Faye Simon: Gianna, thank you for sharing your story.
Gianna Rojas: I want to share everything. I don’t want to keep it. I can’t take it with me. It’s not going to do anybody any justice.
FS: Please tell us about yourself.
GR: My mother took a pill called Thalidomide, which was given to pregnant women for morning sickness in the late fifties, early sixties. I was born a year before President Kennedy told all women to get rid of it. If you took the pill, it did its job wonderfully, but it didn’t do so well with the fetuses. A lot of the fetuses did not even have a chance. Although there were many babies that were lucky enough to be born, many had internal challenges that they have to deal with, and some were limb deficient. I have both.
People ask me if my siblings have anything. No, they don’t. I am the oldest in the family. It was the pill, not something that gets passed down or is genetic. When I found out I was pregnant, I got chromosomal and genetic testing done, to see if I could pass it on, just to know what to expect. Everything was fine. It’s not something that can be passed down. There are other reasons for all kinds of things, sure. But that particular pill did wreak havoc.
My dad was in the Navy. Growing up like many other military families, mine moved and changed schools every couple of years – which meant I was regularly the new kid. Like every new kid, I had to build rapport again. The only trouble with being the new kid for me was that I was visibly different. I was born with no fingers on my left hand.
As a child, I had to learn early on how to break the ice with people to make them comfortable with me. As soon as I did, we would move again, and I would have to start all over. I’ve faced more than my fair share of being picked on, left out and bullied. I was even locked in a locker in middle school for three hours until someone finally heard me. Even at the bus stop and at the playground, boys and girls would push me down, my glasses would fall off, and I couldn’t find them.
When I was growing up, there was no term for it. Now we call it “bullying.” There was no “anti bullying” in school when I was a child. Some of the schools I went to were Catholic schools. So, you know, nice in the classroom, not so nice out of the classroom. I remember even up until the 12th grade, the girls were still pulling my hair and kicking my chair. The same girls would ask me to hang out with them when nobody else was around.
I was consistently thrown around in the cycle: building rapport, moving, getting bullied. We moved up and down the East Coast. We came to NJ when I was in the 9th grade. I stayed in NJ when I was old enough to “jump ship.” It is not easy when you’re a child and you’re that kid that’s not getting invited, and is getting picked on, or feels the vibrations of people around you that are uncomfortable. I had a rough childhood, I’ll put it that way.
FS: When you were beat up and bullied did anyone help?
GR: Only when it got too far out of hand. I didn’t complain a lot or it would get me beat up more.
FS: Did you have friends who stuck up for you when you were bullied?
GR: I had “friends” who would only be my friend when we were not around other people. I had no real girlfriends. I had a first boyfriend who only would be my boyfriend during spring break and not when we went back to school. But I did have a boyfriend in high school that did not mind what everyone else said.
FS: Do you have any advice for kids being bullied and/or parents whose kid is being bullied?
GR: That’s where using a tool, like an activity is helpful. My hope is that I get to talk to that 13-year-old girl, that was me, and find her some way to be able to get out and find something she’s confident in, whether it’s golf, or any other sport. I think sports are the perfect thing, to be able to say, “Not today, bully. I’m going to go play golf. You go pick on somebody else” and not have that be something that leaves a mark on you.
I think that it’s so much better for kids now than it was when I was growing up, because it’s not cool to pick on the kid that has challenges anymore. We’re not scapegoats anymore. What I believe is the biggest barrier, and sets up what I consider “conditional bias,” is that we were always taught and people still teach their children “Don’t look, don’t stare, don’t ask questions. It would be rude.” But that makes me invisible and the bias continues, because the questions aren’t answered. I believe the stigma is not out of ill intention. I just think disabilities are misunderstood.
FS: What is your experience with people, now that you are not a child?
GR: As I mentioned, “Don’t look, don’t stare, don’t ask questions – that would be rude” is taught with the best of intentions. With someone like me with a visible difference, even as an adult, it makes me feel invisible.
An example, is the story of a boy in a clothing store, who popped out from behind a clothing rack and saw my hand. I remember him going to his mommy “Mommy she has a funny hand.” Mom said “That is not nice” and walked away, not even acknowledging me. Like many people with disabilities, when you don’t interact, don’t engage or acknowledge them… it is like we are invisible. So, I was invisible and he didn’t get his questions answered. He probably had no idea what this was all about (Gianna pointed to her hand).
