culture collision

There are quite a few things you can learn about me just by looking at me. You can easily tell that I’m pretty tall, that I care about what I’m wearing and how I present myself, and that I have one hand. But something that always seems to take people by surprise is when they find out that I’m Hispanic. Granted, it’s not the most important fact about me and I’m probably not going to introduce myself as “Hi, I’m Caitlin and I’m Hispanic”, but it’s so funny to me how people instantly assume I’m either Irish or Italian or any number of different European nationalities. (And they’d be right on some level, since my entire family has roots in Spain.) But it usually takes listening in on me conducting a phone call or conversation entirely in Spanish for most people to realize that they had it all wrong.

La Caridad del Cobre

I was born here in the U.S. to Cuban parents, years after they’d left their beloved homeland and established themselves in the land of the free. Just to be clear, they met and married here (well, in Miami), so I’ve lived my whole life in Jersey. I grew up listening to Celia Cruz, dancing to salsa, and eating arroz con pollo and lechon. I learned to speak and read English and Spanish together, and I celebrated Christmas on Christmas Eve (aka Nochebuena). As much as my family has assimilated into standard American culture, they have not given up the traditions of their motherland. And that’s something that I want to explore because one thing that definitely plays into how people view disabilities and limb differences is culture.

Although I’m not an expert sociologist and can’t tell you exactly how Cuban or Hispanic cultures as a whole see disability, I will say that everyone around me was pretty supportive while I was growing up. My parents encouraged me to try and fail and try and succeed with everything in life. They didn’t really treat me all that differently, and they expected the same straight-A report cards and model behavior from both me and my three-years-younger and physically normal sister. But as much as I’d love to think so, I can’t say that there was no pain or drama tied to my family’s sentiment towards my limb difference. My hand is not something I openly discuss with them because it just brings back too many hurts. Still, the worst of it was from my maternal grandparents, who once desperately attempted to hide me (and my lack of a hand, specifically) from their neighbors when I was just a kid. (I still haven’t forgiven them for that, but it’s not like they ever apologized anyway.) I know they didn’t do it out of cruelty, but it wasn’t exactly the message of acceptance and unconditional love most would agree you should show a 9-year-old. And of course, I do think that their years of living in a very rural area in Cuba added to their naivety.

Painting of Cuban patriot Jose Marti

Anyway, I expected the same sort of hushed and self-conscious behavior from my boyfriend Chris’s family. He’s half-Irish and grew up very close to his Irish roots. I thought that they would treat my limb difference as something very unfortunate and sad, but that’s not the case at all. I asked Chris if they’d ever commented on my hand or said anything negative about it, but he answered that they hadn’t. About a year into our relationship, he casually mentioned that one of his cousins wore a prosthetic leg. “Wait…what?” was my response, as I stopped him mid-sentence. He seemed perplexed a second before he realized why I’d stopped him. “Oh,” I remember him saying. “I never told you?” No, he hadn’t. He had completely forgotten by complete accident. To Chris (and to his family), something like a limb difference wasn’t a big deal. I don’t know if that sentiment is an Irish thing or just a Chris’s-family thing, but I have noticed (based on my own experience) that people from European cultures are much more likely to overlook a disability and to separate it from the person’s personality in general. Hispanics, though many usually do get over the disability, tend to be initially filled with (always unnecessary but typically well-meaning) sympathy and pity for what I (or whoever it may be) have “lost” or lack. This is especially common in older people, particularly those who grew up thinking that disability is caused by an “evil eye” or as punishment by God. This is not always the case, though. There are exceptions in all cultures. And while I don’t know in exact detail how culture affects or defines the way people look at disability and limb difference, I do think it’s a very interesting topic to look into.

Let me know what you think about the connection between culture and attitude toward disability in the comments below.

