-Interview with Tony Coelho-

We're very excited to present our guest, Tony Coelho, Chairman of the President's Committee on Employment of People with Disabilities. We submitted your questions to Chairman Coelho and below you will find a selection of his replies. Take a moment to review some of Chairman Coelho's speeches, particularly this inspiring one presented to the Colorado Business Leadership Network. You won't want to miss his story in this speech, about his diagnosis with epilepsy and the reactions that resulted in a frightened young man forced to face the future in a world where no one wanted him. I hope that everyone will take a few moments to read about our guest, and then read this interview. We have so much to learn, so many changes to help implement, and so much truth to pass on to others.

Question: Mr. Coehlo, I understand you have epilepsy. There are many of us with epilepsy and we're thrilled that you are here to talk with us. Our goal is to help educate others about disabilities and provide support for those who are dealing with disabilities, their family members and friends. Our group is growing and expanding with websites, chat groups, bulletin board topics and newsletters. Your participation online will add tremendously to that awareness and support. Do you mind talking about your epilepsy? Can you share your personal experience dealing with this in the workplace? TONY COELHO: I am always glad to talk about my personal experiences as a person living with epilepsy. At the age of 21, when I was diagnosed with epilepsy, I was turned away from a Jesuit seminary, lost my driver's license, and was labeled an insurance risk. Everywhere I applied for a job, I was rejected after checking the box asking if I had epilepsy. As a Congressman, I was most proud to introduce the Americans with Disabilities Act into the House of Representatives because I didn't want anyone else to experience the discrimination and pain that I had. Question: Mr. Coelho, With your appointment by President Clinton, on the Activities, Roles, and Capabilities of The Unites States Intelligence Community, and Chairman of Tanknology, etc. etc. with such a schedule! HOW do you find the time? And what is "Tanknology"? Is it a group in what we have come to call, The Think Tank, to come up with ideas? TONY COELHO: I appreciate your comments. Many people ask when I have the time. Actually, it's because I only sleep four to five hours a night and I've done that since my teenage years. "Tanknology" involves a number of businesses, the primary one being a company known as TEI, Inc., which is publicly-held and deals with leaks in underground tanks. HOST: Oh, were WE off course here. I would have guest the same as the member, but probably because of the direction our information and our discussions go here in our well-being area. Take the 'n' out and we can start our own Tankology group online? Question: Your fabulous speech we read on the internet (http://www.pcepd.gov/chair/speech/colbln.htm) credits Bob Hope for giving you Hope to run for Congress. Had you always been friends? And what words made the difference? TONY COELHO: A mutual friend introduced Bob Hope and me. He was the inspiration that turned my life around. He told me that I did, indeed, have a ministry but there are all kinds of ministries -- outside as well as inside the church. In the truest sense of the word, "politics," properly pursued, is one of the greatest ministries available. Question: If you had the chance to be stuck in an elevator for two hours with one person who would listen to your message, who would it be? And what would you say? TONY COELHO: The Pope. I would tell him that those of us with epilepsy are not possessed by the devil. The seizures that the church feels would interfere with our ability to be priests, to perform the mass, are no different than if someone has a heart attack, stroke, diabetes, or any of many, many other conditions. While I had him, I might also talk to him about letting married men into the priesthood because then I would be back knocking at his door. HOST: I couldn't agree more. There is no reason that you could not handle the responsibilities of priesthood. In fact, I suspect that you would have brought many added qualities and insights to the vocation. Also, it is obvious that if more people with disabilities held positions and jobs in the public eye, we would understand and respect disabilities more and be prepared for everything related to disabilities. How many of us have never seen a seizure, a diabetic reaction, a stroke or heart attack, and would we know if and how we were supposed to help? If you do get stuck in an elevator with Him, perhaps you could bring