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from Spring 97 issue
by Enedelia Maldonado, Corpus Christi
Editor's Note: I want to thank Enedelia for continuing to contribute to the newsletter even though her role has changed recently. Enedelia is leaving her job at Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) to devote more of her time to her family. We wish her the best and hope she continues to share her thoughts with us.
I am the mother of a son with disabilities. My son was born with Down's Syndrome, Tetralogy of Fallot with Atrial Septal Defect and a dense cataract in his left eye. Since then he has undergone surgery after surgery on his Eustachian tubes and has been hospitalized many times. He has never received services from social security due to our income and now that he is eligible to receive vocational rehabilitation services through the Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) those services are being threatened. I can't begin to tell you how upset that makes me.
For the first time in his life he is receiving help that will prepare him for the near future when he will, hopefully, become a productive member of society. I would like my son to have the opportunity to work and feel proud of himself instead of being made to feel like a third-rate citizen. I would like for him to feel that because he is working and paying taxes, he has the right to go anywhere and purchase anything he wants.
As you may know on September 19, 1995, the 105th Congress began to debate the worthiness and continued existence of vocational rehabilitation services. During the debate the Honorable Bill Gooding,(R-Penn. and Chair of the Economic/Education Committee) made a statement that, in my opinion, was sarcastic and very derogatory. He stated that there were 2 million people with disabilities who were receiving vocational rehabilitation services. Of that number he noted that only 200,000 cases were being closed as successfully rehabilitated (employed for 60 days). He went on to say "60 days, BIG DEAL!" He seemed to think that a 71% success rate was no "big deal," that they didn't count because there were 29% that he considered failures. I understand that some senators feel that vocational rehabilitation is a big failure, that it is "no big deal" because the person only works for 60 days before his case is closed. I understand that the legislators criticize the fact that people with disabilities jump from one job to another and see that as another failure. But tell me, nowadays, how many citizens will keep their first job for the rest of their lives? And if they don't will they be considered failures, too?
Let me tell you about the "big deal" of working 60 days. One day a young man wakes up and realizes that today is the first day of a paying job. He realizes that he is a big man and will work just like the rest of his family. His teachers and counselors have trained him for this day for years. He gets the clothes that he prepared the night before and gets ready. He hurriedly eats his breakfast for fear that he will miss his bus and grabs his lunch bag on his way out. His dad proudly pats him on the back and wishes him a good day. His mother hides tears of joy and fear. She worries what his day will be like and how he will be received by others. The bus arrives and whisks him away.
At work, he is observant, wanting to do everything that the other workers are doing so as not to seem different. He remembers he is supposed to be courteous and keep busy. A few workers say "Hi!" and make small talk during his break. He is happy. To him the day goes by quickly. Tomorrow he will be back and he has so much to share with his mom and dad at supper. He tells his counselor that he can't wait until payday so that he can buy some neat clothes like those his coworkers wear and maybe some day go to the mall or the movies with them. Maybe tomorrow he will get invited to go eat with them.
Finally it's payday and his spirits soar, for he is "one of them." His counselor, teachers and parents have been working with him on budgeting. He proudly holds his first checkbook. He now belongs to the tax paying elite. He is not just a charity case anymore. He is talking to other people on a daily basis, living and enjoying life instead of letting life go by, hour by slow-ticking hour. His parents notice that he is more active and talkative since he started working. He actually has friends. When they go out, people who they don't know call out to him and stop to chat. He has even gone out with his friends. Life is good!
Not all jobs end after the sixty-day period. There are some people who stay with the same job for years, are very successful at what they do, and are promoted. However, there are those that don't for various reasons, but isn't that typical of the general population? A study was conducted recently on the work habits and trends of the "average" worker, and it found that a person will normally hold ten jobs in his lifetime. Yet a person with disabilities is expected to hold one job for the rest of his life or be seen as a failure. He must then go back to the social security check and wait hour after dreary hour because somebody decided that 60 days was no "big deal", that vocational rehabilitation is a big failure!
I ask you, a failure for whom? For the people with disabilities who need these opportunities and the hope that these opportunities will develop into something permanent if the employer will only give them a chance to show that they are capable? Or is it a failure for the parents and loved ones of the people with disabilities who are given that opportunity?
How much is a person with disabilities life worth? To me it is worth a million dollars to think that my son will be able to take advantage of this opportunity. It is worth a million dollars to see my son walking with confidence, greeting people, and shaking their hands. These people have come to know him as a responsible young man and like him because he has worked side-by-side with them. If he doesn't keep the first job, I don't consider it a failure because he has touched other people. They now know more about people with disabilities and are hopefully more accepting of them.
I feel that investing in people is so much more productive than investing in their destruction. Yes, we must curtail the government's expenditures, but there are ways that we can do that other than by giving up on our own. There are millions of dollars that are being spent on projects, such as studying the work habits of ant colonies or which catsup is the thickest; subsidizing tobacco growers; spending millions on Congressional "investigations" that take us nowhere and give us nothing in return. Why can't we spend on developing good work habits for our loved ones with disabilities?
I say to you senators and representatives and neighbors, look at who you are, how you live, where you work, how you play and spend your money. How can you take away my son's opportunity to try to achieve even one-hundredth of what you have. I challenge you to live like my son for one month and then tell him he is a failure. You explain to him why we can't afford to spend another dollar on his rehabilitation.
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from Spring 97 issue