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.
At a very young age I was giving a tool that was the beginning of myself independence it was my hook my parents understood the importance of me becoming very independent and they decided they would take a broom and cut it down which ended up being about 21 inches and they took a metal hanger and they cut it down formed it into a hook and then put it into the end of the stick that is what became what I call my hook and later many of my doctors and therapists called my dressing stick it was not always easy to use my hook nor did I always want to use my hook. No one was able to truly teach me how to use my hook because their theories didn’t always work for my reality . Therefore I needed to figure it out on my own and that took time I struggled at first because I needed to figure out how to make this hook help me be able to pull up my pants. It didn’t always work when I slid into the lining of the pants I needed to roll it sometimes or not just use my hand when holding the hook with time I realized it was a combination of my hand and my chin and figuring out where just right was when trying to dress.
As much as my hook gave me independent . It also required me to rely on it and I didn’t always like that I remember when I was a kid deciding that I was going to figure out how to put my pajama pants on without my hook. I was on the floor in the back bedroom of my grandparents house and I decided that I can reach or maybe I could wiggle and somehow this would work. It did work it took a lot of effort and I think I gave myself a pulled muscle here and there but I succeeded in being able to pull up the pajamas pants by being very flexible and wiggling. That success made me feel so good because I realized that there were times that I could do something without my hook and that mattered a lot to me. As my preteen years came and I started really not liking my Hook and it came to the point that I stopped just hiding my hook when I have to go to the restroom at school to just deciding that I didn’t need to go to the bathroom until I got home. The thing that really made me ask my parents to do something different with my hook was sleepovers I was at the age where sleepovers were important. I used to go to the YWCA as the time and they were doing different sleepovers and now there was no way to not go to the bathroom anywhere but home and I decided that I needed a travel hook because this hook didn’t fit in my backpack at least that’s what I told my parents.
I remember the two trial hooks. The first one looks just like a ruler. It was flat and it folded up which I thought would be perfect. Unfortunately when I took it to the sleep over and tried to use it is extremely difficult and I needed to ask for some help which is really embarrassing I learned that was important to make sure that it works just right before leaving the house. The second hook was made of metal and had a spring in it. The idea was that you pushed down it to made it longer and pushed down on it to close it down. In theory it was great in practice not so good. When I went to use it I pushed down on it a bit hard and before I knew it the spring sprung out of the metal and I jumped under the bed. Back to the drawing board my dad went and the third one was prefect.
The hook I use today is a cylinder made of aluminum which is collapsible into three sizes 7, 14,or 21 inches. It fits in my purse very easily and is very light. Through the years I have grown to accept my hook as an extension of me. I’m no longer embarrassed by my hook nor do I try to hide it when I have to use the restroom in a public place. My hook has given me independence that would never have been possible without it. Now when someone sees my hook I’m open to questions and see it as an opportunity to educate another about disability.
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
For the first 20 years of my life I knew of only three other people with TARs, I was told one boy was six months younger, the other boy was six months older and then there was the young man who was 18 years older than me. I have one memory of speaking with Andy, the young man, on the phone I remember him telling me that he drove a car and flew a plane. My parents had met him once at Shriner’s Hospital when I was only a few years old. The brief moments of connect that Andy had with my family and I had more impact then he may of ever known. First he gave my parents hope that I would become independent some day. He was also living proof that you could grow up with TARs and be healthy and happy. I also recently learned that his dressing sticks gave my parents the idea of creating my hook a.k.a. dress stick. Mine would develop into something much different but it gave me the independence that he had in his life. Our conversation on the phone made me realize that I was not alone in the world. Someone else was out there that understood what I was going through in my life. While in college I meet a woman with TARs for the first time and I learned that there was long arm TARs and short arm TARs. Unfortunately, our only common thread was TARs and did not become very close friends in the end.
A number of years later Shriner’s Hospital took me up on my offer that if there was anyway that I could help please call me. There was a family with a two-year old boy with short arm TARs and they wanted to talk with another with TARs or others who understood TARs a bit more than them. I told the hospital that I would be happy to talk with them please give them my number. I waited for their call. Our first call lasted hours. She had so many questions about how I had learned to do things, how my parent dealt with having a child with a disability, and what was my medical history was like. It was exciting to think that my own life experience could help this family in a real positive way. I realized later that I was the hope for this family that Andy had been for mine. We had a number of conversations after that and then we decided to meet.
Meeting young Michael was exciting and difficult all at the same time. When they all first arrived Michael was brought into my apartment and they ran back to car for a moment. I remember seeing him sitting there on the floor and for a brief moment my childhood flashed in front of my eyes I was sad for him because I knew what kinds of physical and emotional pain was yet to come. Quickly, every else was in the house and the fun began. I got to watch Michael do things in his own way which was amazing to watch. It gave me a peek into what my childhood may have been like from the other side. This new friendship gave me a new understanding to what my parent did for me and how hard it must have been for them. Over the last few years we have continued to be friends talking on the phone and visiting. Michael has had surgeries now that give him the hope of walking on his own some day.
The internet has been an amazing tools to interact with other people who have TARs. At this point in my life I have met, spoken to, and emailed many people with TARs and some of their family. My story is online and it has begun to give hope to more than one family. I have had the chance to met others and support them in their independence. That story is for another day.