our list of requests with you, as well? Question: Is there a way to find out our housing laws for people with disabilities in the state of Massachusetts? Are all state laws the same? TONY COELHO: State laws are different. Your best source of information may be the Massachusetts Governor's Commission on Employment of People with Disabilities, which you can reach at: Department of Employment and Training Policy Office 19 Stanford Street, 4th Floor Boston, MA 02114 (617) 626-5180 VOICE TELEPHONE (617) 727-8014 FAX Question: What has been one of your biggest obstacles you've had to climb over in order to get the word out about employment, housing and accessibility? TONY COELHO: Perhaps the greatest hurdle is fear -- a major component of prejudice and discrimination. If we could eliminate the fear of the unknown held by many, even some of our own loved ones, it would be a major step toward solving a number of our problems. Question: Chairman Coelho, Many of us find transportation a huge problem. Should we be asking companies to set aside transportation? Or should we accept this "no-no" and move on? TONY COELHO: I never accept "no-no" and I don't think you should. Transportation is a key to our independence, to our ability to have a job, and something for which we should always fight. When drafting and working on the Americans with Disabilities Act, the transportation industry was the biggest obstacle. In order to get the legislation through, we had to make "accommodations" for the transportation industry. Question: On a very light note Chairman Coelho: Watched an interview with you on Television where you said you had a GREAT spaghetti recipe! Are you sharing? TONY COELHO: You must have misunderstood. I wish I could cook. I can barely boil water and make popcorn. If you have a good recipe, please share it with me, and please spell it out in simple, plain terms. Question: The Staff that you work with... have they ever expressed fear of your epilepsy? Do you educate all in seizure problems, even before anything goes wrong? TONY COELHO: No, my staff have never expressed fear of my epilepsy because I'm so open about it that everyone knows prior to joining me. I share with them a copy of "Tony Coelho Talks About Epilepsy: The Epilepsy Fund," an educational video that I did for the Epilepsy Foundation of America. Question: I am a disabled woman that has a rare disease called Osteogenesis Imperfecta & I am interested in hearing about the affordable housing solutions. I'd like to get my own house but they want too much to put down on a house and I don't have it. Thank you. Becky /Minnesota TONY COELHO: I am disappointed, but probably not surprised, by your question. I will check with EFA headquarters to see if there is anything that we can do. Question: Bipolar II, relatively well-managed with Klonapin and Prozac with periodic use of Ritalin or Xanax as indicated. College Degree and above average IQ. Well educated in Bipolar disorder. When and how does such a person disclose this information in seeking employment after having been on disability but needs, and is capable of, meaningful productivity? TONY COELHO: I don't believe in wearing a neon sign that says, "I have epilepsy." However, I do feel that it is important not to mislead a potential employer. Your question comes down to a judgment call -- how much you need to say and how to say it. In general, though, focus on your ability to do a job, rather than on your disability. Question: With your stunning report, "Out Of The Shadows," does the group which originally met in Switzerland still meet, tackling stigmas of all disabilities? Also, wondering if you have any speeches coming up in Southern California? TONY COELHO: I provided a statement on videotape for the Global Campaign Against Epilepsy, which took place in Switzerland. I delivered "Out of the Shadows - A Global Campaign Against Epilepsy" in Ireland during a symposium of the 22nd Epilepsy International Congress this past July. I'm not sure of future dates for speaking engagements in southern California, specifically, but thanks so much for your interest. Question: We have a son with epilepsy and Tourettes syndrome. Getting through grade school and high school has been a challenge in terms of accommodations, teacher support and respect for his disabilities. As we look ahead to college (in one more year) and begin research, it appears that colleges have a better handle on accommodations. I see several with special services. Why is it that colleges are better equipped and more willing to handle disabilities than grade schools and high schools, when the child's potential is being nurtured and views are being formed? Some don't make it to college