowed him to draw using just his thumb and a sensitive track ball. He was once again able to pursue his passion, although in incredibly painstaking fashion. In fact Aronson says its takes him over 20 hours to create a single design.

He begins by sketching the artwork, whether it’s from a preexisting design being parodied or an original design, and then filing in the colors pixel by pixel.

Aronson first became interested in designing T-shirts when he was asked to do a design for the Aaron T. Francour Memorial Basketball Tournament. He has since continued to design the tournament’s shirts while also taking on many other projects such as designing shirts for a pig roast and creating designs for his friends.

Jared continues to develop new designs and in fact he has just recently added four new T-shirts to his website and has countless other designs ready to go to print. He is also willing to take other’s ideas for a design and incorporate those designs into a shirt.

Aronson’s entire line of T-shirts can be found at www.madhousetees.com and they would make an excellent gift this holiday season for those who appreciate an off-the-beaten-path sense of humor.

We at Disabled and Productive recently had the chance to interview Jared, and if you’d like to find out more about his inspiring story, please take a look at our interview of disabled artist Jared Aronson.

This is the second half of an interview we did with an inspiring artist named Andrew Reach. For part 1 of the interview please go here. In this second half, Andrew talks more about the creation of his art, and what inspires him.

"A Tailor's Sample Cut From a Bolt of Summer", 2008

D&P: How has your disability affected your relationship with your partner?

Andrew Reach: Well we had a really close relationship even before the disability, but the whole thing has just brought us closer. Like last night we went out, and we have been in love with each other all these years, and just very good friends too, and I am so lucky to have someone by my side, and have that support.

D&P: I have been lucky too, I can’t imagine things without that support. Ok, now I think we’re getting into your favorite subject. Why is art so important to you?

Andrew Reach: If I didn’t have the art, I’m not really sure what I’d have right now. It gives me my lifeline to the world.

D&P: What makes your art so special?

"Archaic Archetype Number 1", 2009

Andrew Reach: Oh I don’t know… I don’t know that it’s special. I’m very overwhelmed by the effect my art has had on people. Oh… Bruce just came in, and he said I have to add to my last answer. He said I do my art because it gives me hope, and he’s right about that. It gives me a lifeline. Ok, so what makes my art special… when I started doing the art, Bruce got me the equipment – the computer equipment I use to make my art. We started putting the art up on the walls around the house. It was just for us, but a neighbor saw it, who has a friend with an art gallery, and she was blown away by it, and a week later someone from the gallery came by and they gave me an art show. They just said it was different, like no one had done this type of thing before. People were telling me they just hadn’t seen something like this done digitally before.

D&P: I’m wondering… if you do something with your hands like painting it’s easy to be very expressive, but I’m wondering how easy it can be to do that with a computer.

Andrew Reach: In the great abstract expressionist artist Jackson Pollock’s drip paintings, what he said is that he was channeling the art, like it was just going through him to the painting. He started using sticks as tools instead of traditional brushes because for him it was a more direct thing from the brain to the canvas. I like that a lot – but you can’t quite do that with a computer, but you can in a way though. Somehow I get myself into a zone where my mind, and Photoshop, and the mouse just all seem to work together in unison. I get myself into a trance-like state, and that’s where a lot of the intricate patterns in my art come from. It’s almost kind of a meditative state, and when I get more relaxed, the brain just starts to open up for me somehow.

D&P: Like an escape from reality.

Andrew Reach: Exactly, it’s like that. It’s always a process of being in the moment, making my art.

D&P: So do you do your art in a one-time shot?

Andrew Reach: No, no, it takes me a couple weeks. It’s kind of a chaotic process, because I have to stop in the middle. I do it in bits and spurts, and that maybe is better, because it ends up being something different from where I thought when I started.

D&P: So a little bit of a journey.

Andrew Reach: Right, right. And it’s never perfect, I mean that’s something to realize. There never is really anything perfect – in architecture, art, anything.

D&P: How long did it take you to become proficient with all this software where you felt like you could really express yourself.

Andrew Reach: I’m still working on it! Photoshop is like a bottomless pit! I kind of just started using it – I was making these cards for Bruce where I cut things from old vintage ads – and I learned how to cut things out, learned about layers, and slowly learned the basics. Photoshop for Dummies actually helped and the rest was trial and error. I had used CAD programs before (computer assisted design) so I had some basics with this kind of thing, but it was very challenging to really get proficient. It took a few weeks before I really felt like I could make anything of merit in terms of art. After about 6 weeks I created what I felt like was my breakthrough piece - Lost in a Place Where Pain Does Not Live. That piece was the first one where I really felt like I could tell myself that I was able to express myself with my computer. Actually what you see on my website, www.andrewreach.com, is all consecutive, in terms of when I made them.

D&P: You know your work almost looks like paintings.

"A Day At The Races", 2008

Andrew Reach: Yeah a lot of people wonder about that – “is it a painting, is it not a painting?” It’s very exciting, to be at a time with this technology, it’s like the very birth of this type of art.

