Gianna Rojas golfing

Life throws us all curveballs and we learn to adjust to them. Sometimes those obstacles are tough to overcome and the path to the other side may be bumpy, but we get there nonetheless.

For me, the curveball came at me the moment I was born. Having been born without fingers on my left hand, I have learned to handle physical challenges as mundane as brushing my teeth and preparing meals to more complicated tasks, such as changing my squirmy daughters’ diapers, driving a car and typing. The physical challenges, I’ve got those down. And the older and wiser I become, I’m good with the emotional obstacles, too.

My confidence regarding my disability has been tested countless times. Growing up, our family moved around every few years due to my father’s position with the Navy. This meant that from a young age I had to learn how to build rapport and develop new friendships very quickly.

The constant moving was especially difficult for me because being the new kid made me a target — and having only one hand often made me an even bigger target. I was bullied, and once, I was pushed into my school locker and trapped there for three hours. I had no choice but to accept my physical differences, and eventually I looked upon my hand as something special and unique, not ugly and odd. These childhood memories are never forgotten; however, they helped shape my character and fueled my desire to help those who face similar challenges.

As a child, I was selected to be a March of Dimes poster child where my role was to help raise awareness and funds for research aimed at preventing birth defects. Although only a child, I was proud of my responsibilities. Eventually, we moved cities and my commitment to the March of Dimes ended.

After getting married and having children, I learned to adapt to whatever motherhood threw at me. I cared for our daughters, showed them and their friends that my hand was not going to limit me, and years later, I taught myself to knit and crochet sweaters for my grandchildren by watching instructional videos and adapting to my situation.

I’ve always enjoyed sports, but tended to engage in activities that didn’t require I use both hands — until my husband, Ray, encouraged me to join him on the golf course. I searched for resources that provided special instruction and equipment that would accommodate me but found very little. I attended a few clinics, watched how the instructors taught golf fundamentals, such as grip, stance and swing, and once again, I adapted until something clicked for me. 

My love for golf has deepened (I’m known by many as the “one-handed lady golfer”), and I recently founded Adaptive Golfers, a non-profit organization that brings the game of golf to people with different abilities. In addition, I volunteer as a course marshal at The Barclays, a world-class PGA Tour tournament, which rotates courses in the greater metropolitan New York/New Jersey area each year.

When I learned about the PGA Tour Volunteer Challenge, which honors volunteers and supports charity, I jumped at the chance to participate.

The Volunteer Challenge is a friendly competition designed to raise funds for non-profit organizations while recognizing the talent, passion and commitment of PGA Tour tournament volunteers in communities nationwide. 

Please consider voting for me now by selecting my name from The Barclays volunteer list. When voting ends on August 27, the tournament volunteer with the most votes will earn the opportunity to present a $10,000 check to The First Tee of Metropolitan New York. In addition, $5,000 will be donated to the winner’s charity of choice. If I win, I will designate the funds to March of Dimes, as I am the community director for one of the New Jersey chapters (funny how decades after being a poster child, I have been brought back into the fold of this important organization.)

Resilience and perseverance have always been at the center of my being. Whether it was facing 10-year-old bullies, struggling with knitting needles or being baffled by a golf club, I knew that although physically disabled, I was able to do what I set out to do. 

Today, the curveballs that come my way tend to be little white dimpled balls, and I’m prepared to take them on.


Update: Previous versions of this article referred to the company as Box Full of Spoons. The name pays homage to Christine Miserandino’s “Spoon Theory,” which is based on a conversation Miserandino had with a friend. In their conversation, Miserandino used spoons to explain the limited energy reserve (spoons) of people living with chronic illnesses. The theory took off and created a community of “spoonies,” of which Godley, is an active member.

As of 8/18/16, the name of the company has been changed to ChronicALLY Box. According to Godley, “We wanted theme of the box to clarify who the box supports. With the new name, it is clear that the box is for women who suffer with chronic illnesses, without much explanation. The target and mission is still the same, and we believe the rebranding will reach more chronic illness suffers in the long run to bring products that will be their allies for all things health, beauty, and pick me up!” 

The company is also offering a smaller version of the box, the ChronicALLY Treat Box, for $27.95.