and many more would if given the help. What are your views and thoughts? TONY COELHO: You make an excellent point and ask exactly the right question. Young children in their K-12 years learn the most. Wouldn't it be nice if our society recognized that this is true for those of us with disabilities? We need to provide opportunities for these young children to learn, but more importantly, to have confidence in themselves so that they can participate like their colleagues in school activities and feel that they, too, are part of the system. It's taken a long time to work on this whole idea. Now, with aggressive national leadership and attention focused, I am confident that we will start to see some results. Question: A Prodigy friend, (genius) with her computer mouse, found the report Fact Sheet # N166 dated June 1997 from WHO. Any progress worldwide, Mr. Coelho? As an epileptic, I hope so. Although I don't travel to those countries, we do give foreign aide to many. Any comments? TONY COELHO: I appreciate your question. The mere fact that countries all over the world have decided to focus on problems and misconceptions of epilepsy means that we are making progress. This is a worldwide campaign to raise the level of awareness of possible maintenance and assistance that can be provided to those of us with disabilities. Some of the problems that were individually brought to my attention at a recent Epilepsy International Congress would make your heart break because in some areas of the world, an epileptic is considered an outcast. But complaining doesn't help. Educating aggressively is the only thing that does. That's what we're trying to do. Question: Chairman Coelho, I take computer classes at a small storefront business. There are two of us in wheelchairs. The owner is fabulous and has made some changes to accommodate us. She has even talked to me about helping out part time with the phones and some paperwork at the front desk while she teaches. My problem is the bathroom! It is too small. What a big thing to ask her to change. (I also am pretty sure she rents the space) Are there any programs to help small business owners financially to make such big changes? TONY COELHO: I recognize by your statement and question your sensitivity toward a small businesswoman who wants to be helpful. It's that sensitivity shown by those of us with disabilities that will make us succeed. Small businesses that in the previous year earned a maximum of $1 million in revenue or had 30 of fewer full-time employees are eligible for the Small Business Tax Credit (IRS Code Section 44, Disabled Access Credit). All businesses are eligible for an annual deduction for expenses incurred to remove physical, structural, and transportation barriers for persons with disabilities at the workplace (Architectural/Transportation Tax Deduction: IRS Code Section 190, Barrier Removal). The Work Opportunity Tax Credit provides a tax credit for employers who hire certain targeted low-income groups, including referrals from vocational rehabilitation. The President's Committee on Employment of People with Disabilities has a "Tax Incentives for Business" fact sheet that is available at our Web site (www.pcepd.gov). Question: Many employers are STILL unaware of ADA compliance. What do you suggest we do when faced with an application that has a "check-off box" of illnesses and disorders? (i.e "Have you ever had......Epilepsy or any other Nervous Condition or FITS?" ). Yes, THAT word is still out there! Our "private" information is EVERYWHERE, as you know. Credit reports include medical, legal and OTHER matters not related to credit-worthiness. This "old banker" has read a lot of these reports & objected to them decades ago. Fact is, the information is ALREADY OUT THERE...for a price! How will the NEW law affect the "cats that are already out of the bag?" Personally, I always "confess?" to my "seizure disorder" UP FRONT! Once when I did not, I was accused of lying.....even though no medical question was asked! Thank you in advance & please ask the EFA to take a more PUBLIC presence! Wishing you health & success. TONY COELHO: Under the Americans with Disabilities Act, it is illegal to ask disability-related questions on a job application. When I drafted the ADA, I wanted those of us with disabilities to have the same rights as others who might be discriminated against -- no more but no less. The Equal Employment Opportunity Commission enforces Title I of the law. For more information or to file a complaint, call (800) 669-4000 (voice) or (800) 800-3302 (TDD). Question: As Celiacs, we would like to see someone in government address the issue of Food Labeling. At the present time often rather