If I had had the opportunity with him, had his mother looked up and acknowledged me, I would have said, “He hasn’t met my little buddy.” I would say to the little boy, while showing my hand, “This is my buddy. Doesn’t a buddy help you do everything? Well, he helps me get dressed. He helps me tie my shoes. He’s real soft like a pillow. When I watch TV, sometimes I’ll lay on him. His name is Charlie, but he’s afraid you won’t like him. He’s really shy.” I would cover my hand and tell him to say, “Come out, Charlie.” I would have him say it a few times, until I could see he was comfortable. Then I would say, “Oh, there he is.” I made it a he because I’m a she, and they are not afraid of me. They can be afraid of Charlie. That’s fine. But that separates me from what they are afraid of – my hand. It doesn’t define me. So, they’re not afraid to come near me. They just don’t understand.
I find the opportunity to engage, to start the conversation. Because, and I’ve been telling this to my own people that all have disabilities, it’s our job to break the ice now. And it’s okay to break the ice now. If it is an adult that I notice staring or uncomfortable, I might say “I see you are curious. Would you like me to tell you about it?” So, I have engaged. I’ve started the conversation. If I start the conversation, it opens up the discussion, and helps those wondering, “What do I do? Should I ask? Should I not ask”? People don’t know how to talk to you. They don’t know what you’re thinking. They don’t know what to do. They haven’t experienced it. It doesn’t even have to be spoken, they are just uncomfortable and they don’t know how to deal with something different. “What do I call you? Do I call you disabled? Are you going to get offended?” Labels are a big barrier. That’s why I like the Exceptional Parent title, it struck me. I think exceptional is a good word when it’s used in the right context. Disabled is the right word when it’s used in the right context. I love differently-abled, because it’s just different. I’m going to do it differently. Every person, even if they have a disability, has some ability. It took me a whole lifetime to be able to say this.
I believe that the next generation, hopefully, is going to be even better than the last generation about accepting people with differences, because of all that we’re doing, the exposure, the talking about it, making it okay.
FS: Do you find that most people with challenges want people to ask what happened?
GR: It depends on where they are in their journey. If early on, if it is an illness or an injury, they often do not want to go back and relive the trauma.
FS: How do you advise people whether to ask or not?
GR: Take a step back and use your better judgement. Don’t do it in a way that is offensive or degrading. Each situation is different. Remember they are people and talk to them like any other person. You can leave it up to the person to share. If you are not going to connect with the person, do not just stare. Staring is rude. Either connect or move on, we do not want gawking. If you cannot just say hello like you would to someone without a disability, then just move on. There is no one right or wrong way. Everyone is different in their journeys. I would like society to know it is okay to politely sat “I noticed you only have one leg. Do you mind if I ask what happened?”
FS: How do you feel about people asking to help you, when they notice your hand?
GR: There’s a raw nerve that has been poked my whole life. So, when something like that does happen, sometimes it’s a little bit of a trigger. It’s not a negative, I have to remind myself sometimes. People generally are compassionate and empathetic. We’re taught that we should help when we can. But the misconception, and where sometimes people like myself may take it even more negatively than intended, is because we in our minds automatically think, “You think I can’t do it? You want to take it away from me while I’m doing it and do it for me because you think I can’t do it?” Then you’re not giving me the opportunity. However, it is ok when somebody comes up and says, “Hey, can I give you a hand with that?” But I usually prefer to do it myself, because I have my own system. For me, it may be a little different than for others who became disabled, because I was born with it. It feels natural to do things myself. I don’t know any different way. I have to remind myself that people want to help and it is a gift to them to let them help me. However, my husband will stand back and watch, because he knows, I don’t need any help, nor want it. If I need it, I’ll ask for it.
FS: What advice do you have for people wanting to help?
GR: When you really want to jump up and help somebody in a wheelchair open a door, take a breath. Just take a moment and see if they really need your help. We have worked very hard for our own independence. I do not like when someone says, “Here give me that, I’ll do it.” You can ask “May I help you?” It gives us the option of saying “No, thank you for your offer,” just like anybody else would without a disability. But you have to ask politely and take no for an answer. Do not assume automatically that they need your help. I am teaching those with a challenge that they should try to take responsibility to ask for help, when needed.
