When Disabilities Meet Codfish

by Javier Robles

Columbus and his mangy crew may have brought bacalao (salted codfish) to the New World but Carmen Robles perfected it in her bacalao y berenjena (codfish & eggplant) dish. This dish does not take long to prepare and is delicious. Give it a try!

Berenjena y Bacalao

Ingredients

2 pounds dried salted codfish (bacalao)
2 medium berenjena (eggplants)
3 large cloves of garlic or one tablespoon pure garlic powder
Manteca de achiote or 1½ packs of Sazon con achiote
Half can tomato sauce
One medium onion
Dash of pepper

One baking dish
One heavy duty large pan

Cut eggplant lengthwise and bake face down with a small bit of water at 350 degrees for about half hour or until tender. Peel eggplant and remove as many seeds as possible then cut into bite size pieces. Place to side.

Boil codfish 2 times to get rid of most of the salt. The first time, drop in codfish after water boils for 10 minutes. Then boil it again with fresh water for 20-25 minutes. This should remove most of the salt.

Break up codfish into small bite-size pieces and place in bowl with eggplant.

In hot pan place 2 tablespoons of manteca de achiote or, if this is not available, coat bottom of pan with olive oil and add a pack and a half Sazon Goya with achiote. Then add crushed garlic and chopped onion; cook until onion is translucent. Stir in eggplant and codfish and tomato sauce; mix well. Cook for about 10-15 minutes and serve with white rice.

In Latino cultures especially Puerto Rican we sometimes talk about being enbacalao. We are having a bad day or bad luck. Things just aren’t smelling right. That’s what I am blogging about this time; a bad mojo between people with disabilities and those who temporarily don’t have a disability. Let’s break down another barrier in hopes of creating a better world to live in.

You ever get the feeling that people are uncomfortable around you? That what you do and say makes them feel uneasy and sometimes embarrassed? We have all been there at one time or another — whether crossing that racial divide or meeting someone new. So how do you feel if you think you’re making people uncomfortable a great deal of the time?

I know I make my mother Carmen uncomfortable when I drive and she is my passenger. Here is a little glimpse into my drive with Carmen.

I wheel into my lift and push the buttons on it “up and in.” Once in the van I roll my wheelchair right in front of the steering wheel. My chair auto locks to the floor and I work the digital control pad to start and shift.

No sooner do I start my car than I hear Carmen, “Padre nuestro que estas en los cielos …” This praying goes on for a good 10 minutes at which point I begin to think: She does not seem too comfortable. She never gets very comfortable.

During Turnpike drives she likes to gently tap me. Why? “Just wanted to make sure you weren’t sleeping.” Holy crap! Why the heck would I be sleeping and driving?

If I listen to NPR she says, “Que es esa porqueria? Don’t you have Spanish stations?”

Honestly, no matter what you hear my driving is not that bad.

I know I make some people uncomfortable. More importantly I have come to believe that a little discomfort by someone else does not bother me a bit. In fact, it can be used as a “learning tool” for the “socially challenged.”

Why do I think I make people uncomfortable? you ask.

For readers of this blog who don’t know me, my presence can be a bit daunting at first. I am a hefty Puerto Rican in a motorized wheelchair and most of the time I travel with my service dog, Janus (to learn more about service dogs go to www.cci.org).

Needless to say many people who see me for the first time think one of a few things such as:

God this guy is so courageous.
Mira Juan, this guy in a wheelchair has a full-time job and you can’t even get a bagging job at Twin City.
Believe and you will walk again!
Holy crap shouldn’t this guy be home in a hospital bed?

People with disabilities are either heroes, non-believers, or sickly. It is our job to make categories and neat boxes we can fit groups of people into. In some cases these categories are developed by long-standing cultural beliefs and traditions, many which are alive and well in many of our countries.

I am here to crush your neat boxes and to kick your misconceptions right were it hurts. I want to rip traditions which claim that it is better to pity the cripple than empower the citizen with a disability. Traditions which thrive on a caste system of social inequality so damaging to the psyche, that many cannot bear the burden they have become. I am not only talking of Latinos but also of the “mainstream,” which profess ideological superiority on issues of equality, but fall short in practice.

