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On the subject of what is considered normal, actress and comedian Whoopi Goldberg offers us this insight, "Normal is nothing more than a cycle on a washing machine." I first saw this quote as a meme on a social networking site, in the picture used to illustrate the quote was a young daughter asking her mother what does normal mean? On hearing her daughter's question, the mother laughs and without even looking away from the magazine she is reading answers her daughter. 

According to YAI's website, "Hankering For More (HFM) is a program available to high-functioning adults with learning and developmental disabilities who live in and around New York City. HFM provides intellectually and culturally stimulating social and educational opportunities that encourage meeting new people, making friends and developing life-long social skills."

If you ask several people what they consider normal, you are bound to get several different answers, especially if you ask people from different cultures. The term "same" is usually on par with the term "normal" while the term "different" is not. However, in my opinion, normal and different are more alike than people think. To be different is to be normal since all of us are unique in our own way. Common is a word to say normal and that is much less threatening.

The fundamental reason humans hold so tightly to the concept of normal is because of our collective obsession with sameness. With sameness, we feel safe and protected. With difference, we feel uncomfortable and in danger. Humanity has a very long history of trying to uproot difference by demonizing it every chance we get, even though we were always meant to be a diverse collection of abilities.

The idealistic desire to be perfect, which masquerades itself as a need, is in fact, nothing more than an illusion. One that can never be fully realized or accepted because this world in which we live in is imperfect and as such, the imperfect cannot handle the perfect. Even if it could, perfection is boring — there is no push to improve, to grow. In the void of perfection, there is no spark of curiosity and therefore, no excitement.

To be normal is seen as a stepping stone on the long road to perfection and therefore, peace of mind. However, the end point is not reachable and if the end point is not reachable, then the stepping stone — or rather, the concept of what the stepping stone represents — is ineffective. Normal is nothing and on this side of the Great Divide, it leads to nowhere.

Acceptance of diversity at all levels — movement, speech, intellect — should be the driving force of humanity, rather than the obsession with sameness and perfection. And it is attainable. When you look at the concept of normal with an open mind and heart, you begin to see how something that was hailed as the standard is actually quite limiting. Diversity is not made nor meant to fit in a box. Therefore, disability, which is another form of diversity, is the answer to normal and its limiting scope, not the other way around.                

First article

Tags: Advocacy; Education

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

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