FS: Tell us about your adult life and how you got into golf.
GR: I was living on my own when I met my husband while I was bartending. He came in with his friends after work. I said something stupid about football. He is a Dolphins fan, I’m a Jets fan and they’re usually archrivals. I said something backwards, and he thought it was cute. He invited me to a football game. From then on, we dated seriously and then got married. We have been married 36 years, have two children and three grandchildren. I can honestly say that I am absolutely adorably in love with him and nothing turns my head or my heart, no matter what I do, even though, I’m around men all the time.
As an adult, I began to get that feeling of being left out again. I was feeling like that 13-year-old girl again. My husband, his friends and their wives would meet most weekends to play golf. Also, all these years, the couples were playing golf with my husband, but he doesn’t have his wife with him. They were nice enough to call me when they rounded the 15th hole to join them for lunch. Just like all golfers do, they would sit and talk about their morning round. I found myself not having much to add to the conversation. I was happy to be there, but I didn’t have much to contribute. Sometimes, they would go back out, and I would go back home by myself. Finally, I had enough of that.
I asked my husband. “How can we figure this out?” I was born this way and I’ve always learned everything a different way. It was a lot of trial and error. I decided to start hanging out at the driving range, but we just couldn’t figure anything out. We talked to different teaching professionals that were my husband’s mentors golf coaches. But nobody had been trained to teach somebody with one hand. I was advised to come to the beginners’ clinics, which I did. The first thing they teach you is “One hand goes here. The other hand goes here for gripping,” and they’ve lost me. The teacher said “Let’s come back after the clinic and we’ll try to figure something out together, because it’s not something that we’re going to figure out with the group here.” I agreed and also felt that it was not fair for the group to wait for me. So, we would go back after the clinic and talk. We tried a bunch of different things. I tried lefty, I tried righty, I tried a prosthetic. But because my arm developed differently, the lengths are different. We tried some prosthetic devices, and all kinds of crazy gadgets, but I was never able to keep two points of contact on the club. In golf, they always teach two points of contact on the club, which is why you’ll see people with amputations wear prosthetic arms. But it wasn’t working for me. So, since I couldn’t use a prosthetic, we just started with the one hand. We tried lefty clubs, we tried righty clubs, and it took probably about three years of just chipping away at it, no pun intended.
FS: What advice do you have for parents that have children with disabilities?
GR: Parents often have limiting beliefs about their own children’s abilities. Because of that, they often do not take a step back, because they want to make sure everything is easier for their children. In spite of their best intentions, the coddling robs the children of their independence.
As a child, I was held back and being limited. There was a lack of exposure, because my parents did not put me out there. I didn’t get offered the opportunity to play sports. I didn’t get pushed to go to dance class or gymnastics. I didn’t get that because they thought I could not do it. Don’t keep them in. Push them out. Step back. As a parent, you want to empower your children. Your job is to empower them, to bring out their individuality, and help them shape it, as different as it may be, for whatever the unique child is. And that’s not just a disabled child, that’s any child. It is important that parents do not limit and hold kids back. Don’t balk at putting them in softball. If they don’t like it, they don’t like it. If they’re not good at it, they’re not good at it. But give them every opportunity. You should treat your child as any other child. Who would have thought I would be playing golf? Allow your child to explore. Don’t just do everything for them.
Some parents, even though the child could communicate with me, communicated for them. An example, I was talking directly to the son and the mother answered for him. You can’t do it all for them. You wouldn’t think of people with mobility challenges going to CrossFit. The first thing they do at CrossFit, is the teacher will come and push the amputee out of his wheelchair. “The first thing you need to know is how to get yourself back up in that chair. If you can’t, we’re going to build your strength. That’s going to be your first goal, getting yourself off the floor back into that chair.” That’s the first CrossFit exercise so they can be independent. So, the more we pick them up and put them in the wheelchair, the more they’re not going to be able to do that themselves.
FS: How did you get the idea to create Adaptive Golfers?