Are you thinking Javier is being a little harsh? What’s he complaining about? He has handicapped parking.

I supposed it is a frustration that develops from the day one acquires a disability. It slowly builds and builds and builds then one day you either scream out the window or write this blog. There is a serious need to reevaluate the significance and value of people with disabilities. Not how they make us feel when they miraculously walk out of their wheelchair but how they make us feel when we know they will always be in a wheelchair. I am not discouraging hope, prayer or a belief in a higher power. What I am saying is that the first steps to improving our relationship with people with disabilities are acceptance and power sharing.

Acceptance of the person’s disability seems simple but it carries implications that challenge our traditional misconceptions. The ones no one knows about. The fear to approach someone with a disability, to talk with them and to offer friendship. Worse still, the fact that I am one car accident away from having a disability. Acceptance comes only when one forgets everything you never knew you learned.

So what about power-sharing? My hermanos y hermanas, we in the Latino/a community are only beginning to understand the importance of having a stake in this country’s future. Across the board it is our responsibility to offer every member of the community a portion of our progress. In reality, for people with disabilities it starts with access and ends with jobs. There is too little of either to go around. Moreover, when people such as myself do have access and jobs, we must contend with discrimination from all sectors top to bottom. Do not be fooled — success still has a price. While women have managed to some extent to break through the “glass ceiling,” people with disabilities who are working are buried under a “concrete ramp” pointed straight down. Insuring that Latinos with disabilities are part of our economic and political fabric strengthens us. It allows for growth and power-sharing.

Many of us understand what it’s like to feel like outsiders right within our own communities. That’s what it’s like every day for people with disabilities in this country. To be overlooked and undervalued causes a strong feeling of worthlessness. I — like many other people with disabilities — refuse to be put in a box and labeled for the convenience of others. Family members and friends of people with disabilities are the first line of education about the abilities and contributions that people with disabilities have and will continue to make.

In order to be inclusive we must re-examine ourselves and organizations as they relate to disability inclusion. Many of our leaders feel that it’s okay not to have a ramp, accessible bathrooms, or an inclusive attitude. However, empowerment and power-sharing begin at the basest level and sometimes that means getting people with disabilities into your front door. People with disabilities should not just be viewed as consumers or clients; they should be on their boards and making decisions.

No one wants to be enbacalao. Therefore, treat everyone as you would want to be treated

What Now for NJ DDS?

By Ed Heaton

Recently, I was reading the biography of George Steinbrenner, by Bill Madden. The more I read, the more familiar the character of Mr. Steinbrenner seemed to me. The ego, the incessant demands, the never admitting of a mistake, blaming either his manager, general manager or players on the field for his failures. George Steinbrenner actually fired someone once because it was raining.

After reading the book, I realized why Mr. Steinbrenner seemed so familiar to me. I had the unfortunate experience of working for the George Steinbrenner of NJDDS: Joseph Amoroso.

I would have probably never written this column except for the action of Mr. William Ditto, recently retired director of the Division of Disability Services. Mr. Ditto named Mr. Amoroso Acting Director of the Division. In so doing, he took a cold and turned it into influenza.

Besides Mr. Amoroso’s questionable people skills, there are questions surrounding him concerning figures and facts. According to a document written by Mr. Ditto in December 2008, DDS’s Information and Referral Area (led by Mr. Amoroso) receives 1,700 calls per month. What Mr. Ditto did not state was what types of calls are being received. How many of the 1,700 calls are new requests for information, repeat calls, or follow-up calls?  Both Mr. Ditto and Mr. Amoroso like to point to the amount of calls received as an indicator of the success of the I & R Area. Without outcomes attached to the calls, the number of calls received is not a true indicator of the effectiveness of the I & R Area. In fact, without a report of outcomes, an evaluation of the I & R Area’s effectiveness in assisting consumers cannot even be determined.

While interpretation of data can be debated, facts cannot. In my June column, I noted that Mr. Amoroso was found guilty of a discrimination complaint by the Chief of Staff of the Department of Human Services. Since then, I have discovered that the Merit System Board denied Mr. Amoroso’s appeal of that complaint. The thing is, if Mr. Amoroso had admitted he was wrong and just accepted his punishment, I would have never found out about the complaint. Instead, by always needing to be right, Mr. Amoroso filed an appeal, which became a matter of public record. It also bothers me that a person found guilty of a discrimination complaint, not once, but twice (because of the review), was named Acting Director.  Given this, wasn’t there anyone better qualified?