Ally Godley was tired of the medical bills and test results that regularly flooded her mailbox, so she created ChronicALLY Box – the first subscription box for people living with chronic illnesses.

Godley, 27, lives with multiple chronic illnesses including irritable bowel syndrome (IBS) hypothyroidism; polycystic ovarian syndrome (PCOS); generalized anxiety disorder and chronic fatigue syndrome, and understands the challenges people living with chronic illnesses face. Her company’s subscription box, which launches in August, is designed to make the beauty and health routines of women with chronic illnesses easier.

“The products are meant to save you energy on health and beauty tasks that can be tiring,” Godley told The Mighty. “For example, dry shampoo delivered to your doorstep, so you don’t have to wash your hair as often. You also save energy by not having to make a trip to the mall.”

Inside a Box Full of Spoons

While this is the first box for people with chronic illnesses, there are other boxes on the market that cater to different health issues, including a subscription service for people with cancer, and those facing depression. ChronicALLY Box, is similar to other subscription boxes in that it ships once a month and contains between four and six full size products. A subscription costs $43.95 per month and ships worldwide. Godley is also developing a smaller, less expensive box. To give back to the community, ChronicALLY Box will be donating a percentage of all proceeds to nonprofits related to chronic illness.

Godley hopes ChronicALLY Box will lift the spirits of subscribers. “I wish people understood that living with a chronic illness is an everyday battle,” she said. “Not only physically, but also mentally and emotionally.”


Dear professors,

I enjoy learning a lot and am grateful for you taking the time to expand my knowledge. I want to be successful and am sure you want your students to succeed as well. I’m not a “normal” student though. You probably received the e-mail from the campus disability office about my accommodations. Yes, I am allowed extra time on tests, absence leniency, and the ability to leave the classroom during class. There are some things I can’t get accommodations for that I want you to know about too.

There are times when I can type and take notes fine. This is rare though. Most of the time I have a finger or knuckle dislocated and both activities are excruciating. This won’t be visible to you and I might not tell you because it happens so often. I often don’t know until the middle of class. If I suddenly stop taking notes, don’t freak out and assume I’m not listening. Chances are, I have turned on the dictation program on my computer to type for me.

I may show up to class in a brace or on crutches. This means I dislocated something — probably doing something that wouldn’t hurt a healthy person. I would prefer to not give you the whole story. I have been ridiculed enough for breaking my hand in yoga and playing charades. Just trust that if my injury will affect my work, I will talk to you myself about accommodations.

Sometimes I have barely dragged myself out of bed to be in class. I will not look my best on these days and will probably answer questions wrong if called on, due to this awful thing called brain fog. If I look like a zombie, please don’t call on me that day.

I am pretty good about communicating when I can’t be in class. There are times though where I might not get the chance to shoot an e-mail or make a phone call. I am not being disrespectful. I was probably rushed off to the OR for a procedure and they frown on taking phones into a sterile environment. The minute I can, you will hear from me.

When I do have an absence and a doctor’s note excusing me, please don’t ask for more details. If I feel like sharing why I was gone, I will. Some things are just too personal, especially if you are a professor of the opposite sex.

Lastly, you are privy to the information that I am ill. It is not something that I want broadcasted to all of my other classmates or professors. If I feel like sharing with them I will, but please do not expect me to share my experiences in class or assume other people know. I have to trust you with this information to be successful in your class. I know I am not your average student, but that doesn’t mean I am not trying my best to appear to be to everyone else.

I am a person first, a patient second.

I did not choose to be different, it just happened to be the hand I was dealt. Please respect my privacy and contact me directly for questions. Like every other student, I just want to do my best in your class.


Your Chronically Ill Student

I am a very kind, understanding person most of the time. But lately, quite a few frustrations have been building up inside of me, mostly about how people treat me differently because of my chronic illnesses and some of my struggles.

It’s usually just a short phrase – an interruption – someone quickly talking for me or even over me. Sometimes it’s a slight scolding, someone telling me what I need to do or shouldn’t do.

