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August 27, 2014

To Post or Not to Post?

I remember one of the first photos of me printed in a local newspaper, way before the internet. I was sitting on a watermelon, somewhere in Central Park, eating a big cookie after a watermelon eating contest. Back then, I had a belly laugh and an adorable smile to match that could make anyone chuckle without fail. The photo promoted the contest, and was completely harmless because I was just a cute kid eating a cookie – not a symbol of disability.

On a leading social networking site that I'm a member of, I often see posts from disability organizations that feature pictures of children with physical disabilities such as cerebral palsy with messages from parents like: "Such an inspiration!" or "Accomplishes feats of strength every day!" I often wonder if the digital shout-out from parents, no matter how well-intentioned, does more harm than good.

The parents who post these photos and comments probably mean well. However, they may unintentionally set unfair expectations of how people with disabilities should appear and conduct themselves.

Example: Picture of son/daughter either sitting or standing, usually smiling and very well groomed.

"My son/daughter (insert name) was born with (insert name of disability), he/she is (insert age) and is such an inspiration! Always has a smile on his/her face! He/she brings so much meaning to my life!"

The term inspiration has been so overused that it almost loses its meaning. On one hand, statements that declare a child to be an "inspiration" set an unfair expectation for him or her to live up to. The truth is, few of us accomplish feats of strength every day and if that expectation is always in a child's life, it will be – for lack of a better word – crippling for his or her self-esteem.

On the other hand, to boast, for example, about getting your son with a disability up and ready for school with the tagline: "Such a sleepy head but I am so proud of him!" seems awkward and, as an advocate and someone with a disability, it rubs me the wrong way. Would you write that about your child if he didn't have a disability? The fact that a child has a disability and is being praised for living through ordinary moments seems to set low expectations for what he or she can accomplish.

To say a child "always has a smile on his/her face" also seems to promote an unfair expectation. The number of people in the world who are genuinely happy all of the time are few. There are even fewer who are able to maintain that level of emotion – to the point of constantly smiling.

I'm not saying that parents are actively trying to set unfair expectations for their children. Nor do I ever doubt that they truly love their children with disabilities. What I do have a problem with is when someone promotes a person with a disability (especially children) for no other reason than the fact that they have a disability.

It would be completely understandable if you wanted to raise awareness for a cause. However, these posts give off the impression (whether intended or not) that ordinary moments in the lives of people with disabilities should be documented and actively promoted because they live with a disability.

Do the parents think about what the child currently thinks or feels or how they may feel eventually about their "15 minutes of fame?" Do they consider how it may contribute to their child being defined by his or her disability?

What happens is that constantly seeing these posts paints disability in an unrealistic light and may actually have the opposite effect that proud parents want to have.

There's a picture posted by a mother on one on the pages right now of a teenager with cerebral palsy, standing and looking off in the distance; one of his hands is rubbing his chin while his other hand is between his legs. Please tell me what message this photo is trying to send. Would the parent of someone who doesn't have a disability post a photo of their child in a similar pose?

As a male who has cerebral palsy, I worry about the social connotations this photo carries. While the boy's mother declares her pride in her son and clearly meant well, what she failed to realize is that by posting a photo of her son in a pose that would be considered inappropriate for most people, she promoted a social assumption that males with disabilities cannot – and shouldn't be expected to –  act in a socially acceptable way.

When considering whether to post or not to post, it's important for parents to consider the impact on their children, especially considering the fact that the internet never forgets. Once an image or comment is out there, it’s out there indefinitely.

First article

Tags: Advocacy; Childhood

Coming off of my Huffington Post début while writing for YAI (and hopefully another one forthcoming), I entered the office this morning with a thought: "This feels good!" It is very gratifying to be recognized for your talents, at any level. Then another thought occurred to me: "Keep my ego in balance." Yes, I did get recognized and it is a tremendous honor. I am still me, though, a young professional trying to make his way. I am reminded that the ideas and concepts that I put forth are often more important than any one person.

I was born Irish, Scottish and Italian — and this is independent of my disabilities. I come to the office and I work seven hours a day. I'm just like everyone else and it feels good to say that. Having not very visible disabilities is both a gift and a curse. A gift because I get to challenge, and hopefully change, perceptions of what others think people with disabilities can and cannot do. A curse because since I don't fit a common notion of what having with a disability is, people don’t know what to make of me sometimes. Because of this, they jump to all sort of wrong conclusions. More often than not, they don't give me a chance.

