Although my Entertainment Weekly did arrive today, not only was it unreadable to me, but it actually managed to set of a nifty asthma attack, due to the inclusion of perfume ads. There have never before been odorous ads included in my copy of EW (and I've been a subscriber on & off for about 12 years), so I am particularly disappointed with the fact that there was no notice or invitation to opt out regarding your magazine's intention to add ads with fragrances. There are many health issues which could be negatively impacted by your decision, including my own, and to so completely ignore the needs of your readers with disabilities, seems a grave oversight. It was not my intention to start the weekend with a heavy dose of steroids, just as my as I am sure it was not your intention to cause such a need, but when it comes to people's health, intention doesn't matter nearly as much as actions. I suggest, in the future, that you enable the customers of your magazine to have the choice over whether these ads are included or not.
I did contact your 'customer service representative' by phone, and was given the option to be removed from the perfume ad list when it comes to future issues, which is great. However, it may take up to a month (meaning an additional 3-4 issues) before this takes effect. So now I will potentially miss out on a month's worth of my paid subscription, during which time I can not buy the issue on news stands either, because they too would include the odorous ads, all due to a decision made my your magazine that an easy notification would have prevented. This does not even take into account my current discomfort - an asthma attack only seems like no big deal to people who aren't having them. I also realized, after I hung up the phone, that my complaint would likely go unheard by anyone else: the young man I spoke to changed the options of my subscription, and that was the end of that. But it isn't for me: I didn't have the option of forgoing the breathing difficulties this morning, and I don't think you should have the option of ignoring the kind of damage your oversight can cause.
I'd like you to consider instead that your magazine had been proactive towards its customers with disabilities (or even those who just don't like these ads): If you had included a little note about it in your magazine a few months ago, for some reasonable amount of time, given a little forewarning "Note To All Customers: If you are a subscriber of our magazine, please know that we will begin including perfume/cologne ads as of XY/XY/12. If you would like to opt out of such ads, please contact us at www.ew.com prior to (start date), so that there will be no interruption to your service." Simple: two sentences, and you've prevented a TON of possible adverse health issues; looked out for your consumers and helped them see that they are in fact, valuable to you; and maybe even gotten some great word of mouth press regarding your brand's willingness to be a truly accessible magazine. (I know that anytime a service I am using goes out of their way to make me feel valued, I tend to tell everyone I know about it. The opposite, is also, unfortunately and obviously, true as well.)
Instead it's (thankfully a relatively minor) illness & outrage on my part (although I should be used to being overlooked, despite the fact that I am a paying customer, I don't know that I ever will be), and a truly missed opportunity to step up to the plate, accessibility wise, on yours.
I look forward to hearing from you,
Showing posts with label Letters. Show all posts
Showing posts with label Letters. Show all posts
Monday, April 02, 2012
Wednesday, March 07, 2012
Dear Scholastic,
As a geeky bookworm of a kid, I looked forward to nothing more than Scholastic Book day at school - the day those thin, two page booklets full of books to buy would get passed out. We rarely ordered from them (my grandmother was a teacher, so if we had stuff we really wanted, she'd order for us with her class order), but the idea that there were all these new (to me) books to add to my library list was one of my favorite parts of school, hands down. And I've read a million excellent books that you've published, or had a part in, and, as a former K/1st Gr teacher, taught out of more than one of them myself. That's why I was disheartened this morning to see these two specific groupings of books available for sale through one of my many daily deal outlets:
I'm going to be really clear and say that I have obviously not read these books, and hope that there is not such a great difference between the two sets as the titles imply, but it seems unlikely that this could be so. The titles make it clear that the girls' set is concerned with appearances and relationships - things girls can be into; while the boys' set is equally stereotypical - boys need to survive and have adventures, can face challenges. Is this the message we should be sending to our children - not just our girls, who need to know they can face challenges too, and don't have to be glamorous while doing so, but also to our boys, who should also be capable of being good friends? Is there a reason why girls can't be adventurous as well as glamorous? Or why boys can't be gods who know how to survive anything? This kind of gender binary crap is beneath you.
Yes: both boys and girls have their own guide to being the "best at anything," and hopefully the chapters of those books are less gendered - although a quick glimpse of their Amazon book descriptions does not bear out that hope. The boy's book includes how tos on all sorts of interesting things:
I just don't get it, and I would hope that a company that is dedicated to helping educate children would endeavor to help them learn that they don't need to be limited by what a girl/boy should do. So, Scholastic: You Can Do Better.
Sincerely, NTE
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| The Girl's Book of Glamour: A Guide to Being A Goddess; The Girls' Book: How to be the Best At Everything; The Girls' Book of Friendship: How to Be the Best Friend Ever. |
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| The Boys' Book of Adventure: Are You Ready to Face the Challenge?; The Boy's Guide: How to Be the Best at Everything; The Boys' Book of Survival: How to Survive Anything, Anywhere. |
I'm going to be really clear and say that I have obviously not read these books, and hope that there is not such a great difference between the two sets as the titles imply, but it seems unlikely that this could be so. The titles make it clear that the girls' set is concerned with appearances and relationships - things girls can be into; while the boys' set is equally stereotypical - boys need to survive and have adventures, can face challenges. Is this the message we should be sending to our children - not just our girls, who need to know they can face challenges too, and don't have to be glamorous while doing so, but also to our boys, who should also be capable of being good friends? Is there a reason why girls can't be adventurous as well as glamorous? Or why boys can't be gods who know how to survive anything? This kind of gender binary crap is beneath you.
Yes: both boys and girls have their own guide to being the "best at anything," and hopefully the chapters of those books are less gendered - although a quick glimpse of their Amazon book descriptions does not bear out that hope. The boy's book includes how tos on all sorts of interesting things:
Found yourself in a sticky situation? Inside you'll learn how to escape quicksand (p. 40), build a raft (p.41), start a survival fire (p.99), or fly a helicopter (p. 11).while the girls choices are certainly more stereotypically 'girly':
Want to impress your friends? Now you can rip a phonebook in half (p. 35), hypnotize a chicken (p. 56), or read their minds (p. 73).
Boring Saturday afternoon? Not anymore when you find out how to make a waterbomb (p. 79), a boomerang (p. 95), or a volcano (p. 88).
And loads of other keen things you need to know how to do!
Want to be known for your unique style? Inside you'll learn how to design your own clothes (p. 35), do the perfect manicure (p. 82), or make your own lip gloss (p. 11).Here's the thing: I get that these books follow a trend - following The Dangerous Book for Boys book that came out a few years ago, and it's Daring Book for Girls cohort - and that there's a call for these kind of books with all these different skill sets that are seen as retro throwbacks to when kids knew things like how to play cat's cradle and build a campfire out of sticks. I even think the two books I just mentioned were both interesting and informative (if similarly gender-biased). I just don't get why it has to be so gender specific: I know more than one boy who could use some information about how to deal with a bully and am sure there are some who would be interested in making crystals or scrapbooks (if only they weren't just for girls!) And I was a young girl, and I happen to know a few of them currently - (me and) every single one of them would like to read minds, loves to play with waterbombs, and would be the hit of a party if she could rip a phonebook in half. I mean: c'mon.
Feel like impressing your friends? Show them how you can make a crystal (p. 16), juggle one-handed (p. 33), or deal with a bully (p. 42).
Bored and need something to do? Not anymore when you find out how to keep a secret diary (p. 88), make a scrapbook (p. 9), or put together a dance routine (p. 24).
And tons of other neat-o things you need to know how to do!
I just don't get it, and I would hope that a company that is dedicated to helping educate children would endeavor to help them learn that they don't need to be limited by what a girl/boy should do. So, Scholastic: You Can Do Better.
Sincerely, NTE
Sunday, March 04, 2012
Choosing your friends wisely
Here's yet another letter I've written lately, this one to Carbonite CEO David Friend, re: Limbaugh's ridiculous show (how is that still on the air?)
Mr Friend -
You don't know me, but I am glad to find your contact information here on your website - it is a good sign when the president of the company encourages his consumers to contact him. I hope that this e-mail, although serious in tone, will be a welcome one. I am a loyal Carbonite customer for nearly three years now, and I love your product & services. I have enjoyed the simplicity of your product (the not having to remember whether I backed things up already, especially) and the quality of support I have received from your employees during my time as a Carbonite consumer. I also am quite glad to be able to support a local company.* I know that because, as much as I am able, I aim to be a conscientious consumer, which means supporting the local economy when it's possible, as well as shopping around for value, doing research into business practices, etc. By that means, and my own experiences, I have learned a number of positive things regarding your company and your services. However, I have quite recently become aware of an issue that has lead me to seriously consider ending my relationship with your company - the fact that you are listed as a major sponsor of the Rush Limbaugh show.
Your company certainly has the right to place ads with whomever they choose, and I'm sure (for reasons that are baffling to me as a human being) that there are benefits to being associated with the Limbaugh show that I, since I am totally unconcerned with media relations, am completely unaware of - Someone must listen to that show, because it is still on the air. What I am concerned with, however is the fact that the show you sponsor is a show in which the host has repeatedly made comments that are misogynistic, racist, homophobic, ableist, and destructive to our country - and to specific individuals as well. I believe that his speech, while perfectly legal and protected under the 1st Amendment, is often amoral - his latest debacle of calling a woman who dared to speak about her own reproductive & health care needs a "slut", for example -, hateful, hypocritical, and ignorant. There is nothing to support about a man, a show, a program, who sees nothing wrong with calling the first lady "uppity" or thinks that using the term "feminazi" is appropriate in any context (let alone repeatedly and with glee). There is no way I want my money to go a company who thinks it worth their time & money to support a man who thinks it's ok to tell an African-American caller to "take the bone out of your nose and call me back," or to encourage the use of slurs like 'retard', because "Our political correct society is acting like some giant insult’s taken place by calling a bunch of people who are retards, retards. I mean these people, these liberal activists are kooks. They are looney tunes. And I’m not going to apologize for it." Are those the words of a man you want representing your company?
