Growing-Up Dominican and Disabled

By Juana M. Ortiz

The first impression is the one that counts. Judging others is common because having a good physical appearance is essential in order to fit into society.  I was born and raised in the Dominican Republic (DR).  In 1972 a couple of months after I was born, I was diagnosed with Cerebral Palsy.  According to the doctor, the left side of my brain was affected due to a delay during labor.

As a little girl, I didn’t have the opportunity to attend to a traditional school. Special education or services to teach a child with CP didn’t exist in the DR.  Although, I still had the desire to learn, to have friends and to live the same way that the kids of my family and neighborhood lived.

I grew up hearing people asking why I was walking that particular way, or if somebody put a curse on me. On a few occasions, I was outside and people stared at me like I was from another planet. What was even worse was that some kids made fun of me because of the way I walked or the way that I talked.   I have had to learn to live with these types of situations throughout my youth. All these experiences were the hardest part of living with CP in a society where children with physical limitations were not well accepted.

Some people in the DR follow the Santeria or Voodoo beliefs. These two practical beliefs are not recognized officially as the Roman Catholic religion, which is the major religion faith in the country.  In other words, people though that I was borne with CP because a person who follow the Santeria or Voodoo put a curse on me.

At that time, accepting myself, as a person with Cerebral Palsy, was the biggest challenge that I had to face, even though I had a lot of support from my family. There were times when I felt bad for myself, and I went to bed at night and cried because I couldn’t do the same things that the kids my age were doing.

The next day I’d wake up like nothing had happened to me the night before. I‘d wake up being the child that I was before I went to bed, without telling anybody how bad I felt. I hated when somebody outside my family showed any expression of sympathy or sorrow and I didn’t want my family to start showing the same expression either.

It is time to stop stereotyping, and start creating awareness about how people with physical limitation should be treated. Home is the first place to initiates the awareness about this issue. Frequently, when a child is born with some type of physical limitation such as cerebral palsy or any other type of medical condition, the family tends to over protect him or her. Fortunately, I am an exception.

I am the oldest of three children and only girl, I was raised the same way as my brothers with no special treatment if I did something wrong I was punished. My parents’ friends used to tell them that I should not be punished but my parents didn’t pay any attention to their friends’ suggestions.  We were treated equally, always.  This has helped me become the person I am, regardless of what other people thought or said about me.

Love You. Love Me!

By Odeon Black

Sexuality abounds in the media, from scantily clad Calvin Klein models who seemed malnourish, to hundreds of bikini wearing women running towards a man spraying cologne on himself.   They are all beautiful, sexual, and sexy, they ooze pheromones and more to the point they sell products.  These ads are made so that you don’t want to look away, made to keep you enticed until your sold.  But what are you buying? A product or an image of what is perfect?  The truth is many times we don’t know what we are being sold.  But often it makes us feel like we bought the underline message, they are pretty and we are not.

We look in the mirror and see deficiencies, which are compounded by everyday negative comments and messages we receive from those around us.  Bombarded by stares of public and private disapproval we forget the day we stopped feeling beautiful.  The day a simple dress made her feel like a princess, or when a pair of shoes put him “on top of the world”.  To many of us with disabilities those memories are a distant fog.  It is sexuality, denied! It is beauty unreachable! Most of all, it is self-inflicted.  Like cutting into your skin every time you get depressed, until you no longer feel the knife, but the scars are clearly visible.

I have met them.  I hear their self-disgust and see every cut in their eyes.  Society, What has thou done?   They talk to me of feeling un-loved, hating their bodies, their looks and the hand they were dealt.  The screams of pain have been real and imagined, but the suffering is constant.  The new dress has lost it’s magic, and those shoes no longer shine.

Why?  Because we grew-up, watched too much television, and actually became the person most displeased by our looks.  We devalued our contributions and our sexuality and forgot what made us beautiful.   Someone told us that our dress was not pretty and our shoes were outdated.  They crammed their negative views into our special pleasures, and we let them.  To this day we cry because we miss them, because we let them.