A search committee has been formed to find Mr. Ditto’s replacement. In his final column in the Able Newspaper of August 6. 2010, Mr. Ditto states, “We have recruited several people from outside of state government to serve on the committee to make it as fair and impartial as possible.” What Mr. Ditto does not mention, by limiting his comment to “state government”, is that all members of the committee that I know of are directly connected to government in one way or another: either county, academic, or retired state government employees. There is no one from the disabled community or the non-profit provider community to assist this committee in making their choices. My recommendation would be to name a CIL director (Eileen Goff) and a person from an advocacy organization (Lowell Ayre), to the committee to expand its outreach.  It is my sincere hope that a replacement for Mr. Ditto is named quickly.

The people I feel most sorry for are the current employees of DDS. I have served my time in hell. Theirs is just beginning.

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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.

Christopher Reeve, Inspiration and Success

Did you know, CNN is doing a story on Parenting with Disabilities. I’m sure it’s very difficult for many of us to feel comfortable opening up and sharing ou stories. Although I found the switch to give me the passion to come forth and become some what of an exhibitionist , it’s not always easy. Well I also noticed while watching television , shows aren’t always delivering content involving issues, actors or athletes with disabilities. I wonder to myself sometimes since my disability I watch more television. I wonder if any of you experienced this as well and if so I asked myself, if television is mostly viewed by individuals with disabilities. If this theory is true then why aren’t we seeing ourselves or representations of our real aspiration on film and television.

Ratings are made up of human viewers, if no one is watching , industry is dropping. My comrade Larry the Rolling Filmmaker is a big advocate on putting more actors with disabilities working in Hollywood, I’m sure seeing this would give many more inspiration as well. The few friends I made that are aspiring to break down barriers as well as fulfill their dreams are continuing to pursue their passions. I’m not a famous actor, I didn’t grow up in Hollywood and I don’t have famous friends but I still see those who are struggling within their own careers. I didn’t truly become more of a name among my peers on my own. It took everyone I met on Care Cure Community to help me get to this point where I’m taking a stand on this movement for supporting each other.

It’s been my statement that Christopher Reeve is my inspiration, I learned more about spinal cord injury because of him. Not just learning about the research, politics and technology but collaborating and helping others. Although it’s very important we support each other for the things we need to live we also need to enjoy life. We are still human despite our disability but sometimes we feel detached from the world considered normal. I’m assuming we possibly make up a very large percentage of viewers when it comes to television ratings. I’m sure someone would enjoy researching this idea but I know the many friends I chat with online many are stuck at home. That’s no luxury like some may think. I had a few people say to me I live like a King having people cater to my needs. If being stuck in bed and can’t get up and having to wait for someone to wake up to help me eat is living like a King, someone please dethrone me.

Back to the topic about what we see on TV. I would like to finally see a network about disability, they can call it TDC The Disability Channel, not an unique name but something to get us relative television. I can be conceited saying this but that’s just another theory, I bet if Christopher was here we had a television show maybe a network by now. Christopher seemed to have the super powers to be forever Superman and he broke more barriers then most actors with disabilities for disability, not only for himself. I feel beyond whatever reason others may feel they can’t get ahead , many times when you use your talents or power for others you succeed a lot more. That was Christopher, no matter what ever anyone thinks, he didn’t use his power for self gratification he used his power to help all of us.

So finally what I’m trying to say, is we need to try to support bringing disability in the media. If there’s no ratings there’s no sponsors. CNN called me to be part in a promotion about Parents with Disabilities. The show has nothing to do with me but I will support, watch, blog, bulletin or send out a newsletter. No matter weather you are a disabled parent or not, post , watch, add a video of your support. The key to balancing all these TV shows we say are crap yet get the most air time is going to need the same attention. So please pass on this link and encourage others to if not get involved, read the synopsis.

http://www.facebook.com/l/9ed79;www.ireport.com/ir-topic-stories.jspa?topicId=432759&hpt=Sbin

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