seeing disability through a different lens

I’ve made it no secret on this blog that I wasn’t the most confident person growing up. I hid my limb difference as much as I could and refused to display it in photographs until very recently. I was taught from an early age that my lack of a hand was something that should be hidden. If you look at the pictures (the few that do exist) of my early teen years, you’ll find it’s nearly impossible to tell that I’m missing half my left arm. By that age, I’d already become a pro at disguising my defect (or what I considered a defect back then, rather) using sweaters, jackets, long sleeves and gloves. I was determined to look as normal as possible and grew embarrassed whenever someone would call attention to my missing hand. Things have fortunately changed since then and I’ve come a long way in building a better self image. But sometimes I think about my old pictures and regret all the anxiety and energy I put into hiding myself.

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15-year-old me always opted for long opera gloves

When I think about my relationship with my disability as a child, I always wonder if maybe there were things I (or those around me) could have done to help me feel more confident about looking different. I did go to camp for kids with disabilities a couple times, but their main focus was more on learning to use my Myoelectric prosthetic and functioning in a two-handed world. They didn’t really address the topic of body image, and it wasn’t like there was any representation of limb difference on TV or in movies. So who’s a limb different girl to look up to in this looks-obsessed society? When is a child with a disability allowed to feel like she can be beautiful just as she is?

A few days ago, a close family friend sent me a link to a post about a photographer who snaps pictures of her daughter and creates beautiful dream-like scenes with them. The little girl, Violet, does not have a left hand, but that’s hardly the main reason for staring at the images. Violet’s mother Holly Spring has used digital editing to transform the backgrounds into several different fantastical worlds for her daughter to inhabit,  images that include giraffes, enchanted meadows, and sunset boat rides. Her muse and model absolutely shines as she smiles, poses, and dances for the camera. And what’s one thing I can’t help but notice in all the photos? While not all the pictures display her smaller arm, little Violet clearly makes no attempt to conceal it.

Holly Spring's photos features her little girl embarking on various whimsical adventures

Holly Spring’s photos features her little girl embarking on various whimsical adventures

What we see in Spring’s photos is a girl who has more confidence as a kindergartener than I’ve been able to muster in more than two decades. Her joy and freedom and self esteem are palpable. What we don’t see, however, is Violet’s mother who stands behind the scenes. But Spring is more than just the photographer here. She is the one responsible for her daughter’s glow, building Violet’s confidence by casting her in the spotlight and showing her how beautiful she is. I think the most important factor in growing a child’s self-confidence is letting them know that someone they love believes in them and believes that they’re beautiful, that their physical difference does not detract one bit from that beauty.

1524823_741268325885514_164229681_n 2Violet is still young, and her opinions about herself will develop and evolve as she grows older. That’s a fact of life, and we all go through moments of self-consciousness and insecurity. But I hope that when that time comes, when doubt sneaks its way into her mind, that she will take one look through her childhood photos and summon even an ounce of the easy confidence she displays in those radiant images.

 

 

(Second and third images belong to Holly Spring)
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his side

Before I post anything, I just wanted to ground you in some context. Alyssa and I have known each other for almost a decade, and she’s one of my best friends. We’ve seen each other through headaches and heartaches and everything in between in our years as coworkers, classmates, and friends. She and Anthony have been officially dating for a few weeks now. They have graciously shared their story with me and have allowed me to publish it to this blog. Today’s and tomorrow’s posts will feature their story. So stick around because I can assure you it’s a good one. 🙂

BenchHey there! My name is Anthony. I was born and raised in Staten Island, New York. I am currently 21, as of March. I am a musician, audio engineer, photographer and (sadly) a Kmart employee. Now that you know some stuff about me, I’ll tell you why I’m writing in Caitlin’s blog.

Caitlin was kind enough to let my girlfriend Alyssa and me talk about our disabilities and how they affect our daily lives. While I am open about my status and disability, I don’t think many people know that I was born with HIV (Human Immune-Deficiency Virus) and a “minor” case of Cerebral Palsy. Some of you might’ve learned about HIV in high school, but I know most of you never paid attention in health class. It’s okay, neither did I.

All jokes aside, HIV is primarily a sexually transmitted disease, but it can be transmitted in so many different ways whether through semen, blood, breast milk, or natural childbirth. I contracted the disease from my birth mother. My foster parents adopted me at two weeks old and were unaware that I had acquired the disease until I was about a year old, if I remember correctly.