I tend to let most of these annoyances or frustrations slide, outwardly. I stay silent because I don’t want to make a scene. I don’t want to be seen as over-sensitive. I also don’t want my concerns to be perceived as an attack on someone just because they didn’t happen to know something. And of course, I don’t want to be the “PC Police,” zipping about with sirens blaring.

But man, some of these things are really starting to get under my skin. I know they also tend to bother many other people with disabilities, so I figured it’s time to get my three biggest frustrations out there, along with an explanation of why they anger, annoy, or hurt me.

1) When I’m having a conversation with a group of people and someone randomly shares tidbits of information about my abilities without my consent.

Let me give you a few real-life examples. We’re talking about cars, and someone says, “Oh it’s simple, just shift it quickly into reverse, and then…” I’m listening and interested in the conversation, but then someone else jumps in and says, sometimes in a hushed voice, “Oh… but she can’t drive.”

Why did they have to do that? If someone had said, “I was thinking about having Michelle pick me up at 8,” it might be appropriate to offer up that information, but in this context it’s not necessary. It didn’t add anything to the conversation. It actually interrupted the flow a bit, taking the spotlight
off the person speaking and pointing it at me and one more thing I can’t do.

Once, during a conversation about food choppers in industrial kitchens, I didn’t have much to say on that topic since I’ve never worked in one. However, I do use a small chopper and slicer in my own kitchen, so I inserted my thoughts on those. Once again, someone had to come to my defense and say, “Well she can’t physically chop vegetables herself with a knife.”

That wasn’t a piece of information I was going to offer up in that instant. I didn’t really want to
change the conversation to be about me; I was just trying to find a way to add my voice. And the thing is, I technically can chop vegetables with a knife, it’s just very hard, painful, rather dangerous, and yes, there are definitely days and moments when I cannot physically do it.

These might seem like really small things that shouldn’t get under my skin, but I don’t like constantly being reminded that I’m different than others, or that I can’t do certain things. I also don’t think letting people know this information will help them understand me better or make the conversation
go more smoothly. Sometimes it just creates awkwardness, and makes it seem like I can’t really speak for myself.

2) When people talk about me like I’m not actually there.  This happened to me just last month, while I was in the security line at the airport. I was using a wheelchair and my sister was
pushing it for me. We made it to the little conveyor belt and started removing our shoes, belts, and all the other things required by TSA.

A stranger came up and asked, “Hey, is it OK if I cut in front of her? I have a flight that leaves in 20 minutes and I have to rush through the airport.” I thought that was a totally appropriate question to ask, and I was happy to let her pass since I am, indeed, a bit slow getting through security checkpoints. However, I was taken aback for a brief second when I realized she said “her” instead of “you” or “y’all.” I responded with, “Yeah of course, please do!” with a smile and a slight gesture for her to go ahead. For just a second or so, she seemed completely shocked and a bit startled that I had been the one to respond.

This actually happens quite often to people with visible disabilities. I don’t know if it’s because people are scared to talk to us because we’re a bit different, or if they assume we might not be able to comprehend situations or speak to people. Or maybe it’s a completely different reason I haven’t yet cracked, but it is always unsettling to realize that people talk about you when you are right there, without seeming to acknowledge your presence.

Speaking for someone when they are right there adds to the stigma that people with disabilities are incapable of speaking for ourselves. If others see it happening, it might lead them to assume it is best to automatically speak to a caregiver or person with them, instead of the person themselves. And once that happens, the cycle of being spoken for, over, and about just keeps going.

Please talk to us! Even if you doubt we’ll be able to respond or acknowledge you spoke, a hello and a smile is a common courtesy I believe should be offered to anyone, regardless of age, race, gender, or ability.

Another example: I was out for lunch and drinks with a few people and after a while the person who drove me said, “I have to get this one home.” That stung quite a lot. I was being talked about like I wasn’t even a person, or like I was a misbehaving toddler or a spouse who had too much to drink.

I wanted to snap back and say, “Hey, why do you think that? Maybe I’m having a good time and want to stay longer?” But I didn’t feel like I had the emotional strength, and I also felt like I’d be butting my way into a conversation that I wasn’t really a part of anyway.

