In which I return from a LONG hiatus to complain about the election here, so that I don't set my FB feed on fire

Let's talk about the election.  Actually, let's not: I really, really don't want to, but I also literally can't think about anything else for any sustained period of time? I do not know what to do about it, so writing seems like my best bet.  Here's what I wrote to the Fishy today, re: the election.

 Thanks so much; it is ridiculously anxiety-making around here right now, for sure. I'm trying to keep it together, but it is so nice to know that other countries see how completely absurd this whole thing is, and are hoping for the best. I've done my part already, so now I just have to wait and hope that things aren't really as bad as they seem. Deep breaths!  I hope you are doing really well... in all honesty, it's probably my turn for the long email, but since I'm relying on my phone for everything since my computer finally gave up the ghost a few months ago, emails are more difficult than I'd like. (I am not nearly as efficient at thumb typing as I am at regular typing.).  (That is in no way relevant to this post, but I did want you to know why I'm not posting all that much: Phone typing is NOT good for blog production.)

Anyways, huge hugs, and a big thank you for thinking of me. This election is definitely the most anxiety producing one I've ever been through, and that takes into account that most of the time Obama was running the first time I was sure he was going to be assassinated before he could ever be inaugurated, so that tells you how bad it truly is. When a guy who believes in eugenics is one vote away from being the leader of your country- whether or not you are one of the ones whose genes are obviously inferior- I think terrified is the correct response. Now I just have to deep breathe my way through a day that most people agree is going to go the right way, and hope that nobody on our side got complacent and stayed home. Love you! Talk soon!

And I'm having discussions with NephTwo (this is the last presidential election he won't be eligible to vote in, which is blowing my mind) about Bush V Kerry - and how the fact that he got reelected has led me to this point of election anxiety, because I can't trust my fellow citizens to do what's right for the majority of us, the minorities of us, or even individual us-es.  I was 100% certain that Bush would not be reelected, but I had apparently living in some sort of Liberal Utopian Echo-chamber, where I just wasn't hearing the people who thought he was doing a good job? and deserved another term? Because all of the sudden, there we were, in Bush, Term Two.  I still have questions about that, to be honest: I have no idea how that freaking happened.  I went and looked it up, because I could not remember how close it was. 50/48 - that's it... two percentage points (and I don't even think two whole percentage points), and the balance of the world tips. 

Our world has been balanced on chads, on presidential pamphlets, on the media's portrayal of a certain candidates foibles or strengths (who you "want to have a beer with" vs who gets Swiftboated, who can "see Russia from their house" vs who's "never gonna be president now", for example), on demagogues and Supreme Court Justices alike. So, yeah, you'll have to excuse me being a little bit nervous about the fact that a person who does not believe that people like me should exist; who does not believe that - or act like - women are equal to men; who can criticize and castigate an entire race, an entire religion, and entire countries and still think that that has no impact on the greater world around him; who does not believe in equal rights for all people, should be so close to the ultimate position of power in our country. 

Even more bitter is that all the things that I believe should have disqualified him from running, let alone serving, are things that SOMEONE in my country is voting for him because of.  There is someone out there right now who thinks that he's got the right approach to Muslims, and that person isn't going away tomorrow, like Trump hopefully will. There is someone out there voting for him, and they're not bothered by the allegations of rape and sexual assault that Trump is facing. Who doesn't mind the way he's talked to Gold Star families, or the way he disrespects veterans. There is someone out there who thinks "Nuke the shit out of them" is valid foreign policy.  Who thinks "illegals" are group of subhumans, and that they don't deserve to live in the same space as the rest of us.  Who believes that 'Obamacare' is the devil, and doesn't care that it has saved my life - or the lives of hundreds of thousands of others.

And those people are all voting (as they should, although I could wish that they just haven't got the time for it today, right? That's not wishing them ill, so much as wishing them busy, which seems acceptable), and all of those people WILL STILL EXIST come tomorrow morning.  All of those people will still be our country-mates come the day after the election, and that's worrisome to me, because some of those people don't think I should exist, that I do not deserve equal rights, or the support of my government in the form of health care or civil rights.  (For multiple reasons, thank you intersectionality!)

There is some real looking hard at yourselves and your choices that Americans are going to need to do, post-election.

