What Self Awareness for Disabled Americans means to me and why!
By Rayne

Disabled children tend to lead extremely, sheltered lives. Some children, depending on the severity of their specific disability, spend an over abundance, of their childhood, in various Children's Hospitals, across the country. Parents with said disabled children, unfortunately, may face a child's, traumatizing, short life expectancy. A child's health can be time consuming, medically demanding, and mentally exhausting. Most parents though, have an unconditional love and devotion. They'll do anything and everything, at any cost, to keep to their child's spirits high, so the child will continue believing, "Life is worth fighting for!" Parents of disabled children also face additional concerning issues, such as the reality of "Kids can be cruel!" They, as loved ones, want to protect their child from a cruel, social society. Unfortunately, lack of acceptance among peers isn't uncommon, and can be a contributing cause of withdrawing and/or rejection from "normal" childhood activities. Some children with disabilities grow up with low self-esteem due to, the constant ridicule by others. Usually, when "able bodied" children, tease or make fun of a disabled child, it is based on physical appearance, or "because they're different!" A "cruel child" may have self-esteem issues. Subsequently, feeling the need to pick on others in order to make themselves feel better, and/or to gain attention and/or popularity among peers. Children with disabilities are automatic targets because they're different. I don't believe children are intentionally cruel, I believe they lack knowledge of the 5 W's in disabilities.

1) Who can be disabled?

2) What is a disability?

3) When do people become disabled?

4) Where are the disabilities?

And 5) Why do people have disabilities?

Having been raised with a disabled sibling, my 27 years of life experience, has helped me to realize and understand why disabled children tend to be overprotected and generally lack life's typical "Growing up experiences." Which brings me to why I feel we need a program that offers self-awareness, raises self-esteem, creates self-confidence, is physically challenging, educates and develops understanding, is inspirational and rewarding, and offers social interaction.

-Rayne-

Date: 6/29/99
Rayne interviews Frank and Cries

Rayne: What type of disability do you have?
Frank: Spinal Bifida with Multiple Medical Complications.

Rayne: Can you give me a brief description of your disability.
Frank: ITS A BIRTH DEFECT THAT CAUSES THE SPINAL CORD TO NOT FULLY DEVELOP.

Rayne: Growing up how did children react to you being in a wheelchair?
Frank: A lot of younger kids are very curious. Like, when I use To go to the grocery store with my mom, or grandma, the kids would always want to walk up to me and ask questions. Their mothers would always tell them to hush and walk away.

Rayne: How did it affect your social life with able bodied children?
Frank: My parents have always raised me to do as much as I can for myself. I did the same things as other children, I just found different ways to do them.

Rayne: Did you have any Self-esteem issues as a child, that you feel can be contributed to your disability?
Frank: I was lucky enough to be born with my disability. I didn't know any different until I was eighteen when my health got worse. I now have a trach and I'm on a vent. I only have the use of one arm since this happened. I have become kind of self-conscious and borderline suicidal. To this day, I still have these issues I just thank God to have a loving family to stay by my side.

Rayne: How do you feel about the program Self Awareness for Disabled Americans?
Frank: Although I've not seen this program in progress yet, it is a beautiful idea. I am happy to be apart of it. I only wish there was a program like this when I was growing up.

Date: 6/21/99 3:36:59 PM Pacific Daylight Time
Rayne interviews Joe

This is Joe and Nissan (his canign companion) he recently graduated from Cal State Fullerton with a Bachelors Degree his email is redwheeler@aol.com

I wanted to show you a picture of Joe on his graduation day..... He received a standing ovation from all who attended..... I feel Joe is a positive role model. He should be considered a motivational influence, and an inspiration to all.

Rayne: What type of disability do you have?
Joe: Muscular Dystrophy

Rayne: Can you give me a brief description of your disability:
Joe: I have full sensation in my body but most of my muscles don't work. As a child I had full use of my upper torso, and have gotten progressively worse as time goes by. I have a Trach and use a ventilator at night .