Yes, I was having a pretty bad pain day. Yes, I was having issues with some of my other symptoms. And, yes, this was probably fairly obvious to others. But I was enjoying my time out, and I am capable of saying when I want to or need to leave. Even if you think it’s best for me to do something, please ask me before making that assumption. I probably had about 30 more minutes worth of energy to use at the restaurant. Trust me, I keep really good tabs on what my body needs.

On the way home in the car, they told me I just looked like I was hurting and it would really be best for me to leave. I wish we could’ve had that conversation while we were out instead. I appreciate that they were concerned about me. Maybe they didn’t want to bother me by asking. But the phrase “I have to get this one home” just sounded negative to me — almost like they didn’t want to leave, but I was dragging them away. Or maybe they wanted to leave, and used my condition as an excuse.

Maybe I’m being a tad dramatic with my suppositions here, but those words bothered me for many reasons. Being talked over adds to the stigma that those with physical disabilities are unable to speak for themselves and make decisions independently. It also makes me feel voiceless, and I’m guessing not too many people enjoy that.

3) When people parent me and ask questions like: “Should you really be doing that?”

I don’t need special treatment, I only need the accommodations I will request myself. I’m not fragile; I don’t need to be protected. I know my body better than anyone else, and I know my limitations. I know what I am capable of doing and what my body can withstand. I don’t need to hear something like: “Are you sure someone with your condition should be doing that? It’s a really bad idea.”

When I’m having a good day and feel like fully taking advantage of the chance to finally be a bit spontaneous and step up onto a little rock and pretend to balance, or do some other silly, slightly childish thing, I’m going to do it! I have to find my smiles wherever they’re at.

I have the amazing privilege of having good days where I might even be able to let go of my cane for a few fleeting minutes and pretend my body is a tiny bit like it used to be. I don’t want to be scolded for doing that! I wouldn’t put myself in danger and randomly do this on a regular or bad day. So when someone voices concerns like this, it acts like a weight, dragging me away from the happiness I found and exchanging it for a place of otherness and inability.

In addition, being “parented” by others gets annoying. I am adult, and having voices constantly chiming in on what I should and should not do makes me feel infantilized.

So, to sum this up: I’m getting incredibly frustrated with being spoken for and being spoken over.

Half the time, the things people tell others for me and/or about me are actually wrong and not what I want, think, or need!

I was shy for most of my life. I don’t like confrontation. So if someone’s eagerness to help me is misguided or uninformed and we’re in public, I’ll most likely choose to let it slide. I don’t want anyone to get angry and defensive or say I’m ungrateful. It took me forever to be able to find a voice and be OK with saying what I need and what works for me, as well as what is difficult or impossible for me. Now that I’ve started being a bit more vocal about my struggles, so many people are trying to be helpful, which is awesome!

The thing is, in their eagerness to be helpful and aware of my limitations, sometimes they’ll bring them up in a way I don’t really like. That’s not only frustrating for me, but it’s also embarrassing. Most importantly, though, it perpetuates a stigma which will only continue to drag people down unless we work against it by making small, subtle changes in how we interact with others.

I attended one of Mumbai’s best schools between the ages of 3 and 15. It was girls-only, it stressed learning over studying (no homework until fourth grade), and we had some really imaginative and unconventional teachers. My mother still reminisces about my first day at school, when the kindergarten teacher sat down 30 excitable 3-year-old girls and introduced me to them. She pointed out that I had some physical problems, so I wore leg braces and I needed help, and she told them they should be helpful, but welcoming and friendly.

I spent the next 12 years with more or less those same classmates. We grew up together, learning about Shakespeare, the names of all the layers of the Earth, and long division. I met my best friends there. I first giggled over sex huddled in a tiny group during a free period. In 10th grade, a few students were selected to be prefects. This remnant from the time the school was run by an Englishwoman bestowed upon these students additional responsibilities to help teachers enforce discipline. They would herd younger students to and from school assemblies and monitor classrooms in case of absent teachers. To my absolute glee, I was nominated, and a daily responsibility was assigned to me. In a country where “reasonable adjustments” was — and in some circles still is — an unknown phrase, the teachers and students seemingly effortlessly included me in everything.