I really hope not.
I honestly hope that your company chose this sponsorship based on some random financial calculations - that some math wizard in your advertising department said: 'Hey, look: this is where the money could be.' and you followed along, not knowing that cost would be a real sense of integrity for your company. I hope that is the truth of it, and that you do not, in fact, agree with Mr. Limbaugh on any of this subjects (or the millions of other insulting and derogatory remarks he makes on a daily basis against women, people of color, people of religions that are foreign to him, people with physical limitations, etc.
I understand sometimes that business decisions get made with out all of the facts - like you choosing to sponsor this show, or me choosing to use Carbonite's product. But we both know the facts now - I know you sponsor a show that contributes only hatred and lies to the national discussion, and now, so do you. One of us will be making be making a new decision very shortly - either you will end your sponsorship of Mr. Limbaugh's show, or I will end my association with your company. I will be sorry to do it, for it will make my life more complicated & I think you have a high quality product, but I believe very strongly in the power of words, and I won't use the services of a company who allows such hatred to be spewed in its name.
Sincerely,
NTE
*Carbonite is, at least in part, Massachusetts-based.
Update: I had this post scheduled to go up today, and late yesterday on Twitter saw that Carbonite had removed their ads from Rush's show due to "the greatest outcry" they've ever seen & that Rush "overstepped any reasonable bounds of decency". Win!
Mr Friend -
You don't know me, but I am glad to find your contact information here on your website - it is a good sign when the president of the company encourages his consumers to contact him. I hope that this e-mail, although serious in tone, will be a welcome one. I am a loyal Carbonite customer for nearly three years now, and I love your product & services. I have enjoyed the simplicity of your product (the not having to remember whether I backed things up already, especially) and the quality of support I have received from your employees during my time as a Carbonite consumer. I also am quite glad to be able to support a local company.* I know that because, as much as I am able, I aim to be a conscientious consumer, which means supporting the local economy when it's possible, as well as shopping around for value, doing research into business practices, etc. By that means, and my own experiences, I have learned a number of positive things regarding your company and your services. However, I have quite recently become aware of an issue that has lead me to seriously consider ending my relationship with your company - the fact that you are listed as a major sponsor of the Rush Limbaugh show.
Your company certainly has the right to place ads with whomever they choose, and I'm sure (for reasons that are baffling to me as a human being) that there are benefits to being associated with the Limbaugh show that I, since I am totally unconcerned with media relations, am completely unaware of - Someone must listen to that show, because it is still on the air. What I am concerned with, however is the fact that the show you sponsor is a show in which the host has repeatedly made comments that are misogynistic, racist, homophobic, ableist, and destructive to our country - and to specific individuals as well. I believe that his speech, while perfectly legal and protected under the 1st Amendment, is often amoral - his latest debacle of calling a woman who dared to speak about her own reproductive & health care needs a "slut", for example -, hateful, hypocritical, and ignorant. There is nothing to support about a man, a show, a program, who sees nothing wrong with calling the first lady "uppity" or thinks that using the term "feminazi" is appropriate in any context (let alone repeatedly and with glee). There is no way I want my money to go a company who thinks it worth their time & money to support a man who thinks it's ok to tell an African-American caller to "take the bone out of your nose and call me back," or to encourage the use of slurs like 'retard', because "Our political correct society is acting like some giant insult’s taken place by calling a bunch of people who are retards, retards. I mean these people, these liberal activists are kooks. They are looney tunes. And I’m not going to apologize for it." Are those the words of a man you want representing your company?
I really hope not.
I honestly hope that your company chose this sponsorship based on some random financial calculations - that some math wizard in your advertising department said: 'Hey, look: this is where the money could be.' and you followed along, not knowing that cost would be a real sense of integrity for your company. I hope that is the truth of it, and that you do not, in fact, agree with Mr. Limbaugh on any of this subjects (or the millions of other insulting and derogatory remarks he makes on a daily basis against women, people of color, people of religions that are foreign to him, people with physical limitations, etc.
I understand sometimes that business decisions get made with out all of the facts - like you choosing to sponsor this show, or me choosing to use Carbonite's product. But we both know the facts now - I know you sponsor a show that contributes only hatred and lies to the national discussion, and now, so do you. One of us will be making be making a new decision very shortly - either you will end your sponsorship of Mr. Limbaugh's show, or I will end my association with your company. I will be sorry to do it, for it will make my life more complicated & I think you have a high quality product, but I believe very strongly in the power of words, and I won't use the services of a company who allows such hatred to be spewed in its name.
Sincerely,
NTE
*Carbonite is, at least in part, Massachusetts-based.
Update: I had this post scheduled to go up today, and late yesterday on Twitter saw that Carbonite had removed their ads from Rush's show due to "the greatest outcry" they've ever seen & that Rush "overstepped any reasonable bounds of decency". Win!
Friday, February 03, 2012
Dear Media Relations Person, Susan G. Komen Foundation -
I'm sure you're getting a metric ton of these e-mails and letters, and wading through them is both frustrating and overwhelming. I know the feeling - I have probably the same amount of medical bills and test results and doctor's notes to wade through myself. Because I live with illness, I live with paperwork. And because it's your job, so do you. I doubt you were expecting all of this, however - all these critical, disappointed, stinging responses to your new policy of cutting funding for Planned Parenthood
Here's the thing - I am sure that you started at this job because you wanted to help people with cancer: can't think of any other earthly reason why else you'd be working for a Foundation (usually) known for it's dedication to eradicating, educating about, and researching into the causes of breast cancer. I just did a little research into the Foundation, which I'd heard of, of course, but knew very little about - I'm sorry to hear of Ms. Komen's personal battle with breast cancer, and touched by the fact that her loss led to the the salvation of many other women: it's a great tribute to her, and for her sister to have created the Foundation in her name is truly inspiring.
I am sure, given those circumstances, and all that you all have done in the past 30 years to further the cause, that all of this negative attention is probably pretty disheartening, and I'm sorry for that.
But what's not inspiring is bigotry, ignorance or discrimination. And what's also disheartening is your organization's new policy, which is both antithetical to your stated goals of "to eradicate breast cancer by advancing research, screening, care and education," but also short sighted and, frankly, appalling.
I personally, (and every woman I have spoken to on the subject, as well as those who are leaving messages on your Facebook page and sending e-mails and writing blog posts) fail to see how defunding cancer screenings - and let's be clear, that is ALL you are defunding, cancer screenings and treatments (17% of Planned Parenthood's services) - for (mostly) lower-income women will help you to attain your "vision of a world without breast cancer." That's not logical, it's not honest, and it sullies the good work you have done (or will continue to do).
Politics, although very few seem to recognize this, has no place in medicine. There is nothing 'pro-life' about cutting off the ONLY route many women/men will have to prevent, treat, or cure their breast cancer. It is hypocritical of your Foundation to hide behind 'policy changes' and obscure new rules about 'organizations under investigation', when your own executives are the ones who are leading the charge for those investigations, and whose only motivation is their own political agenda.
An organization such as yours, which claims to be "For the Cure", which has done so much in pursuit of that cure should not be discriminating against women who need your help. For any reason. You should be above the political maneuverings on a divisive issue, when it has absolutely nothing to do with what you are fighting for.
I'm not saying your executives should support Planned Parenthood if they are against some of the things that go on there, but your Foundation? Whose only mission is to 'eradicate' this illness? Should continue to support the people on the front lines - the women and men who need screening and treatment and care, the doctors and nurses who provide that care, the technicians and specialists who evaluate the needs of the patients - no matter where they are practicing. This new policy, is egregious and should be corrected IMMEDIATELY.
I mentioned my own illness in the beginning of this letter, and while it isn't breast cancer, without the help of local clinics, many funded through private foundations and organizations like your own, my life would be very different right now. I would not - do not - have the resources to battle it on my own, and would have no way or receiving them without help. I cannot condone or understand an organization that is supposed to be dedicated to such a noble goal - eliminating breast cancer, The End. - making such an ill-conceived and deadly decision. Because make no mistake, for women like me, who depend on places like Planned Parenthood for their care, taking away those sort of places, is taking away our only chances of survival.
I don't send my money or donate my time to organizations that think it's ok to discriminate against whole segments of the population, or who put politics before their own goals and the needs of the people they're supposed to be meeting. That is what you are doing with this new decision. I hope that you will reconsider your policy shift, and make this right. Until that change is made, please know that you will not be getting my support, nor, I suspect, the support of many others.
Sincerely,
Thursday, February 02, 2012
I've been writing letters
Some actually got sent (mostly advocacy ones), and some are just rolling around in my brain, and some I typed up just to get them to stop rolling around in my brain - with no plan of ever sending them. But there might be a couple of letter posts in a row, here, just so you know. To start us off, here are two that go together -
Dear Therapist Who Apparently Has No Compassion/Home Health Aide Who is Too Rough/Nurse Who is Rolling Your Eyes Right Now,
I know my grandmother is stubborn - it's kind of a point of pride, in our family, that we are all 'strong willed,' but nobody as much as she. I know that, at 94, it is sometimes hard for her to adapt to new situations as quickly as you all would like her to. But I think it also would behoove you to remember that she's not stupid, that she did, somehow survive for these past 94 years, doing the best she could. This is a woman who has lived through a lot - 2 World Wars, technically! A major car accident! Being a nurse on the maternity ward when losing mothers and babies was seen as the cost of doing business! She has raised nine children, one with Down's Syndrome, and helped raise at least one of her grandchildren. She lost her mother when she was a child, her father almost 40 years ago, all of her 5 siblings, half of her children as adults, and her spouse. She's a tough lady, is what I'm saying, and she's hurting. Physically and emotionally.