D&P: So my next question I think you answered, which is how long it takes you to finish a piece.

Andrew Reach: Well it depends but typically a couple of weeks.

D&P: So I also wanted to talk about the rewards you get from your art.

Andrew Reach: Well really just getting things into the world and seeing how people respond to it, and seeing how people are inspired by it. That has been not only a surprise, but now seeing the joy it brings to people, it brings a real feeling of satisfaction also.

D&P: In what way do you feel like you are giving back to the disabled community?

Andrew Reach: I guess exhibiting the art and having people see what I can do. And also now I have all this knowledge of what I’ve gone through, and now with this art therapy project I have, there’s going to be a lot of work with it, but I think it’s important to do.  If someone else can be helped like it has helped me through computer technology that would just be wonderful.

D&P: I’d like to talk about the art therapy in a moment – but I want to ask what your favorite piece is.

Andrew Reach: I don’t, I don’t have one.  They’re all my children.

D&P: How long have you had the website?

Andrew Reach: Well, after my first show, I realized people wouldn’t have any way to see my art, so I just got Dreamweaver for Dummies, got a domain name, and set it up. You know, people said I shouldn’t put all my art up there, but I want people to see it! With the world, and technology these days, I feel like it’s important to have something like that.

D&P: I feel the same way

Andrew Reach: Your website is wonderful, by the way.

D&P: Thanks. Yeah, I’m trying to reach out to people, be inspiring with a positive message – that the world doesn’t end when you become disabled. So, I want to ask about your exhibitions. Do you attend all of them?

Andrew Reach: Well, I’ve been very very lucky to have received all the recognition I have. Some of the exhibitions have been outside the area – San Francisco, Chicago, Vermont, and so I haven’t been able to attend all of them. I’ve only been to 3 exhibitions of the ones I have had art in. I mean, it’s ok because the art is what’s there and what speaks on my behalf.

D&P: Now, I want to ask about your Art Therapy Program. First of all, how did you get involved in this?

Andrew Reach: Bruce and I started seeing a primary care physician, he’s a really nice guy, and when I first saw him we talked about my issues and the art came up. He told me the Metro Health people (the clinic I was at) about my artwork. Bruce and I had come up with the idea to start a foundation called Reaches Far. So this is a dream of ours to do someday. A way of giving back the art to help people. So when Metrohealth told us about the very special art therapy program they have, we hoped to be able to help. So the discussion started around wanting to bring computer technology to help people, and I was able to connect them with the right resources with Photoshop, and with Epson, for a grant for software and a printer. This place has the oldest art therapy clinic  – since 1967 – and I just talked with them and now we are seeing about how we can go forward with integrating the computer technology into the art therapy they do there, which also involves music, painting, crafts and pottery. The clinical Art Therapist’s role is to be a facilitator, a sort of bridge that helps patients walk across to a new side of consciousness that had never been opened up before. The process is healing and the physical manifestation is the art produced, each telling its unique story of perseverance. Bringing in computers would give the Art Therapists another tool to work with and considering so many young people who are computer literate, the computer could greatly benefit some patients.

And so eventually for 2010 it’s my hope that some of the work done by people in the art therapy clinic can be exhibited alongside mine in a special exhibit to promote and educate the public about Art Therapy and the Healing Arts.

"Super Hero", 2008

D&P: Is this a volunteering thing?

Andrew Reach: It is, it is. There is an artist-in-residence program, but it’s not really something that I would be able to do as it requires the artist to spend a week with the patients, so what I am doing now is strictly volunteer. And it’s going to take a while to get it fully integrated, to develop the libraries of images to have available for people to use so that the people in the art therapy clinic can do this.

D&P: So what has given you the most satisfaction: your current art, or your architecture before you became disabled?

Andrew Reach: Oh, well, I guess right before my surgery I was kind of at a high point of where I was with architecture, and I’ve come to terms now with not being able to do that any longer. I guess I can’t choose between the two: the satisfaction comes from just being able to do something. Being an artist is a great thing – I mean, I’m reaching a lot more people with my art than I ever did with my architecture.

D&P: What about your hobbies?

Andrew Reach: I listen to a lot of music, but not when I’m doing artwork. I would say music and reading.

D&P: Pretty typical for someone who is limited in their physical capabilities. Do you have any big plans for the future?

Andrew Reach: So with the art therapy program, and the exhibits, I hope my story gets out to more people because I think it can inspire. I mean if people see what went on with me – maybe they are going through something themselves and they can be inspired by my art.

I also wanted to make sure to mention, my computer broke a couple of months ago, and I didn’t have the means to get a new computer for myself, and had no prospects, and was getting to the point where I was feeling hopeless again. Our dear friends Jimmy, Karen, and Julie bought me this new computer. They’re very special people – you know, there are guardian angels out there. So I wanted to thank them.

D&P: Well, this has been great, and I want to say thank you for spending so much time with me and in being so detailed with all of this.

Andrew Reach: Your welcome, it’s been a pleasure.