Rayne: Describe how society in general reacts to someone with disabilities?
Joe: It's sad to say but most people see the wheelchair not the person inside. Most people are surprised that we are intelligent and have the same needs as other people.

Rayne: Growing up how did children react to you being in a wheelchair?
Joe: The nice thing about children is their openness. Most kids treated me the same as everyone else.

Rayne: How did it affect your social life with able bodied children?
Joe:The majority of my friends were able body.

Rayne: Did you have any Self-esteem issues as a child, that you feel can be contributed to your disability?
Joe: Most problems I had growing up were with my family, my father never really showed much emotion to myself or my half siblings. I have a half brother and two half sisters. We all experienced pretty much the same things. Not until the last few years have I gained the respect of my parents.

Rayne: How do you feel about the program Self Awareness for Disabled Americans?
Joe: I think it's a worthwhile project that needs exposure.

After hearing what happened, Joe sent me this letter and I would like to share it with you.....

Subj: Re: Rayne
Date: 7/1/99 6:39:34 PM Pacific Daylight Time
From: Redwheeler
To: Rain412

I first met Rayne several years ago, I came into a unfamiliar establishment and she immediately came over and introduced herself. This was something new to me, see I'm usually the person that has to take the initiative because of my disability. She has a very caring heart and the drive to do something positive for persons with disabilities. We are familiar with Jerry Lewis and others like him using their celebrity status to raise money for research and equipment for various organizations. One aspect they seem to forget about are awareness issues, as well as social stigma of being different. Rayne doesn't accept the norm and has pioneered a worthwhile effort to change the status quo. Its people like her that give myself a reason to strive forward and not accept no for an answer.

I was told I would never see 18 years of age. I'm now 30 and healthier and happier than I have been all my life. I was told that I would never accomplish anything in this world that would amount to anything productive. I just graduated with my bachelor's degree in American Studies from California State University of Fullerton. I was told I would never live away from my parents unless it was in an institution. I'm now living my second year in my OWN apartment and also have my OWN vehicle. The only thing missing from the all American dream is someone special to share my life with, and I'm confident she is out there somewhere.

People like Rayne are rare, they see the person not the wheelchair or disability. Its programs like this one that creates awareness to those that don't know or understand that we aren't that much different than anyone else. With events like Curveball '99, people will become aware and hopefully treat people with disabilities with newfound understanding. To close this I just have one additional request, and that is next time you meet someone with a disability, meet the person not the disability

This is another email I received...
Subj: Re: tell me more!
Date: 6/29/99 10:21:55 AM Pacific Daylight Time
From: RJones317
To: Rain412

I'm a c 5-6 quad 13 yrs post ---- your event sounds exciting -- I live in mi. the trip would be to costly, because I'm only on SSI low income. I have attended other fund raisers in Ann Arbor, MI they grant money for persons with low income called scholarships Ann Arbor Center for Independent Living. I'm a peer counselor I would love to be there.... Have you any you any grants for me and my aide to travel there? It's a powerful thing you are doing, and I applaud you!

thx in advance
R Jones

Why Curveball is not tax deductable?

I feel honesty is the best policy. I've consulted with an attorney about options regarding Self Awareness for Disabled Americans for example, whether it should be Foundation, organization, Inc., etc. I was shocked to learn the amount of money one has to pay to be considered a foundation and receive nonprofit status... The funding for the event Curveball "99" so far has come 100% out of my own pocket. I simply did not have the funding to pay for a status and my focus is on the program and the number of children I can sponsor. This program means a great deal to me, on a personal level. Is this a charitable cause, YES it is? Can I give you a tax-deductible receipt, no I cannot? To sum it up, I wanted to be upfront about not having nonprofit status but I wanted to be clear as to why. The program has an incredible amount of growth potential and I didn't want people to turn their backs due to "Lack of status".

-Rayne-