So, maybe you take your time going through today's exercises with her, or cut her some slack for not doing them when she had the stomach flu? Maybe you take her word for it when she says that something feels different, not just assume it's just something she never noticed before. No: she won't always follow directions blindly, which might be easier for you, but wouldn't be for her. It's pretty reasonable for her to ask questions about something she knows very little about, so maybe rolling your eyes isn't the best response. Also?
Could you look up from your god damn schedule/paperwork/planned assignment for today just for a minute and recognize that what you want to do and what she needs are not always the same thing? She's not inside your little laptop - she's sitting right in front of you, and she's scared (though she'd never tell you that) and she's pissed (which you might have gleaned) and she's frustrated (because '8 weeks should be long enough!') and she's hurting (because she fell down the stairs. And broke her arm. And had five screws put in. And is ninety four frigging years old!)
So let's try out that bedside manner you're supposed to have in there somewhere, and give empathy a shot for a little bit. It won't hurt you, I promise. And it'll make things a whole lot easier on her.
Trying not to hate you right now,
NTE
Dear Every Other Person We Have Worked with in the Past 8 Weeks,
I appreciate your patience and your kindness and your understanding with my grandmother. I know she has not always been the best patient, but thank you for realizing that it is for valid reasons, and that she's doing the best she can, even when all that is is refusing to do what you want her to do. She really is recovering incredibly well, and I know it is, in large part, due to your help. She knows it too, and I think, has shown you all how grateful she is (even though she is also telling you how frustrating it is to need your help). Many of you have commented on her spirit, and how gutsy she is: I agree. Some of you have noticed when she is feeling a little low, and have tried to listen to what she needs - even if all that is is listening, or cutting her toenails, or remembering to wipe your feet before you come into her house when it's raining out, and I could not appreciate it more. She's a special lady, my grandmother, and it's nice to know you all think so too.
With my very sincere thanks,
NTE
Dear Therapist Who Apparently Has No Compassion/Home Health Aide Who is Too Rough/Nurse Who is Rolling Your Eyes Right Now,
I know my grandmother is stubborn - it's kind of a point of pride, in our family, that we are all 'strong willed,' but nobody as much as she. I know that, at 94, it is sometimes hard for her to adapt to new situations as quickly as you all would like her to. But I think it also would behoove you to remember that she's not stupid, that she did, somehow survive for these past 94 years, doing the best she could. This is a woman who has lived through a lot - 2 World Wars, technically! A major car accident! Being a nurse on the maternity ward when losing mothers and babies was seen as the cost of doing business! She has raised nine children, one with Down's Syndrome, and helped raise at least one of her grandchildren. She lost her mother when she was a child, her father almost 40 years ago, all of her 5 siblings, half of her children as adults, and her spouse. She's a tough lady, is what I'm saying, and she's hurting. Physically and emotionally.
So, maybe you take your time going through today's exercises with her, or cut her some slack for not doing them when she had the stomach flu? Maybe you take her word for it when she says that something feels different, not just assume it's just something she never noticed before. No: she won't always follow directions blindly, which might be easier for you, but wouldn't be for her. It's pretty reasonable for her to ask questions about something she knows very little about, so maybe rolling your eyes isn't the best response. Also?
Could you look up from your god damn schedule/paperwork/planned assignment for today just for a minute and recognize that what you want to do and what she needs are not always the same thing? She's not inside your little laptop - she's sitting right in front of you, and she's scared (though she'd never tell you that) and she's pissed (which you might have gleaned) and she's frustrated (because '8 weeks should be long enough!') and she's hurting (because she fell down the stairs. And broke her arm. And had five screws put in. And is ninety four frigging years old!)
So let's try out that bedside manner you're supposed to have in there somewhere, and give empathy a shot for a little bit. It won't hurt you, I promise. And it'll make things a whole lot easier on her.
Trying not to hate you right now,
NTE
Dear Every Other Person We Have Worked with in the Past 8 Weeks,
I appreciate your patience and your kindness and your understanding with my grandmother. I know she has not always been the best patient, but thank you for realizing that it is for valid reasons, and that she's doing the best she can, even when all that is is refusing to do what you want her to do. She really is recovering incredibly well, and I know it is, in large part, due to your help. She knows it too, and I think, has shown you all how grateful she is (even though she is also telling you how frustrating it is to need your help). Many of you have commented on her spirit, and how gutsy she is: I agree. Some of you have noticed when she is feeling a little low, and have tried to listen to what she needs - even if all that is is listening, or cutting her toenails, or remembering to wipe your feet before you come into her house when it's raining out, and I could not appreciate it more. She's a special lady, my grandmother, and it's nice to know you all think so too.
With my very sincere thanks,
NTE
Thursday, July 14, 2011
Sincerely, NTE
Dear Internets,
Thank you so very much for all of your wonderful, fabulous, fantastic links on today, Harry Potter Day! I am quite enjoying them. So much so that I am going to share some of them here, in case anybody else has missed out.
Zoot, who wrote the original template I used for this blog, so I've been reading her for at least six years, and her older son are adorable here. Cheers for tolerant teenagers.
Jennie culls through the Collective's archives for some of the most amazing Harry Potter-related posts ever.
s. e. smith (posting at Tiger Beatdown) talks about accessibility - or lack thereof - and why it is a bitch for people who like things or want to be happy for a little while that nobody (with the power to change things) cares about it very much.
Gretchen Alice compiled the Harry Potter project, full of other people's stories about their HP experiences. (Which I meant to contribute to, but just didn't get around to)
and Tumblr, dear Tumblr is chock full of magic today as it is every day.
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Dear Chunkys,
You are not to be thanked for having only one 2-D version available (and pre-sold) for your midnight showings of Harry Potter and the Deathly Hallows Pt2. Some of us require 2-D versions, and also really appreciate being able to sit in comfortable chairs for close to three hours. Yours is the only local theater that is truly accessible to me, on most days, and you went and ruined it by insisting on 3-D (which is completely inaccessible, unfortunately).(Please see Tiger Beatdown link, above.) Since I have to choose between a Fibro-flare and unmanageable migraine & dizziness, I'm going to go with the flare, and take my business elsewhere for the show. But bad call, Chunkys; bad call.
(PS - I will be attempting to take my nephew to the same movie sometime next month - see if you can figure this out better for next time, won't you?)
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Dear Other Movie Theaters,
I do not really like you, because your chairs are very uncomfortable, and I do not have the option of ignoring that. You are also often inaccessible in other ways, and to many people other than myself. I recommend that you read the Tiger Beatdown link above, as well, and try to remedy that ASAP. As for tonight, I would appreciate it if you did your best to not be so stinking uncomfortable that I am unable to focus on the movie... there is much crying and squeeing to be done, and - while I realize your place of business generally forgets that people like me exist - I want to do my share. Also, on a more positive note, thank you for adding 2-D showings to your midnight offerings - it is much appreciated.
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Dear Fibro-flare,
I know that you are making yourself at home, post-SisterCh's shower and family bad news, but I'd rather you didn't. As a matter of fact, should you choose to abandon me, I would be most grateful. In the meantime: do not mess up my very last chance to attend a midnight showing of Harry Potter... I would be most displeased. You wouldn't like me when I'm angry.
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Dear Readers,
Hello! Have you read all the fabulous Harry Potter posts the internets are sharing with us today? In case you were wondering, I am wicked excited about attending the midnight showing tonight, and super psyched about the whole thing. We've talked before about my Harry Potter love, but I'm going to try not to rehash all of that right now (in order to refrain from writing about how 'magical' the whole thing is). Suffice it to say that the fact that it is coming to an end - the original series and all that goes with it - is bittersweet, for sure.
My family has had a bittersweet week itself - SisterCh's shower was beyond amazeballs - a lot of hard work (SisterJ rocked it out of the park, SisterK really showed up at the last minute and helped us pull it out), a few cranky "I don't play shower games"-ers (neither do I - but if there are games, the least you could do is pretend it isn't going to infect you with something), and a mess I've barely begun to clean, but still - she was quite happy, and people were definitely impressed - I'm going to have to steal some of the pictures SisterJ took, because I'm sure the only ones I got were of present-opening, but trust me, it went really well, even if said Fibro-flare tried to make me miserable (Fail!). The bitter came, unfortunately, later that same day, when we found out that my uncle - who was quiet and funny and far away - lost his battle with brain cancer. He is the fourth of my grandmother's nine children to die in the past twelve years, and the only one whose death we were (mostly) prepared for, but it's still been tough. To sit with my grandmother, and hear her talk about being superfluous and wondering why "He" would keep doing this to her. To hear from all the cousins and aunts and uncles who are grieving and remembering fathers, mothers, brothers, gone. To live through it all, again & to know that there'll be more grieving coming, and just want to run away and hide, and not have to face any of it. It's not an immediate loss, for most of us - because he was the recluse of the bunch, for sure - but it's still a loss, and I'm sick of losing.
