Hilary Lister is a one-of-a-kind woman when it comes to determination. She has been using a wheelchair since she was 15 years old due to an illness called reflex sympathetic dystrophy, a degenerative neurological disorder, but she didn’t let her disease get in the way of reinventing her dreams.

First disabled woman to sail solo around Britain

Hillary gradually became a quadriplegic paralyzed from the neck down and is only able to move her head, eyes and mouth and needs to rely on other people for pretty much everything she needs. She also has a hard time breathing and just doing an interview might exhaust her. Despite of these setbacks she became the first woman with a disability to sail solo around Britain, which is approximately a 1600 mile journey, in 2009 at the age of 36. But the way she accomplished her triumph really pushed the boundaries of what is achievable in her condition without the use of arms and legs.

The sip and puff sailboat system

Hilary Lister

She was all alone in her sailboat strapped into a chair braving the rough open seas for many days. During the entire journey she basically relied on three straws to operate her sailboat. Being a quadriplegic myself, I can only imagine the “what if” thoughts of some potential disaster going around in your head when you’re all by yourself roughing the high waves with limited mobility. But at the same time, I can also relate to a statement she made during an interview with CNN: “When you leave the quayside, you leave behind the stresses of everyday life. Any sailor will tell you that. If you multiply that sense of freedom a thousand times, that’s how I feel. I leave behind my wheelchair, a team of caretakers and suddenly it’s just me.”

A Canadian engineer invented the sip and puff system that allows Hilary to control the sailboat through a series of commands she can give by either blowing or sucking through the straws, which are hooked up by pressure sensors to electric servo motors. For example, a puff in one of the straws works the tiller to go to port and a sip makes it go to starboard.

Sailing around Bahrain as next challenge

Hillary aims to assist other disabled or disadvantaged people accomplish their sailing dreams and therefore she has set up her own charity, Hilary’s Dream Trust. On April 13 she will be ready to take on her next challenge by sailing 100 miles around the Kingdom of Bahrain to raise funds for Bahrain Mobility International, which provides services to disabled people throughout the country.

Personally, I love Hillary’s motto: “Just go for it – live your dreams! We all have that same choice don’t we? You can live your dreams, or you can put up with the cards you’ve been dealt – I know which I choose every time.”

If you would like to read more about this remarkable woman, Hilary Lister, feel free to check out her website.

DisabledandProductive is excited that disabled artist Andrew Reach, who we interviewed last year – Interview with Digital Artist Andrew Reach – was selected with his work March of Humanity for a very special Art Exhibition of Orthopaedic Advancements, Wounded in Action. This exhibition features the art by soldiers, military personnel, surgeons and even civilians like Andrew who have been inspired by the brave fight our wounded veterans battle every day.

March of Humanity by Andrew Reach

Andrew created his work March of Humanity as a statement of hope for a better future without war. From the violent vortex of energy at the focal point of the image emerge peaceful beings, he calls “whimsies”. “Like musical notes in a symphony, they are reborn in brilliant colors. With freedom comes the ability of all of us to reach our greatest potential,” he says.

About Andrew Reach’s Motivation

Andrew Reach began creating computer-generated art when it became too physically challenging for him to continue as an architect, due to the chronic pain from Scheuermann’s disease. This condition, which usually starts in adolescence, causes the vertebrae to grow unevenly, increasing the curvature of the upper spine. When Reach had two surgeries for progressive symptoms of this disease, the bravery of those wounded in the Iraq and Afghanistan wars inspired him and helped him overcome his own obstacles from the disease. Working with the Art Therapy Studio at Metrohealth Hospital in Cleveland, Ohio, Andrew and his life partner Bruce Baumwoll are developing a program to introduce computer graphics. From this pilot program, they hope to bring computers into the VA to help our wounded veterans to heal. Andrew hopes his artwork will inspire them and others in difficult circumstances to overcome great obstacles, including the emotional pain induced by war. “Having my own orthopaedic condition and disability has tested me more than any experience in my life, especially my worth as a person,” he says.

click here to see the Wounded in Action website

Exhibits

March 9–13, 2010
Morial Convention Center, La Nouvelle Ballroom.
New Orleans, LA

April 26-30, 2010
Russell Senate Office Rotunda
Washington, D.C.

May through November 2010
National Museum of Health and Medicine at Walter Reed

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.

Ok, I don’t want to sound like I’m tooting our own horn here, but earlier today someone told me today that he finally visited this web site and really enjoyed it! He said that he thought the stories were really inspiring, and that he thinks everyone, not just those who are disabled, would be inspired by Luc’s story and experiences and the stories of the people we have interviewed.

For me, that was wonderful to hear, and helps to fulfill my hopes that we are doing something positive here. Encouragement and positive reinforcement is such a powerful force in anything, for anyone.

I’ll will try to remember that, and make it my goal that the next time I see anyone doing something that I think is good, or well done, I’ll let that person know.