Peace,

Caitlin Michelle

Photo of Cuban flag found on Google Image search, rest taken by me at Cuba Nostalgia event
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her side

You’ve heard his side, now read Alyssa’s story:

Hi all 🙂 I’m Alyssa, I’m 21 years old and I’m a student, a writer, and a children’s author (among other things). When Cait first suggested that Anthony and I guest post on her blog, I wasn’t exactly sure how I wanted to go about writing it. I think it would be appropriate to start by mentioning my own problems and fears, since I obviously know myself best. Rheumatoid Arthritis (also known as RA) is an autoimmune disease. It affects mainly the joints, making them stiff, swollen, and painful. It also causes fatigue and damage to the internal organs. It is not contagious like HIV. No one really knows why people have RA, but you can be genetically predisposed to it. I was diagnosed in November of 2011, but I’ve had the symptoms for many years. When I have a flare (which is the period when the disease is most active) I am unable to type, usually can’t get out of bed, and have the ability to sleep for 18+ hours. Activities that I used to take for granted (like brushing my hair) can be almost impossible for me during this time. But the point of this post isn’t to talk about my disease in detail. You can visit my blog for that. Despite my troubles, I try to be my old self as much as possible maintain a mostly positive attitude (though we all have our bad days). Sure, I had to give up some stuff (no more guitar playing for me!), but who doesn’t have to sacrifice?

Having RA made me really apprehensive about dating. My ex and I were already together when I was diagnosed, so I didn’t feel the pressure to try and be “normal.” But then we broke up, I realized that there are going to be men out there who can’t accept me for my “disease.” I’ve had guys tell me before that they were only interested in dating healthy women, and an overweight, sick woman such as myself would never cut it. I was so worried that I’d never find anyone  who would want to be with me. What guy wants to date a girl that could potentially be a burden?

I started talking to Anthony online in August, and I was worried that it was going to be the same deal with him. We’d talk, we’d both be interested, I’d feel comfortable enough to tell him about RA, and he’d never talk to me again. So when I told him about my RA, I was in for a surprise that a) he didn’t reject me and b) he told me he had CP and HIV! I will admit that I was both relieved and apprehensive then. He told me that CP affected his speech. Would I be able to understand him? Would I make a fool of myself if I couldn’t? Would I insult him if I asked him to repeat something? I didn’t really know much about the condition, and that worried me. Then there was the HIV part. I like to think that I’ve been well educated about the disease. But of course, I still had my concerns. My immune system is already compromised, and I don’t even want to try to imagine what having HIV on top of that would mean. I was worried that having to be careful about everything we did together (and I’m not just talking about sex here) would mean that we would be spending less time enjoying each other. This prompted hours of research. I will also admit that I was worried about what other people would say about us. I knew friends and family members would pull me aside and tell me that I was taking a huge, unnecessary risk by being with Anthony. They would be concerned about me having a normal (there’s that word again) and happy life. The part I really didn’t want to hear was “are you sure you’re just not settling?” No, I’m not. I found a guy who can accept me for who I am. My life is not normal as it is, so why let this stop me? And I am happy. Fortunately, my mom and sister love him, and my friends think we’re a cute couple. Of course, it took meeting him for their concerns to go away.

Anthony and I have been together about a month now. Instead of worrying about what our diseases prevent us from doing, we try to find a way to laugh about them. We joke about our compromised immune systems and the fact that we’ve been passing the same cold back and forth since we’ve gotten together. When I’m feeling too tired or sick to go out and do things, he’s perfectly content coming over to my house and spending the day in front of the TV watching old cartoons and eating Chinese food, and giving me the occasional foot or back massage. When we’re out in public, he’ll grab my hand and start rubbing my sore, stiff fingers to try and loosen them up.

So we can’t kiss like other couples. So we can’t play the guitar together. But I still try to take care of him to the best of my ability. I made dinner for him for the first time, and I’d say I did a good job. I need to accept that I won’t always be able to take care of him, and that I will need to be taken care of every once in awhile. I think Anthony already has that concept down. So as long as we’re both happy in the relationship, why should anything else matter?

– Alyssa Pierce

Follow Alyssa’s blog My Battle with RA and visit her (and her books!) at http://AlyssaPierce.com

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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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help

I’ll be the first to admit this: having a disability is not easy. I’m not referring to the limitations of it (which for me have been few, if any) but rather the perceptions of it. Most people seem to view disability as an inherently bad thing and thus focus on the negative aspects, emphasizing the “dis” part instead of the ability. With people constantly staring with sad expressions and extending their pity, it’s easy for someone with a physical difference to fall into a sympathy spell of his or her own creation once in a while. I’ve fallen into this trap quite a few times, throwing myself mini pity parties and forcing my boyfriend and closest friends to attend. They’re all party poopers, though, and are always unwilling to indulge me. My boyfriend Chris is quick to roll his eyes at me and remind me of what I can do. He refuses to see me as weak or incapable in any way.