GR: I’ve got to step back in my story. I was the state of Florida’s poster child for the March of Dimes from 1972 to 1976. The national poster child came to Florida for a photo shoot with a known celebrity. They were still coming out of the polio stage and into more awareness about birth defects. The vaccine was out and it was helping get rid of the polio virus. A neighbor told my mom about the photo shoot, and my parents brought me down. During the photo shoot, a man walks in the room and my dad turned white. I had no idea who the man was. I knew my dad played golf, as he sometimes went on the weekends to play, but I didn’t know what golf was. I was sitting on this man’s lap in a photo shoot, with the national poster child. Turns out it was Arnold Palmer. Arnold Palmer’s father had polio. Throughout his whole career, Arnold Palmer was a huge supporter of the March of Dimes.
Now going forward to me as an adult. A friend of my husband at the golf club where I had begun to play golf, introduced me to the chairperson for the March of Dimes walk, up in Sussex County. After I helped out as a volunteer, I said, “I wouldn’t mind getting reconnected with the March of Dimes, if you need some help with calls or something.” Then an internship became available and my friend talked me into accepting the internship. Then they offered me a position, as a Community Director, and I worked for the March of Dimes for six and a half years. I ran the walk at Liberty State Park and I built awareness for the March of Dimes.
So, after six and a half years of running the walk at Liberty State Park, a huge, high-profile walk, I got a phone call and was told that the March of Dimes was laying off 150 positions. They took the county walks and combined them into regional walks and got rid of all the county community directors. After this phone call, my friend and I were sitting in a diner, when she said to me, “You know, Jeanie, you’ve got something here with this golf.” I was using my ability to play golf to draw attention to my birth defects, to be able to start the conversation. All the research I did was going to be a resource, because throughout my journey trying to find out how to play golf, there was no one out there that said, “Hey, one-handed lady, I can teach you to play golf and here’s the kind of equipment you need.” I started forging relationships and I got involved with organizations, just as an ambassador. I didn’t fit into any of the categories. I’m saying that because there’s PGA Hope and the Veterans Golf Association, which, even though I’m “guilty by association” as a military Navy brat (my brother, step brothers and nephews are Navy) and I’ve been brought up in military life, which I fit well in, I’m not actually a veteran. Then there is the One Arm Golfer’s Association. I have two arms. I only have one hand.
So, I continued to forge relationships and got to know amazing organizations. My friend said, “Why don’t you look and see what URLs are available?” I typed in adaptive golf and that was taken. Since, I’m the golfer, we came up with Adaptive Golfers. Now I am a world ranked adaptive golf player and I’m on the US disabled golf team.
My sole purpose and mission, no matter how much I’m doing outside of all of this, is to get the stuff that I didn’t know that was even out there, for the golfers who need it. But we don’t have an industry ready for us, so I can hoot and holler and get all these people turned on to golf that have all these different abilities, but the golf industry has no idea what to do with us when we get there. I’ve become an advocate, ambassador and an educator in that arena. It’s not just me, there have been pioneers preaching to the golf industry for decades. There’s so much research and stuff that was never acknowledged. I have somehow been blessed with the opportunity and the voice, to be able to be the concierge between the industries, not just the golf industry, but the allied health and rehabilitative industries.
FS: Tell us about Adaptive Golfers
GR: I founded Adaptive Golfers after experiencing, personally, the difficulty in finding instructors and resources to allow me to play golf.
When I began to notice that I was missing out from joining my husband, his friends and friends’ wives, on their rounds of golf, I realized it was time to start doing something rather than watching from the sidelines. During my quest to find an adaptive way to learn to play golf, I learned how limited options were for golfers with different needs. I soon began forging relationships with leading experts and product manufacturers and decided to create Adaptive Golfers, an in-person and online space, where those with different abilities can find programs and events, using modified clubs and equipment, that fit the space I struggled to find early on, in my own golf journey. I am the self-proclaimed “One-Handed Lady Golfer.”
I want to make it possible for children and adults with disabilities to learn or return to golf. I want that little girl, that was me, to be able to say, “Not today, bully, I’m going to go play golf. Go pick on somebody else.”
Despite the more than 61 million individuals living with physical, cognitive, sensory, health, and age-related handicaps in the United States, those with different needs have incredibly limited access to the resources they need in order to pursue golf.
While some technologies and programs do exist, most are inaccessible to those who need it the most, or they serve as one-size-fits-all solutions, attempting to address a community where no two individuals are alike.