vague terms are used in labeling ingredients such as Modified Food Starch. For a Celiac the source of the starch is of great concern because if it is made of one of the grains that are toxic to us, we can become quite ill, HVP and TVP are other types of vague ingredients, both are vegetable protein but what is the source? Grocery shopping for a Celiac is a rather challenging event, every label MUST be read, companies must be contacted, any unrecognizable ingredient is suspect so that what should be a routine task can become monumental. In addition at times companies will change the source of ingredients but use *older* labels until newer ones are printed, this can leave a Celiac feeling physically ill without a way to pinpoint the cause of his/her symptoms. There are countries abroad that are very specific in label laws even requiring companies to be a stamp or notice on the label when an item is SUITABLE FOR A GLUTEN FREE DIET...this would be a real godsend to the Celiac Community in the US. Thank you in advance for your time and attention. TONY COELHO: I believe in food labeling, too. I suggest calling the Office of Food Labeling, Center for Food Safety and Applied Nutrition, at (202) 205-4561 Question: Chairman Coelho: During your years in office in Washington, as a Representative, and now heading a committee for President Clinton, and pumping up the Business Man's Network so well in an effort to get employers to hire the disabled, not to just sit and answer the phone, as you stated....most of us face an employer who rattles Higher Workmen Comp rates in our faces. Comment on this? Did it happen to you? TONY COELHO: It never happened to me personally, but I resent the fact that anyone would do that because insurance rates are based solely on the relative hazards of the operation and the company's accident experience. The idea that hiring people with disabilities increases worker's compensation rates is a myth. Surveys conducted by E.I. du Pont de Nemours and Company in 1958, 1973, 1981 and 1990 have shown that employees with disabilities are equivalent to other employees in safety, as well as in other areas. Question: Mr. Coelho, as a person not suffering from any disabilities, I would like to understand more and be supportive. A friend explained to me that the terms we all grew up with for several disabilities no longer are accepted. Have some of these changed? We are opening up our own business and will be interviewing for job openings. I read your speech on the web and am inspired now to interview some disabled employees. Where can I find some information to help me understand what accommodations I can make, what I can and cannot ask, and how I can be of service? Thank you for taking questions here. TONY COELHO: I appreciate very much your interest in being supportive. One excellent resource is the Web site of the President's Committee on Employment of People with Disabilities (www.pcepd.gov), where you can download a publication called Ready, Willing & Available that may be particularly useful in setting up your business. Question: As a member of Congress for so many years, which bill besides the ADA are you most proud of? TONY COELHO: I am most proud of my work on all civil rights legislation, on housing and unemployment, for example. Question: Would like to find a job and support myself. I am 22 and live at home. I am an amputee and am trained to do secretarial work in a veterinarian office. I cannot seem to find a job and am very frustrated. How do I begin to fix this? Help. TONY COELHO: Stick with it and utilize as many resources as possible in looking for a position. You may find assistance through your state's vocational rehabilitation program. Good luck with your search! Question: Is there information available for improving our home for easy handicap access? We don't know where to begin and have our adult brother coming to live with us. He is in a wheelchair. Are there jobs available and how do we find them? Any suggestions would be very much appreciated. TONY COELHO: The best approach might be to ask your brother what changes in the home should be made. I suggest using your local independent living center as a resource. How to go about a job search depends very much upon a person's skills and interests. Your state's vocational rehabilitation program might be a good resource for training and information.

• Meet Don Hewitt-(Equipment Manager for the Rams) The voicemail invited me to leave a message... I cleared my throat and gave my name and phone number, asking if he remembered Shirl Rapport. A few days later when back in town, Don Hewitt returned my call, "Do I remember her?! I gave her that flak jacket... her vest! Let's talk!"
