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Medical Forum / Diseases and Disorders / Epilepsy / January 2004Oprah Winfrey show = ignorance
While watching Oprah yesterday (12/16), a show I've always enjoyed, I was astounded when they allowed a guest to read a letter containing the phrase, "seizure boy". She was referring to her husband and the odd way he dances with no rhythm at all. I couldn't believe my ears when this woman not only said it once but twice and the audience laughed. They showed a video of him dancing and he wasn't the best dancer in the world but calling him "seizure boy" was just cold, heartless and cruel to all of us who do suffer. I was shocked that a show like Oprah's could allow such a thing. I will be e-mailing the Oprah Winfrey show and sharing my feelings about this with them. I'll even suggest doing a show about epilepsy and the effects of it, I think her viewers need to be educated!! If you'd like to e-mail the Oprah Winfrey Show go to www.Oprah.com. You have to join up to e-mail her but it's worth it!! Miller If you have a Local Chapter of the Ep. Foundation of America, you could call them, or cc anything you write to them, too. Most of the Local Chapters have Educators who could also write to explain how the 21st Century works, and what might or might not be appropriate for a family program. I don't watch her unfortunately. She does have a large enough following though, that *she or the *producers should have been aware of that. Certainly most Sponsors are. But her main audience might not realize that -- I wonder how heavily she would have laughed if the husband had been identified as 'non-white', or had **Another Mental Health Syndrome? ... G./ (A figure *I* had heard was one person in ~15 has some type of seizure disorder- that might mean sometime during their Lifetimes. I haven't been able to confirm if that's the figure or 1 in 30 (I heard elsewhere). If it's the former, it's 7% of her Potential Audience. Perhaps she's trying to get out of a Longer Term contract she signed. ) > While watching Oprah yesterday (12/16), a show I've always enjoyed, I > was astounded when they allowed a guest to read a letter containing the [quoted text clipped - 12 lines] > have to join up to e-mail her but it's worth it!! > Miller Howdy! What's the big deal here? Don't any of you tell jokes about epilepsy? I sure do!!! Besides... if she said "seizure boy" I don't see anything there that demeans people with epilepsy. If a person dances so badly that it looks like he's having a seizure, why not call a spade a spade? You folks have to develop a thicker skin if you want to function in the REAL WORLD! There ain't no cure for stupid don'cha know!  SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > If you have a Local Chapter of the Ep. Foundation of America, you could > call them, or cc anything you write to them, too. Most of the Local [quoted text clipped - 30 lines] > > have to join up to e-mail her but it's worth it!! > > Miller BTW: There's a world of difference between ignorance, stupidity and slander! SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > Howdy! > [quoted text clipped - 14 lines] > > There ain't no cure for stupid don'cha know! I wonder if I could get a laugh out of 'jew boy' at the deli or 'black boy' Laughter is the best medicine as they say. Dave ©¿©¬ wrote: > Howdy! > [quoted text clipped - 14 lines] > > There ain't no cure for stupid don'cha know! You don't think there is a vast difference between comparing the twitchiness of a person's dancing style with a seizure and a racial slur? Hitler didn't. G./ > You don't think there is a vast difference between comparing the twitchiness > of a person's dancing style with a seizure and a racial slur? He probably used a hanky when he sneezed too. Should we stop? Some things in life might as well be smiled at as lamented. I much prefer my children to be amused by my spells then horrified and embaressed by them. > Some things in life might as well be smiled at as lamented. I much prefer > my children to be amused by my spells then horrified and embaressed by them. That's an excellent point. Mary Howdy Mary! SUCCESS!!! Guess I got a conversation started, eh? Epilepsy is just a part of what makes me ME: I am not afraid to look at it, talk about it or laugh about it! I will not crawl under a rock, treat it as a taboo subject, cringe or even worse, become enraged every time somebody says something that may be politically incorrect! SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > > Some things in life might as well be smiled at as lamented. I much prefer > > my children to be amused by my spells then horrified and embaressed by [quoted text clipped - 3 lines] > > Mary On ya Dave, with you on that one. I believe that same as you. I have always laughted along with all the eppie jokes and also made some myself. Hiding under a rock never proved anything...just hurt my head, so decided not to try that again :-) Cheers Darryl > Howdy Mary! > [quoted text clipped - 24 lines] > > > > Mary To me it is a big deal and not too much different. I really don't get how it is different -- in most cases you are born each ways. The only difference is that socially one is considered a bigger issue than another purely b/c of culture making it that way. Gender issues didn't become a public issue until very late in US history which is why it took forever to get women's right to vote. Up until that time, it must have been a joke to compare it to racial issues? That