This is a common plight for people with disabilities and we experience it in the workplace, in relationships, in education, in health care or even within our own families. If a person with a disability makes something of himself/herself, he or she is often elevated to the status of being a "Super Crip," someone who has made it against all odds. This is again, a gift and a curse. Often a short-lived gift, because once your "fifteen minutes of fame" is up, people tend to forget you and what you did in the first place. Our culture has a bad case of A.D.D. The curse of being a "Super Crip" is that if you can't maintain a high level of function for whatever reason, people lose interest in you — fast.

It is even more of a curse for other people with disabilities because it puts yet another expectation on them to be on par with the "Super Crip." Our culture either doesn't expect anything from people with disabilities — or they have way too high expectations of us. Either way, people with disabilities aren't given many chances, while some aren't given any chances at all.

My talents are influenced by my passion and vice versa. They both come from my disabilities. I view my cerebral palsy and my creative spark as inseparable from one another. A life coach I worked with several years ago, told me that there was nothing more important than a life of love and service to others. Every day in this office, I feel those words and the massive impact they carry.

While reading another Huffington Post blogger, Trisha Lynn Sprayberry, in her post, "The Gift My Disability Gave Me," she writes that through her disability: "I was gifted the vision to see beyond the flaws of the human condition, to advocate for an equal life experience for those with disabilities." I agree with that statement and I truly believe that passion colors everything through love and service.

First article

Tags: Employment

August 15, 2014

Dating with Disabilities

At the end of my last blog, which was about "Seeing Beyond Disability," I mentioned a social connection of mine that might progress. Since that post, my relationship has done just that, and I have spent some time thinking about dating and disability.

Online dating has made it easier for people in general to meet each other. However, living in this day and age of online connections, a double-edge sword presents itself every day — the ability to be more socially connected or to be more lonely.

Someone can be anyone online — they can be true representations of who they are in person, or they can become a digitalized recreation into some "ideal" image of themselves. As such, they can find and connect with a vast audience that is extremely diverse. Nowadays, people could meet each other in ways not possible a decade ago and in some instances, the internet can be the only way for certain people to meet.

Online connection however doesn't always meet our social needs or ward off loneliness. Loneliness can feel like one of the worst experiences in life, and hearing well-meaning sayings such as, "You must learn to love yourself before anyone else can," can only dull the often uncontrollable ache, especially if you hear it time and time again. Learning to love oneself is a lifelong journey after all.

Of course, there can always be a combination of social engagement and loneliness at the same time, especially for people with disabilities, who are often socially marginalized from their peers who don't have disabilities, or even from each other. There may be more social inclusion and acceptance through online connection today, but isolation, suspicion of and stigmatization against people with disabilities is still a problem throughout society.

Meeting Amber

I met my partner, Amber, through an online dating/social networking site. Soon after we connected, I proceeded to totally ignore her for a week when I went on a meditation retreat. You know, just how all the dating guide books tell you a great relationship should start!

Given that it is the start of a relationship, the "honeymoon phase" as it's often called, can be very passionate and exciting – with a natural amount of uncertainty. There are a lot of hopes, fears and expectations during this "discovery stage" that may or may not come true.

At the beginning of a new relationship there is hope that the other person will accept, understand, like, and maybe even love  us; the hope that they will turn out to be who we want them to be in terms of sharing our values, sense of humor, ways to spend time, etc. There are fears that neither of us will live up to these hopes. There is the expectation that we'll give each other a fair shot at finding out if we're a good match. This is a time of exploring our differences and the things we share in common. How does disability impact this?

When one partner has a disability and the other does not, which is the case for Amber and me, things can get very interesting: especially considering that we will probably have to contend with, at one point or another, not only what we are learning and feeling about each other; but with opinions and questions from others that will make us cringe.

Questions about my voice will undoubtedly come up and some people will stare. Although it hasn't happened yet, friends might ask Amber why she's with me because in their opinion, she could do so much better. After all, why would anyone want to settle for "less" than they deserve?

While this may be a common experience for anyone becoming a new couple who endures criticism of their partner from friends and family, it can be magnified for people with disabilities, who are often judged on things besides their character, values and other traits that might make them good partners. Disability is an easy target as the deciding factor of the potential success or failure of a relationship, most often failure.