BirdAnyway, HIV basically affects the immune system. The disease restricts the immune system and hinders its ability fight off any bacteria, infections, colds, diseases or other viruses. HIV also leads to AIDS (Acquired Immunodeficiency Syndrome), which basically means you lack an immune system and are not able to fight off anything, not even the common cold. People still think those with HIV/AIDS die of AIDS. That’s wrong. They actually die of the common cold or whatever they’re sick with.

Now that you know what HIV/AIDS is, I’ll talk a little about Cerebral Palsy. Cerebral Palsy (or CP) is similar to Alyssa’s condition, Rheumatoid Arthritis (also known as RA). Cerebral Palsy is a low-muscle-tone condition that restricts some parts of the body, if not all, from doing everyday things. People with severe CP usually are unable to walk or move certain parts of their body. In most cases, including my own, CP involves the mouth/jaw area. This causes the person to speak differently than others.

When I was diagnosed with CP, I wasn’t supposed to be able to walk or talk at all. However, my foster parents supported me in every way and I have thrived over CP with the help of some physical therapy as well as speech therapy. My CP is located in the tongue area. I can’t move my tongue, which keeps me from talking normally. I have a hard time sounding out S’s, F’s, and L’s. Most of it is from laziness, but with some effort on my side and the listener’s, I can be understood.

Living with HIV and CP have made me the person I am today. Sounds cliche, but it’s true. I don’t think I would’ve been able to do the things I do now, such as play guitar or any other instruments. I was on a 1st-2nd place bowling team for years until high school. I ran track, I was in NJROTC (Naval Junior Reserve Officers Training Corps), I lifted weights, I did yoga, and God knows what else. Flower

As you can imagine, I was made fun of a lot as a kid. My parents wouldn’t let me out of the yard because of my HIV. They were afraid that I would hurt myself and bleed, and infect someone. They were also afraid of what others would think of me having the disease. This has caused me to be somewhat shy and reserved. By the time high school came around, I had learned to keep my shyness and antisocial habits at bay. However, I was still nervous and weary about my status and condition, especially in relation to girls.

HIV and CP both took a major toll on my social and relationship/sex life. I dated a few girls here and there, but the majority of them wouldn’t accept me for who I was. I wasn’t completely open about my HIV status until my senior year of high school. So the girls I dated then only knew about my CP. Still, CP was enough to throw most girls off; they would often think I was mentally handicapped. I shook every rejection off my shoulders because I knew I had better things to worry about in my life. I was always the “I don’t care, shit happens” kind of guy.

A few months ago, I let down my guard and started online dating. I met some pretty interesting people, but the same issue occurred. They didn’t accept me for who I am. Since then, however, I’ve met someone worthwhile: Alyssa. As she will talk about in her post, I had the same apprehensions as she did when we first began speaking. We both brought up the topic of health, and we kind of just accepted each other on the spot. She brought up her RA as I brought up my HIV and CP. Our conditions worried the both of us, and we had our fears about how it would affect our relationship if we ever did decide to date.

After some time talking and spending time with each other, we’ve learned to accept each other (including our health issues) completely. It wasn’t easy at first though. I was brought up with a close-minded father who made me anxious to date anyone of a different race or less-than-perfect body type or disability. I did not let that get to me this time, though, because I knew she was the one for me. Alyssa and I finally decided that it was time to meet my parents last week. This was hard for me, but I finally gave in to the idea and sure enough, everything turned out well!

White FlowerMy parents love her, my grandma loves her, even my dogs love her! Our relationship really brought my spirit up in every aspect I can think of. Before, I was never able to show affection to a girl because I was always afraid I would drool on her due to my CP. I was afraid I would get made fun of for not being able to pucker my lips. I was afraid I would be pushed away for not being able to French kiss. But now things are different. I show Alyssa all the affection I can, not only because she’s a bit insecure due to her past relationships, but because I know she won’t judge me for who I am. She deserves every peck on the cheeks, lips, arms, hands, wherever it may be. She’s really special to me. And as is said in Robert DeNiro’s film A Bronx Tale,”The only thing that matters is what’s good for you and how you feel about each other. Let me tell you something, when you’re alone late at night in bed just you and her under the covers, that’s all that matters. You gotta do what your heart tells you to do.”

– Anthony Arrigali

All photos in this post are courtesy of Photography By Anthony Arrigali

Stay tuned for her side of the story. Alyssa’s post will be published tomorrow. Thank you for reading, and leave your comments for Anthony below.

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