Through Adaptive Golfers, the mission is to re-imagine golf to allow any and everyone to discover the incredible benefits the game has to offer. Today, Adaptive Golfers hosts accessible golf clinics across the country, as well as training for golf instructors and course operators interested in better equipping their facilities to support golfers of all different abilities. People with disabilities have an even greater chance of reaping the rewards golf brings. The reason: People with disabilities spend far less time outside the home socializing. They tend to feel more isolated and participate in fewer communal activities. Besides the apparent physical benefit of Adaptive Golf, the impact on their self-identity is profound. Golf has proven to be an incredibly effective medium, and when some level of mastery is achieved, its powerful medicine. Adaptive Golfers helps to create a sense of camaraderie and inclusiveness, providing encouragement and support to help re-build an individual’s sense of dignity and self-esteem. Wellbeing is critical for humans. For those with adaptive needs, we feel “well” when we gain a sense of control over the consequences of our disability.
Through the benevolence and the generosity of others and funding from the Make Golf Your Thing Grassroots Grant Program, Adaptive Golfers can offer programs and clinics to children with physical or cognitive challenges, young girls and women with disabilities, wounded veterans, first responders, and individuals who have suffered strokes, heart attacks, TBI, loss of limbs, etc. “Neither the ball nor the hole care if you roll it with your nose.” Therefore, instead of disabilities, I prefer to say “different abilities.”
Through the educational programs, Adaptive Golfers provides education to golf courses and facilities, instructors, parks and recreation, schools, and allied health and rehabilitative industries to bridge the knowledge gap on golf as a therapeutic activity.
There are experienced instructors, manufacturers, and organizations working day in and day out to help adaptive golfers discover the wonders and therapeutic values of the game.
I believe in the words attributed to John F. Kennedy: “One person can make a difference, and everyone should try,” and I live my life accordingly. I recognized that what was lacking for individuals like myself was a voice. So, I decided to use my voice to advocate globally for adaptive golf. I am passionate about bringing attention to the success stories of Adaptive Golfers and share my own story in the hopes of inspiring others who may question their own abilities. This is all heart. My purpose isn’t for my handicap or my score, or for me to have bragging rights and trophies. My purpose is that 13-year-old girl who needs to see somebody like her out there doing something that she would like to do and think, “Wow, if she can, maybe I can, too.” I am trying to leave some sort of legacy when I’m not here any longer, that maybe I’ve changed somebody’s life.
FS: Share an example of one of your many touching stories.
GR: I had a booth at an expo. A man who had a stroke three years ago could barely move. He used to play golf. He just happened to be passing by. When he saw the word “golf” at my table, he moved his head slightly and his wife asked if he wanted to go over and meet me. I started talking to him. I said that the best thing is for me to get connected with his rehabilitation team and have them use golf motions as a therapeutic activity. Just small motions: moving one arm, throwing a ball from the bed to the garbage can. This big strong (in persona) man was bawling saying, “Thank you thank you.” I hugged him and he would not let go of me, saying in my ear, “Thank you, thank you.” Giving him a little glimmer of hope that he can get back to golf, in some form or another, really helped.
And I can tell you, when you’re standing, hugging and crying, the impact is heartwarming. I am confident in saying that we change so many people’s lives. One little chance meeting and giving him a little glimmer of hope that he can get back to golf, in some form or another, is what this is all about. Every experience like this gives me back a little piece of my heart that was taken from me growing up.
FS: This is really wonderful and I’m so glad that we’re doing this article. You’re doing such wonderful things and making a big difference. You’re truly an inspiration. I’m thrilled the magazine is able to give you more exposure, so even more people can be inspired by you.
GR: I love EP Magazine. It makes a big impact. You are giving the audience – parents, caretakers, individuals with disabilities – a tool.
FS: What advice would you give others with a disability?
GR: Don’t say “Can I?” Say “How can I?” “How can I?” gives you that opportunity for trial and error. If you say, “Can I?” You might try it once, then say, “See, I told you I can’t.” “How” makes you want to keep trying until you get to that outcome of what you want, whatever it is, whether it’s golf or anything else.
For more information about Gianna Rojas and Adaptive Golfers, please visit www.adaptivegolfers.org
Read the article here.