Ahem. So - The movie better be amazing (and I have heard that it is), because it feels like I've been waiting for-ever for it, and for the chance to go to the midnight show (sans costume, unfortunately: things came up - although I'd make a pretty good Bellatrix, if I just didn't brush my hair), but mostly because I just need it right now. I just need the magic (crap: puns, there is no avoiding them when it comes to this subject: sorry!) and connectedness and community and love. I need the fandom and the characters, and the knowing that there are a million other people sitting out there in the dark somewhere, tonight, crying their way through the Forbidden Forest with me.
Total bonus is that I get to go with SisterK, seeing as how she's moving away in a couple weeks and is all "being a grown up" now and stuff. She was younger than my Oldest Nephew is now when we (BigBrother & I ) took her to the first one. She was eleven - just like Harry - when she started reading the books. And I'm pretty sure she's the only one in my family (besides me) who is still disappointed that no owl ever showed up for her. She got her drivers license (way late) especially for this - well, this and the fact that she has to drive halfway across the country in a few weeks, but let's just say it was for this. And I'm going to buy really expensive popcorn and not care at all.
I've been seeing a lot of "Thank you, Harry!" or "Thank you, Jo!" type posts around, and I'm in love with them all. Because those are my people - people who get that books and movies are more than words and pictures, and that characters can be true friends and stories can be more powerful than you can imagine. People who understand that the gift of forgetting about your own life for a little while - no matter how good or bad it may be - is a treasure. And who don't take it for granted.
Technically, I was 'too old'* for Harry Potter - it wasn't my childhood, or even my teenage-hood. I started reading them as they came out, but it wasn't until college. They've been important to me, just the same. Sharing it with my sisters, even though they were only kind of into it; sharing it with my nephew, even though he reads s o o o s l o w l y; battling my brother to get back my copy of the last book; laying on a bed with SisterK, trying to read more slowly so the day wouldn't end: these aren't things that I take lightly or will ever forget. It's good for me, today, this week, to have those things to remember & it's hard for me to believe that they all came about because one lady decided to start writing things down in a coffee shop somewhere.
To someone who loves words as much as I do, that is pretty much a miracle. That the writing down of words; the creation of a universe so different from our own, and yet fundamentally the same; the invention of spaces and spells and specialness; the journey of a boy and his friends, could come to mean so much, to so many.
It won't be the end of the world, when there's no more new Harry Potter movies, just as the world didn't end when George Lucas decided there'd been enough Star Wars movies (of course, some people rejoiced, but that's a little bit off topic), but that doesn't matter - it doesn't make it less sad that there's nothing new coming down the line. It's ok that it's sad - that's life. But the best part is, fifteen years ago, I'd never heard of Harry Potter, and neither had anybody else, really. So there's always the possibility that tomorrow, some other journey will start, and we'll all fall in love with somebody else. That's life too: exciting and surprising.
So I'll go tonight to the midnight show (my first! midnight showing!) and I'll try my best to have an amazing time & knowing that it's not the end of the world, and that it will be incredibly bittersweet. And I'll love every minute of it, and be thankful that I'm here to enjoy it.
Miss you! Be back soon!
Thank you so very much for all of your wonderful, fabulous, fantastic links on today, Harry Potter Day! I am quite enjoying them. So much so that I am going to share some of them here, in case anybody else has missed out.
Zoot, who wrote the original template I used for this blog, so I've been reading her for at least six years, and her older son are adorable here. Cheers for tolerant teenagers.
Jennie culls through the Collective's archives for some of the most amazing Harry Potter-related posts ever.
s. e. smith (posting at Tiger Beatdown) talks about accessibility - or lack thereof - and why it is a bitch for people who like things or want to be happy for a little while that nobody (with the power to change things) cares about it very much.
Gretchen Alice compiled the Harry Potter project, full of other people's stories about their HP experiences. (Which I meant to contribute to, but just didn't get around to)
and Tumblr, dear Tumblr is chock full of magic today as it is every day.
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Dear Chunkys,
You are not to be thanked for having only one 2-D version available (and pre-sold) for your midnight showings of Harry Potter and the Deathly Hallows Pt2. Some of us require 2-D versions, and also really appreciate being able to sit in comfortable chairs for close to three hours. Yours is the only local theater that is truly accessible to me, on most days, and you went and ruined it by insisting on 3-D (which is completely inaccessible, unfortunately).(Please see Tiger Beatdown link, above.) Since I have to choose between a Fibro-flare and unmanageable migraine & dizziness, I'm going to go with the flare, and take my business elsewhere for the show. But bad call, Chunkys; bad call.
(PS - I will be attempting to take my nephew to the same movie sometime next month - see if you can figure this out better for next time, won't you?)
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Dear Other Movie Theaters,
I do not really like you, because your chairs are very uncomfortable, and I do not have the option of ignoring that. You are also often inaccessible in other ways, and to many people other than myself. I recommend that you read the Tiger Beatdown link above, as well, and try to remedy that ASAP. As for tonight, I would appreciate it if you did your best to not be so stinking uncomfortable that I am unable to focus on the movie... there is much crying and squeeing to be done, and - while I realize your place of business generally forgets that people like me exist - I want to do my share. Also, on a more positive note, thank you for adding 2-D showings to your midnight offerings - it is much appreciated.
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Dear Fibro-flare,
I know that you are making yourself at home, post-SisterCh's shower and family bad news, but I'd rather you didn't. As a matter of fact, should you choose to abandon me, I would be most grateful. In the meantime: do not mess up my very last chance to attend a midnight showing of Harry Potter... I would be most displeased. You wouldn't like me when I'm angry.
----------------
Dear Readers,
Hello! Have you read all the fabulous Harry Potter posts the internets are sharing with us today? In case you were wondering, I am wicked excited about attending the midnight showing tonight, and super psyched about the whole thing. We've talked before about my Harry Potter love, but I'm going to try not to rehash all of that right now (in order to refrain from writing about how 'magical' the whole thing is). Suffice it to say that the fact that it is coming to an end - the original series and all that goes with it - is bittersweet, for sure.
My family has had a bittersweet week itself - SisterCh's shower was beyond amazeballs - a lot of hard work (SisterJ rocked it out of the park, SisterK really showed up at the last minute and helped us pull it out), a few cranky "I don't play shower games"-ers (neither do I - but if there are games, the least you could do is pretend it isn't going to infect you with something), and a mess I've barely begun to clean, but still - she was quite happy, and people were definitely impressed - I'm going to have to steal some of the pictures SisterJ took, because I'm sure the only ones I got were of present-opening, but trust me, it went really well, even if said Fibro-flare tried to make me miserable (Fail!). The bitter came, unfortunately, later that same day, when we found out that my uncle - who was quiet and funny and far away - lost his battle with brain cancer. He is the fourth of my grandmother's nine children to die in the past twelve years, and the only one whose death we were (mostly) prepared for, but it's still been tough. To sit with my grandmother, and hear her talk about being superfluous and wondering why "He" would keep doing this to her. To hear from all the cousins and aunts and uncles who are grieving and remembering fathers, mothers, brothers, gone. To live through it all, again & to know that there'll be more grieving coming, and just want to run away and hide, and not have to face any of it. It's not an immediate loss, for most of us - because he was the recluse of the bunch, for sure - but it's still a loss, and I'm sick of losing.
Ahem. So - The movie better be amazing (and I have heard that it is), because it feels like I've been waiting for-ever for it, and for the chance to go to the midnight show (sans costume, unfortunately: things came up - although I'd make a pretty good Bellatrix, if I just didn't brush my hair), but mostly because I just need it right now. I just need the magic (crap: puns, there is no avoiding them when it comes to this subject: sorry!) and connectedness and community and love. I need the fandom and the characters, and the knowing that there are a million other people sitting out there in the dark somewhere, tonight, crying their way through the Forbidden Forest with me.
Total bonus is that I get to go with SisterK, seeing as how she's moving away in a couple weeks and is all "being a grown up" now and stuff. She was younger than my Oldest Nephew is now when we (BigBrother & I ) took her to the first one. She was eleven - just like Harry - when she started reading the books. And I'm pretty sure she's the only one in my family (besides me) who is still disappointed that no owl ever showed up for her. She got her drivers license (way late) especially for this - well, this and the fact that she has to drive halfway across the country in a few weeks, but let's just say it was for this. And I'm going to buy really expensive popcorn and not care at all.
I've been seeing a lot of "Thank you, Harry!" or "Thank you, Jo!" type posts around, and I'm in love with them all. Because those are my people - people who get that books and movies are more than words and pictures, and that characters can be true friends and stories can be more powerful than you can imagine. People who understand that the gift of forgetting about your own life for a little while - no matter how good or bad it may be - is a treasure. And who don't take it for granted.
Technically, I was 'too old'* for Harry Potter - it wasn't my childhood, or even my teenage-hood. I started reading them as they came out, but it wasn't until college. They've been important to me, just the same. Sharing it with my sisters, even though they were only kind of into it; sharing it with my nephew, even though he reads s o o o s l o w l y; battling my brother to get back my copy of the last book; laying on a bed with SisterK, trying to read more slowly so the day wouldn't end: these aren't things that I take lightly or will ever forget. It's good for me, today, this week, to have those things to remember & it's hard for me to believe that they all came about because one lady decided to start writing things down in a coffee shop somewhere.
To someone who loves words as much as I do, that is pretty much a miracle. That the writing down of words; the creation of a universe so different from our own, and yet fundamentally the same; the invention of spaces and spells and specialness; the journey of a boy and his friends, could come to mean so much, to so many.