Our time at the school ended when we were 15. We were moving on to high school — junior college in India — and there was a little award ceremony to mark our graduation. Certificates were handed out to students who’d scored the highest in any subject in the recent exams, congratulating them for their performances in English or Physics. I too was given an award — but it commended my “inspiring performance.”

I remember being uncomfortable when I was told about the award a few days in advance, but I dismissed my doubts as stage fright. To be inspiring is positive, noble even; it was a compliment, right? My teenage self couldn’t even begin to fathom why this could be an insult. I remember coming home and stuffing the certificate under a stack of school documents, uninterested in showing it off. (I actually looked for it last week to accurately quote the commendation, but couldn’t find it. Guess I did a good job hiding it.) I couldn’t explain the red-hot ball in my stomach, but there it remained for years.

I can tell you now — a decade later — that the flutter in my tummy was shame. I’ve experienced it several times since, during job interviews where my ability to guide an electric wheelchair was praised more than my previous experience, and at the hands of overly cheerful mothers teaching their kids how to react to the obviously disabled lady, for example. When I walked across the auditorium to collect an award congratulating my fairly normal academic performance, it felt like the equivalent of receiving a patronizing pat on my head. It was as if the very people who’d shown me I could be anything I wanted were telling me they were actually quite surprised I’d managed to pass the same exam that almost every 15-year-old in the city had conquered. You did well, I could almost hear them say, for a disabled girl.

Does it sound like I’m nitpicking? I feel like I am. I feel wretched for criticizing a single moment set within years of support, especially since I’m sure the idea was borne of love and thoughtfulness. But I guess that’s my point here: When you start to say something well-meaning or congratulatory to a person with disabilities, something like “you’re so brave” or “I’m so inspired by your determination,” stop. Think about it. Would you say something like that to a non-disabled person? Has the recipient of your keen applause truly achieved something remarkable: Did they save a child from a hungry tiger or survive three forsaken days on a stormy mountain? Or are they out doing their shopping or learning to navigate life in their own way, just like you are?

Morally responsible adults recognize the standard ways of isolating a person who looks different than them. They watch themselves for bullying or discriminatory behavior. They bring their children up to be understanding of their disabled friends’ needs, to plan accessible outings, to not imitate a limp or speech impairment. But what they don’t realize, what their disabled acquaintances and friends may not express dissatisfaction about — probably because people with disabilities are afraid it may sound ungrateful — is that alienating comments can just as easily be delivered with a smile.

Journalist and comedian Stella Young spoke about this in her TED talk in 2014. “We’ve been told that disability is a Bad Thing, capital B, capital T,” she said to her audience. “And to live with disability makes you exceptional. It’s not a Bad Thing and it doesn’t make you exceptional.” Young went on to talk about what she calls inspiration porn, motivational pictures and slogans featuring people with disabilities, aimed at making able-bodied persons feel good about their own lives.

The Establishment recently published an excellent piece about inspiration porn and the many ways in which disabled people are silenced when the able-bodied talk about them as cookie-cutter supporting characters in a motivational story. In such reporting, the writer commented: “[D]isabled individuals are rendered passive. They rarely get to speak for themselves, to communicate how they feel…”

Here’s how I feel: When I’m out for a walk in the park, and the man jogging past me shouts out, “you’re awesome!” that doesn’t feel like encouragement. It exasperates me that society expects me to not limp about the park with a friend, but to sit there with a blanket on my knees, watching kids play.

When I’m getting into the bus — usually in a little panic because I’m running late — and the kindly woman sitting by the door nods vigorously and smiles “well done” at me, it doesn’t brighten my day. This wasn’t a trapeze act; I just wheeled up a pretty solid ramp, extended by a flick of the kindly bus driver’s finger, and into an empty space. In this video, comedian Laurence Clark goes around hailing able-bodied folks who climb down stairs or use the public loos by themselves as “inspiring.” The subjects of his experiment look baffled. Imagine being disabled and going through your day, with people greeting you like that multiple times a week. Bafflement soon sours into frustration.