My theme of sexuality and disability is usually spicy and upbeat and so we will end on an upbeat note.  First, it is time to take back what is yours, your beauty, sexiness, positivity and your ability to look in the mirror.  Time to love the imperfections, which have, become knives to your soul. It is truly time to tell the negative influences, including, media, mind and “friends”, to keep their comments to themselves.  So, make a date with yourself.  Do your favorite things, and fall in love all over again with the little girl who lit up a room with her smile.  Reach deep into the well of darkness and pullout your favorite shoes and wear them.  If by chance you run into someone who tells you how ugly your shoes or dress may be, tell him or her, Fuck You!

Getting It Right

About five months ago I was asked to blog on a website in Australia. So, I downloaded a clock onto my home page which would tell me the time there and another gadget to let me see what the daily weather was like. At times I publish blogs I’ve used on my own site with minor adjustments. I thought it would be very interesting to write on the blog in another country but I realized there might be some different perspectives once in a while.  There have not been any until my last blog entitled Patience and Persistence which reflected my harvesting a wild turkey the first since my disabling accident 11 years ago. Imagine my surprise when my latest post was introduced by the following two paragraphs written by the blog editor:

 Hi everyone, welcoming you to another blog from Rich Fabend. Just a side note we in no way encourage the use of guns or promote hunting or anything of the sort. In Australia there are tight rules and restrictions and definite no-nos about the use of guns. I in fact love turkeys as I think they are very fascinating creatures.  However I think that there is a great lesson and moral behind the words that Rich  has presented in his blog posts here, and that is about patience and adapting to change.
 … He lives in America and it is currently Hunting season there, thus causing the theme of his posts. But from his posts we can see that disability is a daily thing, however if we learn to live with it in our own way, it moves away from something hat runs our life to something that is part of our being.

When I first started writing about hunting I fully expected I would get responses from individuals who were uncomfortable with those actions.  I also thought any issues would originate in the US and I believed these blogs would be well accepted in Australia. I have absolutely no problem with the comments that were written. Personally, I believe the United States should have stricter gun laws. However, the more I thought about it the more I realized my own misperception of Australia had been formed from watching  movies like Crocodile Dundee, Australia, Quigley Down Under and the television exploits of Steve Irwin the Crocodile Hunter. Obviously, my concepts were inaccurate. I guess that’s the equivalent of people believing that New York State is one huge megalopolis resembling New York City.

While our views of other countries and cultures may be very limited, one thing is perfectly clear to me and that is that, as individuals with disabilities, we are a subculture of our own regardless of where we live in this world. We are brothers and sisters united by our struggle to deal with the profound challenges that confront us every day. I believe, in many ways, we have more in common with each other than we have with many of our able-bodied countrymen. When we communicate there is an unspoken acknowledgment of what our daily lives are like. We immediately understand what each of us is dealing with and feel no great need to explain it.

I orginally started my website www.handihelp.net so we could communicate with each other and more particularly share ideas, shortcuts and equipment that we have developed to reduce the frustrations we face daily. Why should an individual joining our subculture not be able to have ready access to the things that have already been developed which would improve their quality of life? I am speaking here primarily of equipment but I also feel strongly that we should share the mental processes, attitudes and beliefs that have allowed us to adjust to situations that life has chosen to place us in.

So first I should apologize to the people of Australia for the foolish beliefs I had about their country. More importantly, I think we of the world’s disabled community should make greater efforts to share our thoughts and information which will enable us to live more stress-free lives.