It won't be the end of the world, when there's no more new Harry Potter movies, just as the world didn't end when George Lucas decided there'd been enough Star Wars movies (of course, some people rejoiced, but that's a little bit off topic), but that doesn't matter - it doesn't make it less sad that there's nothing new coming down the line. It's ok that it's sad - that's life. But the best part is, fifteen years ago, I'd never heard of Harry Potter, and neither had anybody else, really. So there's always the possibility that tomorrow, some other journey will start, and we'll all fall in love with somebody else. That's life too: exciting and surprising.
So I'll go tonight to the midnight show (my first! midnight showing!) and I'll try my best to have an amazing time & knowing that it's not the end of the world, and that it will be incredibly bittersweet. And I'll love every minute of it, and be thankful that I'm here to enjoy it.
Miss you! Be back soon!
Sunday, November 14, 2010
"...the family disease of alcoholism... made us 'co-victims', those who take on the characteristics of the disease without ever taking a drink"*
Day 14: A letter to a hero who has let you down
I wasn't going to write this letter, but ... I didn't feel that I could skip it, since I'm trying to hold myself accountable for things. And then I thought, well, write about Obama, and how he's disappointed you as president (true), but there was no getting around the fact that if I wrote that letter (which I have composed many times in my head), it would just be a cop out: Obama is a great person, and while I want him to be an extraordinary leader, I've never considered him a hero of mine.
Instead, I decided to go exactly where I didn't want to go, and be glad to get it said here, where (almost) nobody who knows the people involved would read it. There are things I should have said that need saying, people in my life who I wish could've remained untarnished heroes to me.
The fact that growing older means seeing another side to things doesn't always mean you forget how it felt when you were younger. I don't even think it should. It's important that I remember that I once was a little girl who loved her daddy, and whose daddy hurt her very badly. A young woman who trusted that her big brother was smart enough to not stomp on her heart, and who was (unfortunately) proven wrong. A daughter who cared enough about her parents to tell them that they were ruining their relationships with everyone around them, even if those warnings were met with harshness and hurt. A friend who tried to point her friends in the right direction, but wound up watching as they stumbled the other way instead.
However, I'm going to preemptively apologize to you, the actual readers of this letter: It started off as one thing and sort of snowballed into something else. Instead of the one person I had intended to write the letter to, I wound up with a whole lot of heroes who had let me down, and they sort of made themselves known as I was going along. So the tense changes, and apparent contradictions, and utter... incomprehensibility of some portions of this letter are my own fault, but I chose to leave them in, because they meant something to me. I'm sorry if that makes it more difficult for all of you.
Dear ___________,
Let me start with this - perhaps, I understand better now, as an adult, the urge to slip into oblivion. The urge to just be numb, and not feel the pain that is life. I can understand that, and at the same time condemn you for doing it.
I can see now that there are things you may have done or that happened to you in your life that you would rather forget, however momentarily. I can even, with hindsight, see that it was those things, and not me, or my lack of something, that made you turn to the substance of your choice, no matter how it felt at the time.
But I can't ever forget that you made that choice, those choices. That you are continuing to make that choice, regardless of what I say or how I feel. That your choice took you away from me, or that it is putting space between us. An unending space, a gulf that I can't imagine ever being able to bridge or span or ford. And that I can't make you see that your choices are harmful to you and to those around you.
When I was a kid, you were ... everything. Two everythings. Three everythings. Four everythngs. All the people a little girl looks up to, the people who are supposed to do their best to look out for her, that she's supposed to be able to count on. And that four of my everythings would make the same choices, would, one by one, abandon me in a way that was heart-freezingly painful, would pick a substance over me (no matter that that isn't what you think/thought you were doing: it is what happened from my point of view) has been soul crushing.
I don't think I've made that clear enough in person, when I've had the chance, so here, let me repeat it (Yes, in the safety of this space that you will never read it, but at least it will be said): You crushed me.
You each did it individually, and that can not be overlooked, but the group of you together? Each making your own individual choices to turn away from our family and towards something ... else. Well, what that does to a girl, to a young woman, to a woman, you'll just never know.
Did you know it would end us? Did you know that it would ruin everything we had? If you had known, could you have chosen differently? How is it possible that, given all the examples, given the example of each other, you didn't know how badly it would hurt - not just me, but you, and all of us?
If a hero is someone you can look up to, there are still a lot of ways in which you all are heroic to me - your service, your support, your love, your example, your hearts, your willing hands, your quick minds - but it is that one way in which you have let me down that I have talked about today. I could sing your praises in a million different ways, but for today, just for this letter, I wanted you to know just how badly you let me down.
But I still love/d you, tarnish and all.
Love, NTE
*Adult Children of Alcoholics, World Service Organization, Inc.
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Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself
I wasn't going to write this letter, but ... I didn't feel that I could skip it, since I'm trying to hold myself accountable for things. And then I thought, well, write about Obama, and how he's disappointed you as president (true), but there was no getting around the fact that if I wrote that letter (which I have composed many times in my head), it would just be a cop out: Obama is a great person, and while I want him to be an extraordinary leader, I've never considered him a hero of mine.
Instead, I decided to go exactly where I didn't want to go, and be glad to get it said here, where (almost) nobody who knows the people involved would read it. There are things I should have said that need saying, people in my life who I wish could've remained untarnished heroes to me.
The fact that growing older means seeing another side to things doesn't always mean you forget how it felt when you were younger. I don't even think it should. It's important that I remember that I once was a little girl who loved her daddy, and whose daddy hurt her very badly. A young woman who trusted that her big brother was smart enough to not stomp on her heart, and who was (unfortunately) proven wrong. A daughter who cared enough about her parents to tell them that they were ruining their relationships with everyone around them, even if those warnings were met with harshness and hurt. A friend who tried to point her friends in the right direction, but wound up watching as they stumbled the other way instead.
However, I'm going to preemptively apologize to you, the actual readers of this letter: It started off as one thing and sort of snowballed into something else. Instead of the one person I had intended to write the letter to, I wound up with a whole lot of heroes who had let me down, and they sort of made themselves known as I was going along. So the tense changes, and apparent contradictions, and utter... incomprehensibility of some portions of this letter are my own fault, but I chose to leave them in, because they meant something to me. I'm sorry if that makes it more difficult for all of you.
Dear ___________,
Let me start with this - perhaps, I understand better now, as an adult, the urge to slip into oblivion. The urge to just be numb, and not feel the pain that is life. I can understand that, and at the same time condemn you for doing it.
I can see now that there are things you may have done or that happened to you in your life that you would rather forget, however momentarily. I can even, with hindsight, see that it was those things, and not me, or my lack of something, that made you turn to the substance of your choice, no matter how it felt at the time.
But I can't ever forget that you made that choice, those choices. That you are continuing to make that choice, regardless of what I say or how I feel. That your choice took you away from me, or that it is putting space between us. An unending space, a gulf that I can't imagine ever being able to bridge or span or ford. And that I can't make you see that your choices are harmful to you and to those around you.
When I was a kid, you were ... everything. Two everythings. Three everythings. Four everythngs. All the people a little girl looks up to, the people who are supposed to do their best to look out for her, that she's supposed to be able to count on. And that four of my everythings would make the same choices, would, one by one, abandon me in a way that was heart-freezingly painful, would pick a substance over me (no matter that that isn't what you think/thought you were doing: it is what happened from my point of view) has been soul crushing.
I don't think I've made that clear enough in person, when I've had the chance, so here, let me repeat it (Yes, in the safety of this space that you will never read it, but at least it will be said): You crushed me.
You each did it individually, and that can not be overlooked, but the group of you together? Each making your own individual choices to turn away from our family and towards something ... else. Well, what that does to a girl, to a young woman, to a woman, you'll just never know.
Did you know it would end us? Did you know that it would ruin everything we had? If you had known, could you have chosen differently? How is it possible that, given all the examples, given the example of each other, you didn't know how badly it would hurt - not just me, but you, and all of us?
If a hero is someone you can look up to, there are still a lot of ways in which you all are heroic to me - your service, your support, your love, your example, your hearts, your willing hands, your quick minds - but it is that one way in which you have let me down that I have talked about today. I could sing your praises in a million different ways, but for today, just for this letter, I wanted you to know just how badly you let me down.
But I still love/d you, tarnish and all.
Love, NTE
*Adult Children of Alcoholics, World Service Organization, Inc.
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Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself
Friday, April 16, 2010
Recently, I received an advocacy alert from one of my various CFS/ME groups, concerning the possible inclusion of CFS in the newest version of the DSM. The DSM - Diagnostic and Statistical Manual of Mental Disorders - is the American Psychiatric Associations' guidebook when it comes to mental illnesses, and the idea that there would be a category under which CFS might (or could realistically) be grouped is terrifying. It's a huge step backwards in the fight for funding, understanding, treatment, and all of the other things patients with CFS often don't have the energy (or time, or resources) to continue to battle without end.
I took a while to craft a letter I felt managed to point out all of the issues that are inherent in such an inclusion, while also trying really hard not to abelist towards mental illnesses and their severity either: I really didn't want to say "Don't call us crazy!" and expect that that would be a worthwhile argument. It isn't - crazy is a word I'm trying to erase from my vocabulary, in the first place, but in the second, there's nothing worse about being mentally ill than there is about having any other form of chronic illness. So I didn't want my letter to make it seem as if I were saying, "Well, we have all these issues, but we're still better than that": Instead I wanted to make clear that having a classification that could include CFS (and, as you will see in my letter, just about any chronic illness) is a setback because it does not allow for a true understanding of our disease process - and that can have dire consequences. At least, that's the point I hope I was making... I'm open to (constructive) criticism, if you have any before Monday, which is the deadline for comments on this particular version of the diagnostic criteria.