attitude is why it took forever. I can laugh about my seizures, but someone saying something like seizure boy is obnoxious. It's odd to me to think if someone is personally offended, then it purely must be their problem. If I am holding a glass and it slips out of my hands, and I say "Wow, that was a Parkinson's slip" If Michael J. Fox had a problem with that, then he was too sensitive and it must be his problem? The fact that anyone would think that if I held my tongue in that situation I would be caving to political correctness is more than a bit disturbing. The day that PC = thinking about the feelings of others, then damn, what a sad, pathetic world. btw no one cries to bed at night about this stuff, it's just IMO whether you'd laugh along or wouldn't. > To me it is a big deal and not too much different. I really don't get > how it is different -- in most cases you are born each ways. The only [quoted text clipped - 17 lines] > disturbing. The day that PC = thinking about the feelings of others, > then damn, what a sad, pathetic world. The reason why this issue bothered me so much is that while I can laugh at myself through all my seizures I can't and will not accept or laugh at ignorant people using seizures in a jokingly manner. That man's nickname is "seizure boy" to all his friends and family whenever they get together to dance and probably at other times too. It's funny to them because watching him dance looks like seizures they've seen on TV or have heard about. Yeah, they're making fun of his dancing, but at who's expense? The people who do suffer from seizures, that's who! If one of them developed a seizure disorder then they might step back and realize that nickname is a little insulting. But the real ignorant ones were the producers of the show who overlooked so many other choices and selected that couple to be on that day and read their letter. In their selection they could've used some good judgement and said, "Hey, seizure boy doesn't sound too good, let's edit that out", but they didn't. So not only did it become a joke for friends and family among this man, but it became a joke that the producers of the show seemed to get a kick out of and broadcasted nationally. I wonder if they would've done the same if he danced like he had Cerebral Palsy or Down's Syndrome and was given a nickname in that regard, "Palsy boy"? Oh please, if that was the case the couple wouldn't have been selected to be on the show at all!!! That would be bad taste! But "seizure boy" is acceptable??? If you can laugh at yourself, that's great, because I can too. But if you can accept people who use seizures in such a jokingly manner and laugh alongside them when they have no respect for you, then you go right ahead. I think I'll pass, I have too much self-respect. That's all I needed to say, thank you very much!! Miller Not to sound cold.... and not to say that this is wrong...but....and this is a big BUT!!!!! - at some point in all of our lives we have made reference to some illness or disease or disability and used it as a smile.. Hellen Kellar "excuse the spelling" jokes when we were kids.. or blind as a bat!! and etc... so just because all of us have epilepsy ,....lets not become to over sensitive on this one ; ) peace!!!!!!!! > If you have a Local Chapter of the Ep. Foundation of America, you could > call them, or cc anything you write to them, too. Most of the Local [quoted text clipped - 30 lines] > > have to join up to e-mail her but it's worth it!! > > Miller You're probably right. I wasn't going to get drawn into more of those-- again. I guess I have 13.5 days to get last of my filters in-place to keep from being drawn in by those before 2004. In the end they don't accomplish anything, don't change anyone's mind wrt. their own points of view, and likely drive off some newbies or lurkers who might have something important to discuss. I also found that the longer those types of threads get the larger the volume of junk that Spamkiller pulls down from mail trying to get through. Wrt. your comment at bottom about 'at least some time in our lives we've all done this etc.', I really never saw a value in finding 'comic material' at another's expense or disability. That was in-place years before I had my first seizure. Guess it's just a Quirk of the way I was brought up. I can't explain it. Maybe it's just tunnel vision. G./ > Not to sound cold.... > and not to say that this is wrong...but....and this is a big BUT!!!!! [quoted text clipped - 9 lines] > > call them, or cc anything you write to them, too. Most of the Local > > Chapters have Educators who could also write to explain how the 21st Century > > works, and what might or might not be appropriate for a family program. > > I don't watch her unfortunately. She does have a large enough following > > though, that *she or the *producers should have been aware of that. > > Certainly most Sponsors are. [quoted text clipped - 6 lines] > > able to confirm if that's the figure or 1 in 30 (I heard elsewhere). If > > it's the former, it's 7% of her Potential Audience. Perhaps she's trying to > > get out of a Longer Term contract she signed. ) > > [quoted text clipped - 15 lines] > > > have to join up to e-mail her but it's worth it!! > > > Miller > Wrt. your comment at bottom about 'at least some time in our lives we've >all done this etc.', I really never saw a value in finding 'comic material' >at another's expense or disability. That was in-place years before I had >my first seizure. Guess it's just a