National Ad Campaign Promotes Common Sense by Using Humor: My Take

Ever since I became an individual with a disability one thing is sure, I am being labeled daily.  By people I know and those that I don’t.  I am stared at by strangers and can hear their wheels turning.  Their brain is going at hyper-speed to put me in a box and slap a “Label” on it.  They see a man in a power wheelchair with a service dog.  Sometimes, they see me driving my specially equipped van from my wheelchair.  Then other times they spy me at work or going to a meeting, the truth is I am hard to miss.  More importantly, I do not want to be missed!  I go through life (hopefully) dispelling one myth or another about people with disabilities.  That is why am so excited by a national ad campaign called “Think Beyond the Label,” launched this month, by the Chicago-based organization Health & Disability Advocates with 30 state vocational agencies and State Medicaid Infrastructure Grantees.  The funny, edgy $4 million campaign designed is designed to challenge attitudes about people with disabilities in the workplace.  This campaign is exactly what we need to educate employers and others about the destructiveness of “Labels”.  Because, it not only points out “shortcomings” which everyone has, but exploits the ridiculousness of pointing each one out.  The campaign basically says, “if you are labeling me-then I will label you”.

I am of the mind that people cannot help labeling others; because it helps them to place who they are in a given situation.  We are thought to label people and things since the day of our birth.  We have it ingrained in our brains that we “must” put people into a context.  We are hardwired as human beings to judge others, on appearance, verbal skills, dress, and conduct just to name a few.  You might say it is in our DNA to label everyone and everything in our purview.

Here are some examples of “Labels” I have had slapped on my back (Box)

The “Hero”, this is not necessarily a bad label (if you saved kids from burning building) unless one takes into account the context.  If you think I am a hero because as a person with a disability, I wake-up, go to work, and live my life, then you are wrong.  Wrong label, Wrong box! Labels like “Hero” can be destructive, when they purport to treat me different, while I am trying to be like everybody else.  In the workplace, this label is “killer” and not in a good way.  If an employer hires someone on account of them being perceived as a “Hero”, things not go so well.  This new employee is going to eventually have to do the job, if they cannot it may close a door for someone else.   The perception by the employer in this instance can have a rippling effect.

The “non-believer” a person in need of heavenly salvation.  Why else would I be in a wheelchair?  If I believed more, prayed more, and asked to be saved I would “get-up and walk”.  Yes, I have had someone say that to me.  The religious label is hard on those who take it to heart; it could be devastating on those who believe it.

The “pitiful person”, someone that everyone should feel sorry for. This is especially true in instances where other cultures are involved.  Also, when I travel.

The “beggar”, someone in need of money just waiting for a dime to drop on his lap.  First time it happened in Times Square, NY, I was sitting outside, Duane Read pharmacy in my penny loafers, dress pants and tie.  Then, a middle age woman walks by a puts a dollar on my lap.  I was dumbfounded!  Five seconds later, a “well dressed” man drop three dimes on my lap.  Holy crap! I have been turned into my “Label”.  This happens almost every time I am in the city.  The first time I had enough for a cup of coffee-really.

The “unable” , a person who does not by their mere appearance look like they can contribute anything to anyone.

These are just a few examples of labels people like myself muddle through on a daily basis.  There are probably hundreds or thousands which are thrust upon us as we navigate the waters of employment, health care, relationships, and just plain living.   People with disabilities boil in a cauldron of myth, lies, and innuendo as society continues “the labeling game”.  In reality, everyone does it to one extent or another.  However, when those being labeled are affected economically and socially there is a problem.  Not at all dissimilar to the way racial, ethnic, or religious groups were labeled; in some cases literally.  The bottom line is that the lost of participation by people with disabilities in the workplace and other areas is detrimental to the Nation.  The increase in employment and decrease of State and Federal benefits by individuals with disabilities can only improve our economic standing.

The campaign to educate employers through the use of humor is ingenious in the age of political correctness. Because, “Think Beyond the Label”, is about more than realizing how silly our views about certain people can be.  It is about the limitless boundary to which anyone (disabled or not) could be labeled.  In the end it does not matter if you are “footwear fumbled”, “keister deficient” or “vocally enthusiastic”.  What matters is the ability of each and every one of us to see the potential in others, and recognize our own internal biases.

For more information on this campaign visit: thinkbeyondthelabel.com

Javier Robles