You can find the full criteria Here, as well as a link to where you can submit your own comments.
I took a while to craft a letter I felt managed to point out all of the issues that are inherent in such an inclusion, while also trying really hard not to abelist towards mental illnesses and their severity either: I really didn't want to say "Don't call us crazy!" and expect that that would be a worthwhile argument. It isn't - crazy is a word I'm trying to erase from my vocabulary, in the first place, but in the second, there's nothing worse about being mentally ill than there is about having any other form of chronic illness. So I didn't want my letter to make it seem as if I were saying, "Well, we have all these issues, but we're still better than that": Instead I wanted to make clear that having a classification that could include CFS (and, as you will see in my letter, just about any chronic illness) is a setback because it does not allow for a true understanding of our disease process - and that can have dire consequences. At least, that's the point I hope I was making... I'm open to (constructive) criticism, if you have any before Monday, which is the deadline for comments on this particular version of the diagnostic criteria.
I'm writing to express my concern about the possible inclusion of Chronic Fatigue Syndrome as a "functional somatic syndrome", under the newly created category of Complex Somatic Symptom Disorder in the DSM-V.
First, I take issue with the vague and almost universally applicable criteria under which the CSSD could be diagnosed. Symptoms like
"A belief in the medical seriousness of their symptoms despite evidence to the contrary"; "Normal bodily symptoms are viewed as threatening and harmful"; "High level of health-related anxiety; "A tendency to assume the worst about their health (catastrophizing)"; &"Health concerns assume a central role in their lives." are so ambiguous as to be useless. Under this criteria, I would say that ANY chronic illness could be included as a somatic disorder. If you have heart disease, your "health concerns" will - if you intend to survive - most likely assume a "central role" in your life, and many previously "normal" symptoms could now be considered as potential threats. If you are diagnosed with cancer or HIV, I'm going to assume that a certain amount of "catastrophizing" would take place - there have been numerous books written about how a diagnosis of such an illness is not a death sentence: Would there be a need for those books if people didn't automatically assume that certain illnesses could mean the worst for them?
Creating this new category is to dismiss the very real worries and concerns of ANY patient, with ANY illness: It fails to take into account that, when confronted by an illness you cannot predict, you may sometimes become discouraged, fear the worst, or wonder if your newest ache or pain will be as devastating to your life as the previous one was. It takes what is human about a patient - the fact that they might make mistakes, or become anxious about something that is having an intense impact on their life - and turns it into something that is abnormal, something that should be seen as an illness. In so doing, you erase the humanity of all individuals with chronic illnesses.
If you fail to see that some of these behaviors - for example, having a high level of "health-related anxiety" - can, in fact, be positive coping mechanisms, you are invalidating the needs of a chronically ill patient. If a patient is proactive - if she sets a schedule for taking her meds, follows a nutritious diet, incorporates periods of rest and exercise as needed throughout the course of her day, & keeps up on the newest treatments and research regarding her disease, then yes: it is fair to say that "Health concerns are a central role in her life." However this is only to her benefit, and EXACTLY what doctors advise their chronically ill patients (and, with specific changes, their well patients) to do, no matter what their diagnosis might be. And yet, you plan to classify that as yet another symptom for a "disorder" that has no real medical definition. With "symptoms" so broadly and subjectively defined, the potential for misdiagnosis, and abuse towards patients whose illness are atypical, medically complicated, misunderstood, or rare is extremely high and frustratingly preventable...by simply excluding such a code, which would likely do more harm than good.
What other forms of harm, besides the very real danger of ignoring the physical deterioration of a patient due to misdiagnosis, might occur? Consider a recent study out of the Netherlands, which concluded that it is "unethical to treat patients with ME/CFS with ineffective, non-evidence-based and potentially harmful "rehabilitation therapies", such as Cognitive Behavior Therapy and Graded Exercise Therapy", two of the most widely used therapies for ME/CFS in the UK, and both recommended treatments for various current forms of somatoform disorders, or the fact that most SSRIs (which are also considered applicable treatments for somatoform disorders), tend not to be effective in treating CFS, and carry the risks of many serious side effects.
Somatiziation is the physical expression of psychological symptoms, and for the APA to claim, as experts and medical authorities, and with no room left for doubt, that the symptoms of CFS begin as psychological is not only to contradict the World Health Organization (which classifies it as neurological in basis), but also the US Centers for Disease Control (which stated, in 2006, that "There were no other factors, psychological or biological, that held up under thorough analysis"). It ignores the fact that in the UK ME/CFS patients have been banned from donating blood for over 20 years, that they were recently prevented from doing so in Canada, and that they are actively discouraged from doing so in the US. It also does not reflect a complete understanding of most of the current scientific research including viral implications, numerous biomarker studies; studies with immune system findings, neurological findings, CNS findings, genetic findings; and the complexity and interconnectivity of a disease like CFS. And it ignores the voices of the many experts and medical organizations focused on CFS research, including, but not limited to: Drs. Bell & Cheney, Dr. Komaroff, The Whittemore Peterson Institute, Dr. Klimas, & many others, who continue to search for the cause, treatment, and possible cures for this horrible disease.
I fail to see why, when biological science is stumped (or, in the case of CFS, more likely just ridiculously underfunded), putting the blame in the heads of patients is considered an acceptable solution. To include a definition of CSSD that could be applied to conditions like Chronic Fatigue Syndrome or Fibromyalgia is to forget the long - and embarrassing history - of unjust accusations of patients - or patient's families - "creating" their own illnesses - In the not too distant past, mothers were blamed for Autism, Type A personalities were blamed for causing ulcers, and both Multiple Sclerosis and Epilepsy have long been tainted by the incorrect assumption that they were caused by patient behavior.
Also important to note is the disconnect between medical science's understanding of men's bodies (and, therefore, diseases that are more likely to strike men) vs medical science's understanding of women's bodies (and, therefore, diseases, like CFS and FM, that are disproportionately more likely to affect women). From the fact that the term "neurasthenia" (aka "the vapors") - a term which the DSM itself tossed out years ago - is still being used in the UK to label CFS patients, to the woefully inadequate funding and research into diseases that have high populations of female patients, and how this would only contribute to the misuse of a CSSD coding.
I wish to be clear; Of course, for any person, chronically ill or not, there can be physical effects of psychological stress - You have only to suffer through one tension headache or witness a child so nervous that he loses his breakfast to know that this is true. But to state categorically that all of the symptoms of CFS patients (which can include sore throats, chronic infections, post-exertional fatigue, abdominal pain, unrefreshing sleep, irregular heartbeat, vertigo, muscle and joint pain, mental confusion, tender lymph nodes, allergies, night sweats, hypersensitivity to light, sound, smells, heat or cold, abdominal pain, blood pressure problems, and many, many more) can - definitively - be attributed to psychological factors, is to propose and support a falsehood.
I'd also like to refer you to a recent "Submission Re: DSM-V and ME/CFS" compiled by Professor Malcom Hooper and Margaret Williams of the 25% ME group (submitted 3-20-10) for an enlightening discussion about who would benefit from the inclusion of CFS as a CSSD, and the conflicts of interest evident in the DSM-V Somatic Symptom Disorder Work Group. (This work also includes a good summary of why the criteria are "so wide & non-specific that they have little clinical utility,"which I have already discussed.)
In conclusion, I urge you to consider the consequences of such an inaccurate and regressive inclusion - the potential for misuse/abuse/overuse of a non-specific coding for millions of affected patients; years of unhelpful and potentially dangerous drugs and therapies for patients who go to their physicians looking for answers; further & inhumane setbacks in the search for the real illness that is affecting these individuals, as well as the research that is necessary to find a cause, treatment & cure; and putting the DSM-V on the wrong side of medicine (and eventually, history).
I appreciate you taking the time to read my thoughts and concerns, and hope that you will take them into consideration as you make your final recommendations.
Sincerely, etc etc.
You can find the full criteria Here, as well as a link to where you can submit your own comments.
Wednesday, March 31, 2010
I am attempting
to write a letter of recommendation for SisterCh, in regards to an apartment she and her fiance are hoping to rent. It is tricky to do.
Particularly if I want to be honest. (It's a good thing I have my BS, because I have learned the art of putting a kernel of truth in the best possible light.)
All the advice says things like "tell how reliable she is, that she pays her bills on time." But I can't say that I have any experience of that personally - she doesn't pay rent here, and only just paid off the money she borrowed from me for SisterJ's wedding (yeah, that's nearly 2 years and various weekend vacations for her later). But, I do know that she paid her rent on time and in full when she lived in a condo before, so I can say that.
I am absolutely able to rave about her turning a temp position that was only supposed to last 6 months into a full-time position with full benefits and a raise 3 years later. I am immensely proud of her for that, and I know that she deserves a lot of kudos for it, so that definitely goes in. (2 paragraphs down, one to two more to go).
Next advice: "Discuss how neighborly she is" Um Yeah - Roadblock. See, SisterCh and I have a long and complicated history of her being particularly unneighborly, in my opinion.
I have a lot of needs that other people have to take into consideration, and SisterCh has not always understood, embraced, or really cared about that. She's been the hardest of my siblings to educate about my condition, hands down. Mostly, I think, because she was really young when I got sick, and I'm pretty sure she has a lot of resentment about how much of our parents' (mostly our mom's) attention I managed to siphon off by being, you know, nearly dead. I know part of her is still very much in the whole "suck it up"/"get over it already" camp, and her dismissive attitude has been incredibly hurtful to me for years.