Quirk of the way I was brought up. I >can't explain it. Maybe it's just tunnel vision. G./ Laugh *with* me, not at me. How else could I live with the knowledge that I ran five miles naked in public down a disused railway footpath and ended up in the town car park ?! And when I went to find my clothes several days later, the police divers were out in the lake because they thought I'd topped myself. It's still by far the funniest entry in my ever decreasing memory. If I don't laugh at it, what am I supposed to do? Imagine yourself in my situation and let yourself smile just a little bit at it? See - you're not laughing *at* me after all, are you - you're laughing with me, and I don't mind a bit. SignatureMalcolm If I'm relaxed I can laugh at the mistakes I make. eg the other day I put about a pint of stock on the hob to heat up. By the time I remembered it practically all of it had evaporated, but it meant that it had reduced to a much better amount/flavour so I was grateful for that and that my saucepan had not been burnt. I once found myself on a bus with both shoes on but one sock off so I must have started to undress but fortunately stopped before I'd got too far. Today I decided to go on a half hour bus ride to deliver a Christmas card to some ex-colleagues at a Citizens' Advice Bureau. Half way there, I realised I'd left it at home. However, I'd already decide to present tham with a bottle of bubbly so it was pleasing that the brand I wanted had been reduced from £5.99 to £3.99. Chris L. > Laugh *with* me, not at me. How else could I live with the knowledge > that I ran five miles naked in public down a disused railway footpath > and ended up in the town car park ?! And when I went to find my clothes > several days later, the police divers were out in the lake because they > thought I'd topped myself. It's still by far the funniest entry in my > ever decreasing memory. > If I don't laugh at it, what am I supposed to do? Imagine yourself in my > situation and let yourself smile just a little bit at it? > See - you're not laughing *at* me after all, are you - you're laughing > with me, and I don't mind a bit. This thread is a very interesting one. I too feel it was wrong for the show to allow what they did. How would Oprah herself feel if someone had written a letter and said they were so tanned they looked like a nigger. Only saying it in a way to not hurt or offend anyone, but I just wonder how she would have felt. I apologize to any of you here that are black and want you to know I meant nothing about any of you. I was simply making a statement. I no longer laugh at my epilepsy, it is on the verge of causeing me to lose a business I have worked hard to build. Is that something to laugh about? I don't think so. I quit laughing when a Doctor caused me to lose my drivers license and cost me my job. I quit laughing and realized this is a difficult and trying illness. If you don't think it is you are wrong or you have a very mild case and are under control. I would like to see anyone laugh after trying to sell a service to a new client and in the process be having seizures, not even able to continue what you were saying. I would like anyone to say you have to laugh at it when you try to talk to your family and in the process walk away without knowing what you are doing. My friends for those of you that have had this disorder for as many years as I have and for those of you that are seeking to find something to control them, you are not laughing I know you aren't. Mention any other emotion and yes you can say those. My daughter just came and ask me to play cards with her and my wife and I had to tell her no because I am having seizures and could not play. I am laughing my a.s off. Ok I will stop for now. Sorry if I offended anyone I did not mean it that way. > If I'm relaxed I can laugh at the mistakes I make. eg the other day I put > about a pint of stock on the hob to heat up. By the time I remembered it [quoted text clipped - 25 lines] > > See - you're not laughing *at* me after all, are you - you're laughing > > with me, and I don't mind a bit. Man, self pity is embarassing to see. We all have our own problems that we don't feel like laughing about. We all have incidences in our lives that make us feel blue. We all hate the fact that we have epilepsy. We all hate the effect that it has on our lives and the lives of those we love. I hate the fact that I was so stupid I thought I could drive while I have epilepsy. I hate the fact that a seizure caused my car to leave the road and hit a pedestrian. I hate the fact that he killed himself because he couldn't live with the injuries sustained because of my stupidity. I hate the fact that I had to resign my license because of that and will probably never drive again. I hate having up to 10 seizures every day (on a good day) and scaring the life out of the people around me. I hate the fact that I don't have a job and I'm unable even to remember how to do the job I was doing for 20 years. I hate the fact that when my daughter was four, she managed to get into a locked drawer and almost died from taking my medication. But there's a lot of good in life. There's a lot to be happy for and to laugh about. I find it very funny that I can't remember anything my wife has told me - including the arguments. I find it hilarious the way my kids try to explain my seizures to their friends. When I was managing a factory I always found it a riot when I had a seizure in front of my clients and they were totally