If I Need Help I’ll Ask

The group on the top of Ampersand

How ironic that I now find myself in the same situation with people often offering to help me do whatever it is I’m trying to do. It’s been my observation almost everyone’s gestures are well intended. Most want to convey their empathy, but sometimes I have to remind myself of that. They don’t realize their effort could be misinterpreted as, “I don’t think you can do things for yourself”; for example, when a waitress asks my wife what I would like to order, implying I am totally incapacitated by my disability.

When I talk to a group I always drop a piece of paper on the floor. Ninety-nine percent of the time someone moves to pick it up for me. My wife usually intercedes to stop them. When I’m ready, I pick it up using my paper-pick-up tool. I drop a bottle of soda, a piece of a jigsaw puzzle, a book and one by one pick them up; in public schools the audience usually applauds. I tell them these are not tricks but rather ways that I have developed to function independently. I like to say disability does not mean inability. People need to understand that members of the disabled community are not totally helpless. And members of the disabled community need to remember people offering to help only have the best of intentions. So remember to tell people, “If I need help I’ll ask.”

Sit Awhile In My Shoes

Sitting in my shoes

I had just finished speaking to a class of elementary students and was leaving the school when a young child came up to me and said “It must be really cool being in that chair”. I was at a wedding reception once when a middle age woman said she thought the chair was pretty neat. She obviously had had too much to drink so I ignored her remark. I know an institution of higher learning that has students spend a day in a manual chair in order to get some sense of what it is like to be so confined. An organization I belonged to had a fundraising dinner to get money to purchase handcycles. When I arrived children and adults were riding handcycles in the street laughing and fooling around.  When they hit the curb they just stood up and moved the bike. I went berserk. I dropped off the board of directors the next day. A psychiatrist I was seeing after my accident said to me once he wished he could trade places with me for a month. He believed he could gain an understanding of what it is like to be in a wheelchair. I know many people feel awkward around individuals with disabilities, but come-on, except for the elementary student, what were the others thinking? If you know your time in the chair is limited there is no way you can understand what it is like. How can an able-bodied person ever understand what it is really like to be disabled?

Living with a disability is not cool, nor is it a game that can played at. It can’t be understood by spending a few hours or a few days in a wheelchair. You must live it to truly understand it. How do I explain to someone the overpowering feeling I get to move my legs? How do I convey the “impulse- like” electrical charges running down my legs telling me they want to move? I had my son cross my legs once when this was going on but it made no difference. How do you explain this to anyone when you are not supposed to have any feeling below your arms; or that I feel so cold most of the time that I wear a knit hat in my house? I can’t even explain that to myself. One of the worst times I experienced was one night, (that’s when my bogymen come out) when the bed motor that raises my torso was not working. I woke up early one morning and had to lie in bed for 5 hours waiting for morning not being able to move or access the things on my hospital table. I just about went crazy. We live in a different world that no one can fathom unless they live there too. Maybe I’m being too harsh, but this is my perception.

A Failure SYSTEM

I need to find a new place to live as soon as possible.  I am living with a relative but I can’t stay for a long period.

For years I have been receiving services from the Division of Development Disabilities in New Jersey (DDD). I contact DDD regarding to this problem and I asked them for help.  Unfortunately the process is taking too long.

I mailed the following letter that to my case manager from DDD back in the summer.  They were aware of the situation before the letter was written.

On September 1 20010, my parents will be moving back to the Dominican Republic (DR). Once they leave I will not have a place to stay.   Since the DR lack of resources for people with disabilities to attend school I can’t move back with my parents.   I also have student loans to pay. Financial aid doesn’t cover my entire tuition.

Since I moved to New Jersey at age fifteen, I have accomplished a lot of goals. Months after I moved, I was placed in Cerebral Palsy Center in Clifton.  The major focus of the school was to teach the students independent skills how to prepare a meal, clean a room, count money and so on.

At that time, my mother and I didn’t have any idea of what school I should go to. I was evaluated by the child study team of the district. According to them I should attend a special school.

Later on, my mother and I got involved in an advocacy group for parents with kids with disabilities. Five years later, thanks to my mother and the parents’ advocacy group we found out that I was placed in the wrong school. I transferred to a regular high school.

But my age was my biggest obstacle. I was already 20 years old and the limit age is 21.  We requested permission to the board education

In high school I had the opportunity to improve academically. Since the freshman year most of my reports cards were “As” and “Bs.” I graduated from high school on the honor roll.

After graduation I attended Passaic County College. I started taking ESL courses English As a Second Language because my English was a little poor. I had difficulties with class schedule, homework and I felt frustrated as a result, I dropped out of college.

Then I tried to find a job. The only job that I found was working in a workshop for people with disabilities but I didn’t feel happy to be working there. I wanted to do other types of work such as computer data, receptionist or file clerk. I was told that I didn’t qualify for that type of job. A year later I stopped working at the workshop.

I went back to college to complete the courses that I needed it. I took one or two courses per semester. One of my English professors became my mentor. Thanks to my family and his support I was able to success in college. While I was there my mentor encouraged to write personal essays, poems, articles and doing translations from Spanish to English. I didn’t know that my writing skills is strong. I also completed the ESL Program and took college level courses.

On May 2009, I graduated with an associate in liberal arts. On September first I transfered to William Paterson University. Now I am communication major. Also last year, I worked as intern for the state of New Jersey.

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