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Life Updates!

10168193_10153135718524073_6131315805383737258_nIt has been sometime since I posted. I’m happy to say that I made it through this harsh cold winter. I realize this was a difficult season for many but as the snowstorms continued I realized how having a disability affected my ability to go out. I found myself staying at home. I was extremely thankful that my job continued to cancel work because of the harsh conditions outside. Even after the storm stopped going outside was a concern.This winter definitely tested my limits and had me asking for help. As they get older I have learned that asking for help is okay. So as this winter was difficult the early winter brought the publishing of my book and the end of winter brought my engagement!

The spring is bringing lots of wonderful fun energy to my life. I attended my first archery class and am looking into waterskiing. On the professional side book sales are soaring! I just did a relaunch of my website if you haven’t seen it already please take a look.

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That is all for now.

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Medical Advocacy

This past fall I went to a conference in Boston and one of the panels spoke about medical care for people with disabilities. This made me realize that as a person with a disability it was important for me to stay up to date on my medical care. This promoted me to make my annual exam. I realized something that was not happening for me when I went in for regular doctors appointment was getting my blood pressure checked. This particular task is a bit of a project for me as I do not have arms and need to have my blood pressure down on my leg. When I was in graduate school I had a horrible experience with nurses who did not how to take blood pressure on me. And even worse were trying to make me go on medication when they didn’t know what they were doing. As it turns out they were not taking my blood pressure correctly and that is why it was perceived for me to have high blood pressure. That experience taught me to educate myself more about blood pressure and doctors responsibilities.

After that I did educate my doctors about blood pressure and how to do it on me but for some reason in seven years my blood pressure had been taken only once. I don’t have concerns about it but high blood pressures is in my family so it really should be happening especially since it’s a standard thing to do at an annual exam. Apparently though it is not a standard thing to do if you have a disability. So I went for my doctors appointment this week and I told them you haven’t taken my blood pressure in six years. The nurse was apologetic and then proceeded to justify why they hadn’t done it. They probably were too embarrassed to ask you how. The bigger question for me is why are they not educated. I except that with my disability I tend to have to teach the world how I do stuff or how things get done for me and I guess at a doctors appointment it’s no different. That day I taught the nurse how one does blood pressure on a leg. Explained to her that you can’t just use any cuff and I need to be laying down otherwise I will probably have high blood pressure.

For me this is then just a minor thing to have to deal with but other people with disabilities deal with more major issues. It is 2013 people with disabilities are not getting adequate medical care because of ignorance and lack of education. When I listened to the panel on medical advocacy it was outrageous the things that have happened to other people with disabilities around medical care .At this point in my life I’m thankful for the amazing medical care that I’ve received. I am also thankful that I have the ability to advocate for myself and have been able to avoid some major issues. We need to remember the doctors don’t know everything and as a patient we have the right to question them. They need to be able to give us informed information about our care. They also need to be providing us with the same care that they get every other one of their patients regardless if that means they need new equipment or education.

I love the positive thoughts of this poem!

A short poem I wrote.

I am more.
I am more than the colour of my hair.
I am more than the clothes and shoes that I wear.
I am more than a number on a scale.
I more than whether my skin is dark or pale.
I am more than the religion I believe. 
I am more than the pocket money I receive.
I am more than whether I’m a girl or a guy.
I am more than whether I’m loud or shy.
I am more than the acne on my face.
I am more than just a country, just a race.
I more than my grades at school.
I am more than how popularity deems me cool.
I am more than the accent I have.
I am more than a ‘posh snob’ or a ‘chav’.
I more than the wheelchair I ride.
But you cannot see that…

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The 4th World Youth Taekwondo Camp


Over the last week I have had the chance to experience some fantastic opportunities. I was invited back to South Korea to speak at the 4th World  Youth Taekwondo Camp. There were approximately 300 people from 30 different countries at the camp. Through out the week I was approached by many youth who had seen my story on television and were inspired. I was part of a special lecture series and had the chance to inspire youth.  I had several encounters with the local media far more than I ever expected. I made friendships with Olympic medalists and trained with Taekwondo Masters from all over.  I was also was reminded of my own limitations despite my determination to succeed. Image

Our, myself and Danielle, travel to the camp was long as we had a 14 hour air flight to Korea and then a three-hour bus ride to our hotel in Muju, South Korea. Upon arrival we went straight to sleep for we had a full day training the next day. The arrangements that we had in Muju were beautiful the view of the mountains from the room was amazing. Since we got in so late, breakfast was our first true opportunity to meet the other participates. We meet a mother and son from Jordan and got to hear her son’s journey to the camp which was not the easiest. I also found out that my story had made a difference in his life.

Before we knew it we had arrived at the training facility and gathered together to train.

Throughout the day I had the opportunity to train with the participates. At times I joined the students and trained within the group this was enjoyable and at other times I assisted with the instruction of the students. We did a stretch and kicking drilling (Kyorugi) together. During the first training day I meet an olympic medalist, Tran Hieu Ngan the silver medalist at the 2000 Sydney Olympic games, she was extremely friendly and we hung out the rest of the week. I was also asked to speak with the press. This was quite the experience as I sat in a room with about ten reporters it was like I was having my own press conference. I was in awe about how my story had impacted so many people all over the world.