perplexed and didn't know what was happening, and then they were so embarassed when I told them and they tried to pretend they had known all along. I love that all my life my brothers and sisters haven't wrapped me up in cotton wool and protected me, but have made fun of me (in a loving way) and joked about how I was just trying to get more attention. I love the way my wife and kids joke and laugh with me about my seizures. I love to hear a good "eppie" joke, and will repeat it to all my friends, who laugh with me. Life isn't about dwelling on the things that go wrong...it's about having fun with whatever might come your way, whether they are ultimately good things or bad things. Make fun of yourself, laugh at yourself, make jokes of the embarassing things that happen to you. Let the people around you know that you have epilepsy and are totally accepting of the fact that this is your life and part of who you are. No need to be tight and self defensive about it, that only makes others feel the same way. You need to accept who you are and what you have and you will find that other people will accept you more easily. Should Oprah have put that letter on her show? It's fine with me. I know who I am, I don't find my self worth is reduced by it. I actually find it an amusing way of describing his way of dancing. Cheers Darryl. 27 minutes seizure free and counting. > This thread is a very interesting one. I too feel it was wrong for the show > to allow what they did. How would Oprah herself feel if someone had written [quoted text clipped - 53 lines] > > > See - you're not laughing *at* me after all, are you - you're laughing > > > with me, and I don't mind a bit. Howdy Darryl! re: "self pity is embarassing to see" Embarassing isn't exactly the word that I would use. (I was thinking more along the lines of "repulsive.") IMO there's only one thing worse than pity, that's SELFpity! BTW: Once you've learned to live with it and accepted it as a part of your SELF, "hate" doesn't even come into the picture. SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > Man, self pity is embarassing to see. > [quoted text clipped - 125 lines] > > > > See - you're not laughing *at* me after all, are you - you're laughing > > > > with me, and I don't mind a bit. G'day Dave, Yes, I too find it repulsive - I was trying not to be too hard on him. You're right, I can't abide being pitied either, and won't stand to be around people who feel that way about me. There have been one or two times in the past that I've felt self pity because things were going so terribly wrong, and I've hated myself for it. It's the lowest human emotion. By the way, what the heck does "Noli illigitemi carborundum decendus" mean??? Isn't carborundum a brand of sandpaper? Cheers. Darryl. 14 minutes seizure free and counting. > Howdy Darryl! > [quoted text clipped - 13 lines] > > http://www.howdydave.com I call it head-patting. You know, metaphorically saying 'There, there, dear, we know you're not as good as us but we'll try to let you take part in things we think you might be able to do to a minor extent.' It also makes me angry when doctors won't give my opinion as much respect as another doctor's, even if the latter is not an expert in epilepsy. It's taken me about 3yrs to convince a psychiatrist that I would be better taking an anti-depressant drug and risking more fits (and I only have ones that only last about 10mins about once in 10 days) than being so depressed that I attempted suicide 4 times in the last year. Other things have changed and cheered me up but, since I've been taking 20mgms citalopram/day, I've actually had fewer fits. I've relaxed enough to tackle a lot of things that seemed absolutely out of my range for years and in my present frame of mind, it's difficult to believe that 3 months ago I felt suicidal. One of the things I realised was that being depressed takes a lot of mental energy. It's exhausting and reduces one's capacity to think sensibly. This leads to mistakes, bad memory etc and fears become self-fulfilling. Perhaps others whose epilepsy makes them angry would benefit from psychotherapy to stop it influencing the rest of their lives in such a negative manner. Chris L. > You're right, I can't abide being pitied either, and won't stand to be > around people who feel that way about me. > > Cheers. > Darryl. | It also makes me angry when doctors won't give my opinion as much respect | as another doctor's, even if the latter is not an expert in epilepsy. That really annoys me when they do that. They should realise, when someone who has had epilepsy for 30 years comes to them, that the patient knows more about their own case than any doctor ever will. There have been a number of times when I have had to tell neuros they're wrong about one thing or another, and fortunately, most I've dealt with seem to accept that I would know at least a little about my own condition. My G.P is brilliant. He goes along with whatever I say and follows my recommendations, prescribes whatever I suggest and refers me to whatever specialists I want to go to. I have him trained well. LOL. | It's exhausting and reduces one's capacity to think | sensibly. This leads to mistakes, bad memory etc and fears become | self-fulfilling. | Chris L. You want to know about bad memory? I'll tell you all about bad memory..............................now, what were we talking about?? Cheers, Darryl. 8 minutes seizure free, given up counting. |
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