Which isn't to say she hasn't improved. Because, in a lot of ways, she has: the smell thing is still a battle occasionally, but it's not a daily battle, it's not the constant me being trapped in my room until an hour after she leaves for work nonsense that it used to be. She may still roll her eyes when I say something is bothering me, but we don't scream and shout about it as much as we used to. We've both gotten a lot better at walking away before our feelings get too trampled (mostly).
Nowadays, she sends me e-mails when she finds unscented lip glosses, offers to share her work discount with me when I tell her I'm searching for a new computer, or posts a link to some FM article where they talk about vitamins (:sigh: on that last one, but at least she's trying). And she nearly decked a waitress last week when she patted me on the back, so that's a plus.
So, yeah, she's growing up. We both are, and it's helping us.
She's also taking responsibility for her fiance's kids, and I think that, in the process, she's getting to be more mature & understanding, and I hope that our relationship will continue to improve as we both get older, but she's still the same girl who told me I was a selfish bitch because I needed her to stop spraying her perfume in the house. She's still the same girl who rolls her eyes when I say she doesn't understand how lucky she is to not have to worry about whether or not a ride in the car will make her head spin for the next three days, or complains when I open the window to air out a (freezing but) smelly house. Or who stops speaking to her sister without even realizing that the thing they are 'fighting' about is not the end of the world.
Which is why you shouldn't ask your sister to write a letter of recommendation for you, I think. Because sisters' relationships are too complex. Because being her sister means I would kill for her, but sometimes I can't stand to be in the same room as her.
I could write about how much I love her, and how proud I am of her, and how brave I think she was the time she stood up to our dad and told him to fuck off (he really deserved it), but I don't think that that will get her the apartment, really. I could write about how she and SisterJ used to be thick as thieves (actual, literal thieves who stole all my good toys when they thought I wasn't looking), but now they just can't figure out how to speak the same language & that it hurts my heart, but that also doesn't really seem like what they are looking for.
So, instead, I'll write things like "In her previous living spaces, she took pride in maintaining a lovely home, always managing to keep her areas clean and tidy." Which, if you cold see her room right now, would seem like an outright LIE, but I know that when she lived in the condo, she was impeccable, so it technically isn't - I did say "previous" living spaces.
Back to work, trying to make 24 years of sisterhood & obsessive love (Do you think it would help if I mentioned how, when she was a little girl, she was really shy and I lugged her around on my hip for the better part of three years? Nah, I didn't think so either.) sound totally positive and not at all twisty and complex.
Particularly if I want to be honest. (It's a good thing I have my BS, because I have learned the art of putting a kernel of truth in the best possible light.)
All the advice says things like "tell how reliable she is, that she pays her bills on time." But I can't say that I have any experience of that personally - she doesn't pay rent here, and only just paid off the money she borrowed from me for SisterJ's wedding (yeah, that's nearly 2 years and various weekend vacations for her later). But, I do know that she paid her rent on time and in full when she lived in a condo before, so I can say that.
I am absolutely able to rave about her turning a temp position that was only supposed to last 6 months into a full-time position with full benefits and a raise 3 years later. I am immensely proud of her for that, and I know that she deserves a lot of kudos for it, so that definitely goes in. (2 paragraphs down, one to two more to go).
Next advice: "Discuss how neighborly she is" Um Yeah - Roadblock. See, SisterCh and I have a long and complicated history of her being particularly unneighborly, in my opinion.
I have a lot of needs that other people have to take into consideration, and SisterCh has not always understood, embraced, or really cared about that. She's been the hardest of my siblings to educate about my condition, hands down. Mostly, I think, because she was really young when I got sick, and I'm pretty sure she has a lot of resentment about how much of our parents' (mostly our mom's) attention I managed to siphon off by being, you know, nearly dead. I know part of her is still very much in the whole "suck it up"/"get over it already" camp, and her dismissive attitude has been incredibly hurtful to me for years.
Which isn't to say she hasn't improved. Because, in a lot of ways, she has: the smell thing is still a battle occasionally, but it's not a daily battle, it's not the constant me being trapped in my room until an hour after she leaves for work nonsense that it used to be. She may still roll her eyes when I say something is bothering me, but we don't scream and shout about it as much as we used to. We've both gotten a lot better at walking away before our feelings get too trampled (mostly).
Nowadays, she sends me e-mails when she finds unscented lip glosses, offers to share her work discount with me when I tell her I'm searching for a new computer, or posts a link to some FM article where they talk about vitamins (:sigh: on that last one, but at least she's trying). And she nearly decked a waitress last week when she patted me on the back, so that's a plus.
So, yeah, she's growing up. We both are, and it's helping us.
She's also taking responsibility for her fiance's kids, and I think that, in the process, she's getting to be more mature & understanding, and I hope that our relationship will continue to improve as we both get older, but she's still the same girl who told me I was a selfish bitch because I needed her to stop spraying her perfume in the house. She's still the same girl who rolls her eyes when I say she doesn't understand how lucky she is to not have to worry about whether or not a ride in the car will make her head spin for the next three days, or complains when I open the window to air out a (freezing but) smelly house. Or who stops speaking to her sister without even realizing that the thing they are 'fighting' about is not the end of the world.
Which is why you shouldn't ask your sister to write a letter of recommendation for you, I think. Because sisters' relationships are too complex. Because being her sister means I would kill for her, but sometimes I can't stand to be in the same room as her.
I could write about how much I love her, and how proud I am of her, and how brave I think she was the time she stood up to our dad and told him to fuck off (he really deserved it), but I don't think that that will get her the apartment, really. I could write about how she and SisterJ used to be thick as thieves (actual, literal thieves who stole all my good toys when they thought I wasn't looking), but now they just can't figure out how to speak the same language & that it hurts my heart, but that also doesn't really seem like what they are looking for.
So, instead, I'll write things like "In her previous living spaces, she took pride in maintaining a lovely home, always managing to keep her areas clean and tidy." Which, if you cold see her room right now, would seem like an outright LIE, but I know that when she lived in the condo, she was impeccable, so it technically isn't - I did say "previous" living spaces.
Back to work, trying to make 24 years of sisterhood & obsessive love (Do you think it would help if I mentioned how, when she was a little girl, she was really shy and I lugged her around on my hip for the better part of three years? Nah, I didn't think so either.) sound totally positive and not at all twisty and complex.
She is your mirror, shining back at you with a world of possibilities. She is your witness, who sees you at your worst and best, and loves you anyway. She is your partner in crime, your midnight companion, someone who knows when you are smiling, even in the dark. She is your teacher, your defense attorney, your personal press agent, even your shrink. Some days, she's the reason you wish you were an only child. Barbara Alpert
Wednesday, March 24, 2010
What I would say, if I were brave enough
Dear Facebook Friends,
I am genuinely glad that you are expecting your (insert number here) child. You are my friend, and I'm so glad for you (especially those of you that have been TTC for quite a while). I will happily attend baby showers and baptisms, and am already shopping for a gift to take to the hospital. But I am also sickeningly jealous, because the only thing I want more than getting well is a family of my own. So if you decide to complain about a)the gender of your baby or b)the fact that you are a little more tired than you usually are, you'll have to excuse me if I don't join in on the pity party. I know you have a right to how you feel, but since right now I feel like I'd rather be you on your worst day than me on my best, I'm just going to ignore your posts for a while and come back for the big announcement.
Kind of Sorry About This, and with Lots of Love, NTE
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Dear Facebook Friends,
I am glad you get to spend your time playing games that entertain you such as Farmville, MafiaWars, Sorority House, Godfather, Wizard World, ZooPets, etc. For myself, however, I know that if I were to join you in playing any of these games, it would not go well. I have a limited amount of energy as it is, and if I get sucked into playing a highly addictive game (and I can see by the number of posts you have each day, these games are highly addictive), then I would get less than nothing accomplished. (Evidence Bejeweled Blast, and the fact that I had to uninstall it from my page, lest I get sucked in again.) So please, please stop asking me to join yourcult community: even if I liked it, it would be bad for me.
Love, NTE
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Dear people I used to know and now only sort of know because we are "friends" on Facebook,
Perhaps you are unaware of my particular life circumstances, and that is fine: I understand that we haven't been close in the 10-15 years since we've last seen each other, and so how were you to know? But if I post something about how I am feeling, or the status of my 1200th doctor's appointment of the week, or if you happen to see a picture of current-ish me (of which there should be none: although sometimes my siblings sneak them in when I am not vigilant enough) and notice that I am in a wheelchair, it is not an appropriate response for you to say things like "Damn, what happened to you?" or "Really, you're that sick? I would kill myself if that happened to me." It's called common sense, people. Rudeness is still rudeness, even if you're typing it.
Whatever, NTE
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Dear Facebook Friends who are too cutesy,
If I have to hear how your and your fiance/husband/boyfriend are head over heels, lovey dovey, to the end of the earth and back, never been in love like this before in LOVE, one more time, I might unfriend you. Just warning you. You have a right to be happy, but I have a right not to roll my eyes every time I open up my homepage, too. I am actually glad that you are in a happy and stable relationship, but if you called each other those cutesy names in real life, in public, your friends would laugh at you and walk away. So maybe you should just keep it to the private messages, and leave the "smooshy" "bestie" "Daddy" (ick) & "Snookums" (Really? Unironically?) for when you're actually seeing each other, so that I don't have to read it. Deal?
Love, NTE (See how I could say that without drawing 17 hearts in a row? You could try that too!)
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Dear Facebook addicts who tell me I don't update my status enough or think I should get a Twitter,
Honestly? Most weeks, if I updated my status daily/tweeted it would look like this:
Ow.
Ow.
Ow, plus Lil Girl is here.