These things may or may not happen, but I have faith that if two people have inner strength, level heads about them and good communication between them, then love has a chance to endure.  

Cary and Melissa

Cary and Melissa are a testament to the idea of steadfast dedication in a relationship. They have been together for two years, and from them I have learned that each phase of a relationship has its ups and downs.

Several years ago, I met Cary at American University in Washington, D.C., while taking a music course. We met in class when the teacher pointed us out to each other and the fact that we both had Cerebral Palsy — in front of the entire class. While that introduction was an unsavory experience, it sparked a lifelong friendship.

He and I shared many things in common besides our Cerebral Palsy, chief among them our fondness for music — and our dating woes. We always seemed to get led on by women, only to get our hopes dashed for a genuine connection. I know that this type of "leading on" or "being played" happens to people without disabilities as well and that guys do it to women, too. People with disabilities, however, are often more easily dismissed. I talked to a woman on the phone that I had met online through a dating site and the following day I asked her through a text message if my voice was what she had expected; she replied: "I expected your voice to be as handsome as you are." I am still trying to figure out if that is a compliment or not.   

Cary had a number of short relationships that ended in frustration and heartbreak before he met Melissa, who had gone through similar experiences. Melissa did not have a disability, but like Cary, longed for a real and meaningful connection. They met online through a dating site and started talking. Cary mentioned on his profile that he had Cerebral Palsy and Melissa, who had no idea what that was, looked it up. She was curious about him, having been attracted to his sense of humor, and decided to take a chance by meeting him in person. That was over two years ago.

I had lunch with Cary and Melissa the other day and, after sharing their story, Cary said to me, "I think people with disabilities often have idealistic expectations of what it means to be in a relationship and what I have learned is that being in a relationship is a lot of hard work." Melissa smiled and nodded in agreement.

Things are not always easy for Cary and Melissa. Sometimes when they are out, they experience stigma and downright discrimination. One time at a bar, a man got up from his seat to go to the bathroom and when he returned to find Cary in his seat, he said to the friend he was with, "I can't believe you gave my seat to a cripple!"

This made both Melissa and Cary understandably angry and reminded them that ignorance and fear of difference unfortunately persist.

The Disability Factor

The dating dilemma that many people with disabilities find themselves in, more often than not, is that they are not given a chance to date. People without disabilities are simply not open to it. As one of my cousins pointed out to me the other night, "When people think about dating and the dating culture, they don't really think about people with disabilities, and if they do, it is often how to exclude them from dating. "The thought of them [people with disabilities] dating, makes us [people without disabilities] uncomfortable." While this is not always the case, it is common enough to mention.

In some ways I understand the notion behind the fear of dating someone with a disability. There's the common misconception that the partner without a disability will end up being a caregiver more than an equal partner, and the view that disability is a weakness rather than a strength. A former partner of mine said that she thought that women were probably intimidated by my disability and what it implied about my needs as a partner, and that they did not know how to get past their fearful reaction.

Having a disability should not be a deterrent to emotional connection, especially in the romantic sense. A person with a disability might want to date someone who also has a disability, for reasons such as mutual attraction and shared understanding. Or they might want to date someone who does not have a disability for the same or other reasons.

The common assumption that two people should date because they both have disabilities, or that they are dating because they both have disabilities, is very annoying. It's like assuming that two people who are tall, for example, should date or are dating because they are tall. A person with a disability should have the freedom to date whomever they chose – and experience the same risks of heartbreak and love and everything in between – just like everyone else.

To be desired and to feel loved is one of the cornerstones of what it means to be human, and it should be available to everyone, regardless of difference, be it an accent, walking style, learning style or something else. Humans have had this very unhealthy obsession with sameness for far too long, and any difference has been met with fear and has been demonized as a result.

Yes, to be in a relationship with someone with a disability requires taking a chance and giving that person a chance. But the same is true in regards to any relationship. Dating someone with a disability may or may not have more, or maybe different challenges, but that does not make the relationship or the partner any less worthy of taking a risk and trying to make a meaningful connection.

It takes strong people to look beyond disability, and to have the emotional fortitude to look within to see that we all have talents, limitations and the ability to offer love.    

First article

Tags: Person Centered

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