The following day we had the special lecture series and had the chance to experience Korean Traditional Culture.


Through the special lecture series I was given the chance to speak to the participates about my story. I was also able to inspire hope and enthusiasm in the youth. As speaker I always try to inspire my audience in finding their inner strength. I spoke about how we all have our own challenges and with those we are all here today. Taekwondo is a sport that gives opportunity to the many and what we learn in Taekwondo we can then take and apply to all the parts of our lives.

It really was an honor to speak at the camp. I feel that I made a difference in the lives of these youth. I hope the media coverage that occurred during my visit helps to inspire and reach many more in South Korea and all over the world.

After the lecture series we were given the chance to experience Korean traditional culture. We went to the cultural center and had a traditional meal. We also had a chance to learn about a traditional wedding and Korean drums. We also had a chance to visit a traditional village called Jeonju Hanok. I really enjoyed seeing this cultural side of South Korea. As we were leaving the village there was a presentation of the lion mask dance. This was great to watch as it included the drumming we were shown at the cultural center. 

The following day we returned to our training. In the morning there was Kyorugi training again and I took this time rest as we have had a busy schedule. In the afternoon we had Poomsae (Forms) training during this time I did a demonstration of a Poomsae to the group and joined the instruction. I really enjoyed the Poomsae part of the training. Unfortunately,  at the end of the Poomsae my knee gave out on me. This stopped me from being involved with the Kyukpa (breaking). We also took a trip to the construction site of Taekwondowon and it was amazing to the models and picture come alive.

In the evening our day of culture continued as we had a K-POP dance performance. Then the youth presented folk costumes and had a talent show from their native country. At the end we the demonstration of the flying pungdeung where we wrote our hopes and dreams and let them fly in the sky.

On our last full day we packed everything up and moved ourselves to Seoul. We were on our way to do a Poomsae and Kyukpa demonstration at the Olympic Park. When we arrived they gave me a new dobok with the sleeves removed. We did a short practice and then were given a break. Things were going well and then my knee gave out and I had lots of pain. It was so bad that I couldn’t bend my knee and barely walk. My friend Danielle was there for me and helped advocate for me. I had managed to do everything else was doing without problem but my body had hit its limit. However, within a few minutes a Mater from Spain was by my side and was massaging and using pressure to help my knee. I was given ice and told to sit. Within five minutes I was standing without pain and was able to join the demonstration of the Poomse.I was glad to be about to join the demonstration. However the knee pain did return and I had to rest at the hotel for the rest of the afternoon. It was not a decision that I like , but it was a needed and responsible one. Growing up with a disability I have learned the importance of having support and knowing when to stop. On this trip I had different support people but one stand out my friend Danielle. Danielle was there as a companion and gave so much support without question. She carry things for me so I would last longer and helped me with the smaller things that happen throughout the trip. It was her support that made a difference to me.

We ended the week with a final dinner. During this time I had the chance to talk with the youth from all the different countries. I found out that my story has been published in a magazine called I Love Taekwondo Global Magazine. I had an amazing time on my second trip to South Korea and I look forward to a chance to return again.

Adaptive Sports

For a number of years I have thought about getting a bike again. As a child I had a big wheel and loved it.  I rode it so much it literally fell apart one day. Since then I have not had a bike and have often wanted one. Over the years I looked into it and found it to be expensive and complicated which often lead me to find something else to do with my time. Well about two weeks ago I started looking into bikes again and came across new information and possibilities. On Friday I went to NH to a program called Northeast Passage to have a bike demo. I was going to be able to try various bikes and see which would really work for me. Very exciting.

I received more out of the appointment then I had imagined. When I first arrived I was brought into a huge room of bikes. I got to look through them and see what would work we settled on two possibilities. A trike bike and the banana peel bike. The trike bike we had to play with for a while to get things set at the right measurements. This had hand brakes and the steering were with my hands which I found to be difficult once they had me riding it.

Then we switched to the banana peel bike. This bike was amazing it was so easy to use the steering and peddling were controlled by the hips and legs. It felt so natural. I rode around the parking for a while and found that I was getting good at it pretty quick. The main drawback to this bike is that it is only a one speed. So if I really got into riding I may need something with more speed.

I had a lot of fun and got amazing information. I found that I could sign up with Spaulding Hospital to be involved with their adaptive cycling program and use the same banana peel bike. This would give be a chance to really try this bike out before buying it. Then I learned about other adaptive sports that Northeast Passage was involved with water-skiing, kayaking, golf, and shooting. I’m very exciting about all these possibilities for this summer. I am already signed up for cycling and water-skiing. I’m looking into kayaking and shooting. I love to try new thing!

Easter Seals-Ready, Set, Go!