Ow, am recuperating from Lil Girl.
Look, Ow & now Lil Girl is here again.
Ow, and now I have another doctor's appointment that I don't want to go to and will probably be a big waste of time.
OUCH. Doctor's appointment was a painful bust, but now I have pill number 756 to try, so we'll see if that works.
LOOK A PURPLE UNICORN.
Pill Number 756 gave me hives. And hallucinations. Am not taking it anymore.
Ow.
Actually, that's a lot more interesting than my normal week - purple unicorns are few and far between here (hives, unfortunately, are much more common). I realize that since you are working, you might have something new to talk about all the time, but for me, my life is a lot of same shit, different day. So, you should be glad that I only post things when they're actually interesting. Ow loses its meaning, after awhile.
Thanks for thinking I'm interesting, even when I'm actually not, NTE
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Dear Family Members/Friends from elementary school,
You do know I have lots of embarrassing pictures of you, right? And that I am consciously choosing not to post them? Ok, so maybe you don't want to get on my bad side, is all I'm saying.
Really.
Love, NTE
I am genuinely glad that you are expecting your (insert number here) child. You are my friend, and I'm so glad for you (especially those of you that have been TTC for quite a while). I will happily attend baby showers and baptisms, and am already shopping for a gift to take to the hospital. But I am also sickeningly jealous, because the only thing I want more than getting well is a family of my own. So if you decide to complain about a)the gender of your baby or b)the fact that you are a little more tired than you usually are, you'll have to excuse me if I don't join in on the pity party. I know you have a right to how you feel, but since right now I feel like I'd rather be you on your worst day than me on my best, I'm just going to ignore your posts for a while and come back for the big announcement.
Kind of Sorry About This, and with Lots of Love, NTE
------------------------------------------------------------------------------------
Dear Facebook Friends,
I am glad you get to spend your time playing games that entertain you such as Farmville, MafiaWars, Sorority House, Godfather, Wizard World, ZooPets, etc. For myself, however, I know that if I were to join you in playing any of these games, it would not go well. I have a limited amount of energy as it is, and if I get sucked into playing a highly addictive game (and I can see by the number of posts you have each day, these games are highly addictive), then I would get less than nothing accomplished. (Evidence Bejeweled Blast, and the fact that I had to uninstall it from my page, lest I get sucked in again.) So please, please stop asking me to join your
Love, NTE
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Dear people I used to know and now only sort of know because we are "friends" on Facebook,
Perhaps you are unaware of my particular life circumstances, and that is fine: I understand that we haven't been close in the 10-15 years since we've last seen each other, and so how were you to know? But if I post something about how I am feeling, or the status of my 1200th doctor's appointment of the week, or if you happen to see a picture of current-ish me (of which there should be none: although sometimes my siblings sneak them in when I am not vigilant enough) and notice that I am in a wheelchair, it is not an appropriate response for you to say things like "Damn, what happened to you?" or "Really, you're that sick? I would kill myself if that happened to me." It's called common sense, people. Rudeness is still rudeness, even if you're typing it.
Whatever, NTE
--------------------------------------------------------------------------------
Dear Facebook Friends who are too cutesy,
If I have to hear how your and your fiance/husband/boyfriend are head over heels, lovey dovey, to the end of the earth and back, never been in love like this before in LOVE, one more time, I might unfriend you. Just warning you. You have a right to be happy, but I have a right not to roll my eyes every time I open up my homepage, too. I am actually glad that you are in a happy and stable relationship, but if you called each other those cutesy names in real life, in public, your friends would laugh at you and walk away. So maybe you should just keep it to the private messages, and leave the "smooshy" "bestie" "Daddy" (ick) & "Snookums" (Really? Unironically?) for when you're actually seeing each other, so that I don't have to read it. Deal?
Love, NTE (See how I could say that without drawing 17 hearts in a row? You could try that too!)
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Dear Facebook addicts who tell me I don't update my status enough or think I should get a Twitter,
Honestly? Most weeks, if I updated my status daily/tweeted it would look like this:
Ow.
Ow.
Ow, plus Lil Girl is here.
Ow, am recuperating from Lil Girl.
Look, Ow & now Lil Girl is here again.
Ow, and now I have another doctor's appointment that I don't want to go to and will probably be a big waste of time.
OUCH. Doctor's appointment was a painful bust, but now I have pill number 756 to try, so we'll see if that works.
LOOK A PURPLE UNICORN.
Pill Number 756 gave me hives. And hallucinations. Am not taking it anymore.
Ow.
Actually, that's a lot more interesting than my normal week - purple unicorns are few and far between here (hives, unfortunately, are much more common). I realize that since you are working, you might have something new to talk about all the time, but for me, my life is a lot of same shit, different day. So, you should be glad that I only post things when they're actually interesting. Ow loses its meaning, after awhile.
Thanks for thinking I'm interesting, even when I'm actually not, NTE
---------------------------------------------------------------------------------
Dear Family Members/Friends from elementary school,
You do know I have lots of embarrassing pictures of you, right? And that I am consciously choosing not to post them? Ok, so maybe you don't want to get on my bad side, is all I'm saying.
Really.
Love, NTE
Sunday, April 12, 2009
In case you missed it...
There's a big kerfuffle over Amazon and its deranking of certain "adult" books. The kerfuffle being that the only books being deemed "adult" are those that contain GLBT themes and characters, and some erotica. What follows is the (3rd) draft of the e-mail I'll be sending them tomorrow... Any ideas for improvement?
Recently, I have come across numerous blog postings regarding new Amazon policies that either remove certain books from the front page searches or remove the sales rankings from certain books. According to these posts, the sole justification for the changes is the content of these books - specifically that they contain erotica; or are published by a mainly erotica publishing line; or that they contain characters who are homosexual, bisexual, or transsexual. Now, I will not pretend that I understand ranking and what it means to the sale of books, or even exactly how important it is for a book to be reachable from a front page search - I'm not in the publishing industry at all. I am, however, an avid reader, and I know that I often use your front page searches for books I am looking for, and if I don't find them there, I quickly move on to a different book. So I can see that the practice of removing certain books, imprints, and publishing lines from these searches would be detrimental to their sales.
Supposedly, these books are being adjusted based on their inclusion of "adult" material, and - while I do not condone that sort of practice at all - if that is your policy, I expect that it will be a blanket policy and apply equally to ALL books that are posted in your system. Unfortunately I'm seeing case after case where this is not what's occurring. If you were, in fact, to apply this policy to all of your books, then your search feature would become obsolete, your rankings meaningless.
Sure, lots of erotica contains "adult" material: so do lots of OTHER books: Fiction is full of "adult" material - will Lolita be losing it's rank? How about Shakespeare? What about regular romance novels that are published by mainstream publishers, rather than just those that are published under other imprints: I hardly ever notice who's published the book I am reading, but just glancing at my shelves, I know that there's more than one mainstream - bestselling - author whose work contains "adult" material: will their rankings be adjusted as well?
I'm quoting now from a blogger who's listing the books who's standings have been changed, and he writes "the only "sex scene" in The Well of Loneliness consists in its entirety of the words "And that night they were not divided."" The Well of Loneliness had it's sales rank removed, and yet I can think of more explicit sex scenes in almost everyone of my beloved Nora Roberts novels, and after checking three of her books, I see they are all still ranked. As is Playboy Nudes, Spring 2007.
And it's not just fiction - apparently, The Ultimate Guide to Pregnancy for Lesbians: How to Stay Sane and Care for Yourself from Pre-conception through Birth, 2nd Edition has lost it's ranking: I fully expect, then, that What to expect when you're expecting will be unranked from now on as well? And that to search for it, you'd have to search from Books rather than All Amazon? And what could possibly be the justification behind labeling Young Adult books as "adult" material and giving them this treatment - unless you're also going to be de-ranking books I loved in my young adulthood, too? Will Are You There God, It's Me Margaret be no longer available from the front page search?
I am shocked and saddened to learn that it is your corporate policy to discriminate. Perhaps this is, as has been suggested in the blogosphere, an extreme programming error on your company's part - a glitch where books are being removed/de-ranked based on arbitrary keyword searches. Even so, the fact that those programs would be searching for terms that include words like 'gay', 'lesbian', 'bisexual', 'transexual', or 'erotica' to the exclusion of words like 'nude' or 'graphic sex' is incredibly discriminatory, and it's not something I can support.
Personally, I don't think you should be excluding any books from the searches, as it is obvious that you can not create a filter that will give the proper "consideration to your customer base." And I think it is very shortsighted that you would even try to - I am your customer base - I'm a reader, a book reviewer, and a friend to untold authors - I was certainly not "considered" when this decision was made. As a customer, I think it's more important for me to know that I will get accurate results from my search, rather than censored results. If I type in the name of a book, and the book doesn't come up until page 5, what's the point of searching? (As an extreme example - what good would it be to me if I searched for Hamlet, and instead got Green Eggs and Ham as the first result? Hamlet, after all contains violence & paranormal elements - perhaps they would be the next keywords to be excluded?) You do a disservice to all of your customers when you pick and choose what to include in the search results.
Judging by the responses I have seen online so far, your policy is going to start costing your company a lot of money, very soon. For my part, unless I see that your policy has been quickly changed, and an apology has been issued, I am one avid reader who will begin searching for my books somewhere else. I will also no longer link to books on amazon.com through my blog, and will be removing my wish list widget from my sidebar: I cannot knowingly contribute to a site where such policies are considered as sound corporate practice, and I am not alone - I think that you will find that if you'd like to earn the title of "earth's most customer-centric company" you have quite a ways to go
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