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.

Wheelchair slalom: grab a few cones, set up a course, and you can have some amazing wheelchair races. Everyone looks like they’re having a great time and the team setting is just great.

Pretty fun stuff, enjoy:

direct link- http://www.youtube.com/watch?v=BhIU9Mo0TiU

The camera work may be a little shaky, but watching this guy go down the mountain on a skiing wheelchair is awesome. It looks like a ton of fun.

People who surf will tell you that there is something immensely freeing and satisfying in riding a wave and feeling the power of the ocean. After losing a leg in a car accident, Dana Cummings discovered that freedom and made it his mission to share it with other disabled people.

AmpSurf, short for the Association of Amputee Surfers, was founded by Dana and is a nonprofit that helps people with disabilities learn to surf. Many of them can’t imagine that they’d be able to get on a surfboard, and nearly all of them are nervous, but they all end up surfing.

Dana has said that he just wants everyone to be able to feel the rehabilitative power of surfing and the ocean, and this video shows that he is making a difference.

Congratulations to you Dana, and thank you for improving the lives of so many people.

I’m not sure whether this should be classified as a wheelchair or a tank… take a look and let us know what you think!

http://www.youtube.com/watch?v=hsyDqlRrSWE&feature=fvsr

Have you heard about the National Organization on Disability? If not, you are missing out an important resource to help you live life to the fullest as a disabled person. Founded in 1982, the National Organization on Disability is supported by grants from such notable organizations as the Ford Foundation, Lockheed-Martin, UPS, and the American Red Cross, just to name a few.

The mission of the National Organization on Disability (NOD) is to expand the participation and contribution of America’s 54 million men, women, and children with disabilities in all aspects of life. Our current focus is on improving employment prospects for America’s 33 million working-aged Americans with disabilities.

Although many of the programs of NOD are far-reaching and have impact at the state level, they still have plenty or resources to help the disabled. If you have a few minutes, take a look at what they have to offer.

National Organization on Disability

Anyone who has had to purchase a wheelchair accessible van, ramp van, or a lift van knows how expensive the customization can be. Taking a factory made van, lowering the floor, and installing a ramp is a labor intensive process. Nearly all of these vans are customized by relatively small specialty shops, and while these shops often do great work, factory support isn’t there if something goes wrong.

The MV-1

So we were excited to see that the first factory built wheelchair accessible van will be available soon. Dubbed the “MV-1″, and looking like a cross between a truck and a minivan, this new vehicle could prove to be very useful.

Wheelchair Pride has a nice story on this great new vehicle – you can see their article here for more information.

Aaron Fotheringham has taken a fact of life for him – being in a wheelchair – and converted that into something that can show others the power of resilience. In the first 20 seconds of this video, Aaron falls or crashes several times. It’s not the crashes that are important, though. It’s that he gets back up, keeps trying new tricks, and has almost single-handedly created the extreme sport of hardcore sitting.

We think Aaron is great and hope he keeps trying tricks and keeps living his dream.

UC Berkeley may be one of the most accessible, disabled-friendly universities in the United States. Much of that is thanks to one man, Ed Roberts.

Roberts, who became a quadriplegic after contracting polio as a teenager, was admitted as a student in 1962 to the Berkeley campus. He immediately found difficulty in obtaining campus housing, however, as campus housing officials refused to accommodate the 800-lb iron lung he had to sleep in.

Roberts used this as motivation, found housing, and eventually helped launch the Physically Disabled Students Program at the Cal campus. Rather than allow himself and others to be discriminated against, Roberts was part of creating an organization that changed disability attitudes and increased disability advocacy across the U.S.

So on January 23 next year, remember Ed Roberts and the extraordinary efforts he made to increase the opportunities for the disabled.

You can read the full story of Ed Roberts at the UC Berkeley web site.

Yesterday, on July 26, President Obama issued an Executive Order to increase the Federal Employment of the Disabled. Citing the 54 million Americans living with disabilities and the need to set an example and reduce workforce discrimination, the order notes that the Federal Government should be a model for the hiring of the disabled.

Additionally, the order has specific time-lines of 60 days and 120 days for federal agencies to design and implement strategies to increase the hiring of the disabled.

We think this is a really encouraging step and commend President Obama for his dedication to employing qualified Americans, no matter what their physical condition.

To read the full press report and text of the Executive Order, visit Whitehouse.gov.