Sorting out baby clothes

I hope no one misunderstands me; I’m not saying that going out and finding a significant other is going to fix all your problems and make you think 100% positively all the time. I had to face my issues on my own, long before I was in any relationship. Having a great support system in my friends and family and boyfriend is a real blessing, but it’s not a panacea. In my 20 years as a one-handed girl, I’ve had plenty of time to figure out ways to find the strength and acceptance in myself. And there’s one particular way that changed my view of myself immensely.

The title of this post is not meant to be taken as a noun (as in “I need help”), but as a verb (“Go help”). When I was 18, I went on a weeklong service retreat in upstate New York. It was before I began dating Chris, so he wasn’t even in the picture at the time. It’d been a tough year and I was still adjusting to all the new changes. I was a college girl who was no longer forced to wear ugly uniforms and who went to a coed school (I had gone to an all-girls high school), and I was about to spend a week of my time volunteering at several new locations and explaining to a whole new group of people what was “wrong” with my arm. In short, I was nervous. More than nervous, really. I was freaking out, particularly about the thought that people might give me a lighter load or not let me work because of my hand. I was determined to prove myself, though.

It’s funny because I don’t recall a moment that week when anyone questioned my ability to do something. On the first day of the retreat, I was painting the interior of a replica building of St. John Bosco’s childhood home in Italy. By the time I got back to my dorm room, I couldn’t move or feel several parts of my body. My clothes were covered in dust and dirt, and there was a huge paint stain across my cheek that wouldn’t wash off for nearly two weeks. I didn’t want to leave my bed and I even doubted my ability to make it through the week. But in spite of the exhaustion and pain, I was extremely grateful that I was able to do the dirty work (literally) without anyone mentioning my arm.

The rest of the week went just as smoothly. I did what the other volunteers did. We served at a food pantry, lugging heavy boxes of canned food down to the storage area. We helped out at a safe haven for abandoned and/or unwed pregnant women, where one mother asked me to hold her beautiful 2-week-old infant Elijah. We repainted and remodeled a park in a poor neighborhood. And at the end of it all, with my tired limbs and sore muscles, I felt great.

At the risk of sounding cliche, I really believe that that retreat changed my worldview. For the first time in my life, I felt like I was strong and so unworthy of anyone’s pity. It allowed me to take the focus off worrying about what people were thinking about my hand and to concentrate on helping others with immediate needs that I could meet. Who cares if you have a minor physical disability if there are people who are crippled by poverty, abandonment, and fear? Sometimes it’s our “flaws” and perceived brokenness that allow us to relate and get through to another person. In the end, all we can do is embrace everything we are and try our best to help.

Peace,
Caitlin 🙂

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happy birthday to this guy right here

  On this lovely day, my wonderful boyfriend Chris turns 23. Yep, 23. He’s getting to be an old man! (Okay, I’m being hyperbolic.) Anyway, the handsome man you see here happens to be the most amazing human being I’ve ever met. He’s sweet, funny, smart, loving, and a zillion other great qualities that cannot be confined to a short and simple blog post. To sum it up, he’s my Prince Charming. I’ve never been one to believe in fairytale romance, but this is the real thing. Chris just gets me. He loves me on my good days and my bad days (and trust me – you don’t want to see me on a bad day.) He’s seen me go from deliriously happy to angry to sad to practically insane, often all within the span of an hour. He appreciates my strangeness, my nerdiness, and even my moodiness.
Being silly
  And in case you were wondering, he has been absolutely 100 percent supportive about my arm. He’s the one who’s given me the courage to stop wearing my prosthetic all the time, telling me that he finds me prettier when I’m comfortable. And you know what? He’s made me believe it too. I do feel a lot happier and more confident without it. I look like myself. And according to Chris, that’s a pretty good thing.
  So yes, I really hit the jackpot in terms of finding my other half. And now, I get to celebrate another year of his life, another beautiful year we’re together. I’m off to go eat some yummy cake now, but I’ll leave you here with a quote by an author I really admire (because if anyone knows anything about love, it’s him):
Peace,
Caitlin 🙂

 

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