• September 11, 1997

During the first couple weeks of Shirl's journal, she supplied me with phone numbers belonging to some of the major individuals she would be writing about. The numbers were immediately tucked away in a growing file marked "Shirl," that holds the original emails, brochures from Cyberonics, photographs, FDA press releases, contacts from USC, magazine articles and a few late night crumbs. I love this file. Inside is a time capsule, and I fantacize about unearthing it and piecing together the threads that weave a historic discovery in medical history, WITH its author. Shirl is decked out in her helmet and I'm sporting my Sherlock hat, both of us leaning into a monitor, "mulling over a cup of coffee and the facts." Knowing that Shirl could do this on her own, I remind her that I spell, type fast, and make fabulous snacks. She, on the otherhand, has everything in her head and holds the key, so I have to share my snacks with her. We work well together. I should have called Don Hewitt, the equipment manager from the Rams football team the same week she wrote about him, but I felt intimidated by all those big, muscular bodies, football terms and sweat. What if they are all in the locker room making those guy noises when I call? What if they test me first on football terms and last week's plays before they let me talk to Mr. Hewitt? And worst of all, what if he doesn't remember Shirl?? So I called a few of the other contacts instead and put Mr. Hewitt back into the file. ("people box" as Shirl calls it) But this apprehension surprised me because I don't normally feel intimidated by an interview. Having worked with celebrities for a few years, this was completely out of character for me. I needed to figure out why Mr. Hewitt was on such a tall pedestal. I went back to the beginning and reread Shirl's journal until I found the clue. Mr. Hewitt is a key player, representing the most visual aspect of Shirl coming to terms with and accepting her epilepsy. Every step of her journey produces a special person, test, medication, treatment, discovery, friend or form of support. Each offers something new and provides more awareness and understanding. Shirl accepts and works with every component as needed, knowing that each fits into the puzzle in its own special way. The Vagus Nerve Stimulator sits inside of Shirl and does its job. The Medical Support Bulletin Board offers a connection to friendship and support all hours of the day and night. Her medication, blood tests, MRI's, doctors, nurses and medical visits keep Shirl checked, on track and in balance with her treatment. Bory, her friends and daughter provide love and partnership, encompassing all of the ingredients in her life, bringing up the edges and corners to buffer some of the rough spots. In return, Shirl gives back that... and so much more. When he replied to Shirl and Bory's phone call with, "Come NOW," Mr. Hewitt represented independence, a safety net from major injury, and most of all, Shirl's visual announcement to the world that declared "I have epilepsy. I fall, I get hurt, and I am wearing protective gear." (Doesn't it make you want to break into a verse of, "I am woman, hear me roar?") Don Hewitt, in his determination to help Shirl with protection, set an example of acceptance. His actions told Shirl to go out into the world and wear her vest proudly. Many of us who have known Shirl and fretted through some of her accidents and injuries from falls, look to Mr. Hewitt as a pivotal figure, setting Shirl free and presenting her with wings to fly... I had to call and meet the man who gave Shirl her vest. Intimidated? I would rather say that I was in awe. I left a message explaining who I was and that Shirl Rapport was writing an online journal that chronicled her life with epilepsy. Did he remember her? Would he like to call and add something to her journal? When he returned my call this afternoon I heard, "Ms. Eggleston?" I wanted to tighten my headset and drop for pushups. "Speaking," I answered. "This is Don Hewitt and yes, I remember Shirl Rapport! Let's talk." I opened up WORD and typed as fast as I could, while the Rams equipment manager reminisced. "It all started out when the L.A. Rams were in Anaheim, California. I got a phone call from Bory and Shirl one day, asking if there was any way I could help. Shirl, who has epilepsy, had been falling and getting bruised. We talked a bit and I invited them to come right down to see me. I suggested a flak jacket or a vest like the quarterbacks wore, so we looked around at what we had. The jacket I actually gave Shirl was one that Joe Namath wore, a backup vest of his. So when I understood exactly what she said she needed, I grabbed that particular vest. Of course, it was too big and needed altering, so that is what we did. The athletic service got involved and the vest was customized to fit Shirl. The vests have elastic in the back, shoulder straps and velcro. You put your arms through and it covers/protects the ribs and kidney area." "I recall that one day they came by to tell me how good the vest was working for her. I certainly appreciated meeting Shirl, and having the opportunity to help her out so she wouldn't get injured. It was just a football quarterback vest, but we knew it would certainly be beneficial to her." "You were famous, Shirl, wearing Joe Namath's quarterback vest! I remember after we fitted you, how much better you looked in it than a football quarterback. You are amazing and we certainly enjoyed meeting you. I am so glad to be able to contribute to your journal." - Don Hewitt That's my story and I'm sticking to it. - Nancy

Shirl answers some questions