Easter Seals Team Hoyt Rising Star Award is given to a person who shows determination to break down barriers facing people with disabilities. This year I had the honor to be presented with this award at the Ready, Set, Go event. The evening was wonderful. Barry Nolan was the Emcee. He had great remarks about Dick and Rick Hoyt. I only recently have learned about the Hoyt Team and was even more inspired by their story after hearing Barry. Then there was the unveiling of the Team Hoyt Portrait which was amazing. Later I was presented with the Rising Star Award. Kirk Joslin, Easter Seals, presented me with the award along with a few friends of mine. I have been a friend and mentor to the Perrino family as their son also has TARs. I was blown away by his remarks regarding my life. I have to say I was a bit teary eyed as I was given the award.

I was honored to receive this award. As I said that night I have spent my life just being me and never imagined that my life would inspire so many people. I spoke to the Ready, Set, Go audience the only way I could and that was from my heart. I told them how amazing my family and friends have always been to me and how they made difference in my life. I also told them about some of the amazing experiences that I have had working with Massachusetts Easter Seals.

My friend Remon Jourdan then read an original poem called “An Honorable Equation” which was an opening for the next award. EMC Corporation received the Team Hoyt Award because they have determination to break down barriers facing people with disabilities. As a corporation they are ensuring that people disabilities have equal opportunities to work.

The whole evening was awesome and I’m honored to have been a part of the Ready, Set, Go evening.

We are…

We are capable of success
Just give us a little support
We are able do things that seems impossible
Just share some of your ideas with us
We are passionate and have strength despite all odds
Just hold some positive space for us
We are hard workers and contribute to society
Just allow us the opportunity
We are determined independent people
Just give us a chance
We are loving and capable parents
Just offer us tools to improve
We are intelligent and healthy individuals
Just spent time with us you will see

How do I…

Over the last few years I have been asked over and over again how did you learn to do… I have decided to try to document some of the memories on how I learned to be the independent women that I am today. I don’t plan to account things in any particular order what ever comes to me that week will be the memory of the week.  Some stories that I plan to talk about are: learning to drive a car, tying my shoes, learning to dress myself, washing my own hair and laundry. If there are somethings you have questions about please post me. I’m sure there are many tasks that are there that I do differently than others and I’m happy to share.

Self Defense Class

I had the chance to enroll in a woman’s self-defense class this past weekend and I have to say it was an amazing experience. It was through a program called IMPACT in Malden mass. When I went into it I though this should be interesting and very similar to my martial arts training.  It was an intense class that gave me a reference point to what I could do to get away if I ever found myself in a threatening situation. It also taught me threat assessment because sometimes how you react to a particular situation at first can make a world of difference. The physical training was taught full-force in an adrenalized state it was done this way because it teaches you to react instantly and automatically.

At the end of the 20 hour training I had a stronger strength inside me that felt if I ever was in a threatening situation I had the tools to get myself to safety. I now have more awareness to my surroundings and skills that I  could use in an instant if needed. As a woman with a disability it is helpful to know what to do in a situation because unfortunately people with disabilities and women are often seen as easy targets. This program worked with all the women and all our differences. They helped use find what strengths we had that could be used in a threatening situation.

I so recommend this program.

Easter Seals- Youth Leadership Conference

An invitation to the Easters Seals Walkathon connected me to their Youth Leadership Conference. I had an audience of about 40 youth with physical disabilities and my topic for the day was Self Advocacy. Presenting to this group was amazing they had hope, energy, and inspiration. I was able to connect with them on many different levels. Most importantly I was able to show them through my life experiences that they could do anything that they put their minds.

Through an evaluation I asked the students what did you learn from this presentation?

“I learned to keep going regardless of what anyone says” (John 20)

“That it doesn’t matter what your disability is you can do anything you put your mind too” (Samantha 17)

“To stand up for your rights (against discrimination) no matter what” (Dominic 17)

“I will remember to fight and never let anyone walk over me” (Melissa 17)

I will remember how excited and inactive the youth were throughout the presentation. I could tell right away that I was making a difference in their lives. One student told me that they will most remember :my positive outlook, my never give up attitude and how it was contagious throughout the whole audience”. (Gabe 23)   

Interesting discussion

While having dinner with the youth I was asked how do you deal with being stared at all the time? I began in explaining that it depends on if it is a child or adult and what I might perceive their age to be. Then there is factoring how that staring makes me feel in the moment. The young child maybe 7 and younger is usually just curious and is trying to understand what is different about you. I will often will smile, wave or say hello. That is usually enough to have the child to see you as a person and they move on.  After the age of 7 the staring is usually is cruel and they are just making fun of you. The thing to remember is that they are the ones who have the issue not you. For some reason they feel that they have the right to put their issues on you and making fun of you is good. Well, it is good until you call them on it. I will walk up to people and tell to stop staring, tell them what they are doing is wrong, ask them if they would like to be stared at or just stare back. When you do these things it changes the power in the situation you gain your power and they become uncomfortable.  When I was a kid I would fun with the kids when they laughed at me and they stopped pretty quick and I use to tell adults that I was sorry they had such a small brain.