Congratulating a disabled person for being out in public or remembering their own name may make you feel real sensitive — but more often than not, it makes the disabled person feel worthless. It makes me wonder how low the standards are set for me, how often people expect me to fail. It reminds me that I’m not just another teenager amongst hundreds at an educational milestone, or just another shopper confused about cereal brands in a busy supermarket. No, I’m an “object of inspiration.” It tells me that no matter what I achieve or how well I perform, I’ll always be judged as a disabled marvel, not as a person.

At the same time, being called “inspiring” feels a bit dismissive. It’s a handy adjective, used by mainstream media in any situation involving differently abled people, and pulling it out is an easy way for able-bodied people to feel as if they have acknowledged the disability. It’s simpler to just drop the I-word and move on than it is to engage with the disability and the ways in which it may influence another person’s real life.

When I’m called “inspiring,” I don’t feel lonely in the same way I would’ve if a table of people had openly pointed and laughed at me. I feel isolated because each of the above examples tells me that I’m not someone with whom people can identify intelligently, that I’m an “example” of some sort.

Even after two decades of this, I haven’t come up with a good defense against being called inspiring. When people stare, I can stare back and shame them into looking away. When they overlook me, I can remember I have a fantastic family and friends who depend upon me as I do them. I can fight bigotry and discrimination with their support and on the back of years of disability rights activism.

But being hailed as inspiring, especially when it’s in the context of little everyday activities, feels insulting in a different way. It surreptitiously makes me doubt my achievements because I don’t know whether I’m really a good writer or student or singer (as people tell me I am), or whether I’m being complimented simply because it’s a convenient way to approach my disability. (Tales of my imposter syndrome belong in another essay.) The gushing “you’re soooo inspiring!” is so often accompanied by a sweet smile that makes me question my right to feel uncomfortable about my experience. It’s an other-ing that looks benign, but hurts more. And yet all I can do is smile tightly and look away and wish I wasn’t being objectified just to improve someone else’s day.

And so, I’m writing this as a plea to all those who call me inspiring. Please, I ask of you, stop.

This piece originally appeared on The Establishment and The Huffington Post.

Image via Thinkstock.

Dear labor and delivery nurse,

Four years ago we met under some terrible circumstances. You were my nurse the day I delivered my son at 23 weeks gestation.

That is a day I will never forget, and you are someone I will never forget. It cannot be easy to be the labor and delivery nurse taking care of someone you know is about to lose her baby.

You were kind to me on the worst day of my life. You cleaned our son up, swaddled him in a blanket and gave him to us to hold. You held our precious little boy like he mattered. You silently stood in the background during the two hours he was alive. You had to check every once in a while to see if his heart was still beating. I cannot imagine how hard it must have been for you to do that. After his tiny heart stopped beating, you gently carried him over to weigh him and measure him. You waited to do all of that until after his heart stopped beating so we could hold him while he was alive, and for that time you gave to us, I will be forever grateful.

You went out of your way to find a hat that might come close to fitting our tiny little boy. In fact, you went out of your way to find two. They were still entirely too big, but you tried the best you could with the supply that was available. You let us take our time saying goodbye to Robby. You did not rush us. When our family was done saying goodbye to Robby, you took him in your arms like he was a baby who was still alive, and carefully carried him away. The moment I handed him over to you was one of the hardest moments of my life, but your kindness helped. You handed me the first hat he wore so I could hold onto it. That hat is the only physical evidence I have of him and for that, I will be forever grateful. Then you took the second little hat that was identical and placed it on his head as you took him away.

After we handed Robby over to you, you made sure I was moved to a different floor. Being on the labor and delivery floor and in a labor and delivery room was too hard. I did not even have to ask – you just moved me to a completely different floor, a floor where there were no sounds of all the joyous others who were delivering full-term babies to take home. A floor far away from the room I had just painfully lost my little boy in and for that, I will be forever grateful.

The next day you came up to my new room and  brought me a fresh chocolate chip cookie from the cafeteria. You wanted to check on me to see how I was doing. You helped me on the hardest day of my life and for that, I will be forever grateful.

Thank you kind nurse for being so thoughtful, understanding and caring during that terrible time.

Real People. Real Stories.

150 Million

We face disability, disease and mental illness together.