I get that my internet experience is tailored to exist as much in the Social Justice Warrior Bubble as possible, both by choice and by chance, but the facts of this election, and this electorate, are startling to me. (To be fair, I think most of us were actually shocked by Trump's accession, if you can take the fact that both liberal and republican media sources were playing the whole thing off as kind of a joke in the beginning as any kind of clue.) And it's not as if, existing in those spaces online, or as myself in public, I am unaware that all the -isms are alive and well in my country. (The ones I personally experience, and the ones I have witnessed happening to others, which I do understand are not the same thing at all.  I'm just saying, I was also not unaware they existed, just because I did not personally experience them.)
But that someone could rise to power, so quickly and with so little opposition, well, that was a shock to me. That's were my own experiences were definitely not enough, because for however much I've been treated badly by people with ableist attitudes or behaviors, I did not understand the extent to which there were still huge swaths of the country who not only pity people with disabilities, but don't think their lives should be lived. I literally could not believe that a eugenicist was being taken seriously in our election (Granted, he did not come out and SAY he was a Eugenicist, but I think if you look at the definition, and you look at what he believes, you can see how many others and I were able to draw that conclusion.) 

That is an extreme I was not prepared for, in this (or any) election.

I have been listening to other people's lived experiences - the fact that there are violent racists in America is not a surprise to me, for example - but I know that I was not prepared for how ardently and publicly people proclaim things that are overtly racist (or sexist, or homophobic, or Islamophobic, or ableist,), and still don't think that they themselves are racist (et al) .  That they can support a bigot without believing themselves to be bigoted is ... a cognitive dissonance I did not expect, and can not comprehend.  I also have not found more than one or two Trump supporters who can actually give me a reasoned support statement for Trump that do not mention Clinton at all - I get being anti-candidate, because I'm pretty sure I'd vote Garden Hose over Trump, but if you cannot find something in your candidate to support, that's also a problem (Garden Hose: putting out emergency fires since forever. Also, helps your plants grow which is two whole positive things more than I can name about Trump, for example.)

Nor was I prepared for the ways in which this election, and who people support (and how they support them) would impact my personal feelings about people in my life.  It's like Melissa McEwan's Terrible Bargain come to life, this whole thing.

There are people in my life that I depend on, because I have to, whom I no longer can look at as trustworthy, because they didn't see the "big deal" about Trump saying he could sexually assault women and get away with it because he's rich.  There are men that I have befriended and trusted that I now have to seriously reconsider spending time with, because they assured me that it was, in fact, "locker room talk", and not aggressive misogyny.  I know of more than one married couple who are having some really devastatingly difficult conversations now, because they are seeing each other differently in light of their reactions to what has gone on during this cycle.  I've been unfriended myself, because I couldn't refrain from calling out bigotry where I saw it.

 And even though I'm most likely better off, it stung, because I thought I knew that person enough to say "Hey: Not cool. Repeating racist things makes you seem racist, I hope you know." (I am including the word 'seem' here even though I think the correct definition would be to exclude it: repeating racist things makes you racist, if you're supporting them. But I was A LOT more circumspect in my actual FB comment, so know that even this would have been seen as a killer blow to our 'friendship.' )

And I've tried to keep my personal Facebook feed as apolitical as possible (which is not to say apolitical, bc that's impossible for me), and had more than one truly frightening conversation with loved ones about race, class, the economy, misogyny (internalized and externalized), and power than I could ever have imagined having.  Sure, some have been positive, but for the most part, I find relationships are scarred by our interactions over this election - where I am mostly seen as a 'lefty loonie' in our family NORMALLY, now I have been placed in full on 'raving banshee' position, even though I have censored myself  8 times out of 10.

It's not something I'm likely to shrug off either - I will remember every "Oh, aren't you naive" and "that's not why I'm voting for him, but it's also not enough of a reason not to vote for him," I've encountered, you can be sure of that. 

In closing, please sweet baby jesus that I don't actually believe in, could this day end the way it needs to? With hope and community and optimism for our future? With the first woman president of our country, on the cusp of bringing a lot of people together to get shit done? Because I would like that a whole lot. 

On another note, though, my NaNoWriMo writing is going great guys, because I am writing about so many explosions! And history making changes! And life altering political policies! And complete dystopias, because I can't see how else this can end! (I predict M A N Y novels that come out of this NaNoWriMo are going to be Hunger Games-esque, because how could they not be?)

#Ableismexists, so we BADD again.

One of the more insidious things about ableism is that - unlike a lot of other prejudices - there's still an absurd amount of debate over whether it even exists or not.  For example: my spellcheck? Still underlining it.  A more widespread example would be a recent Twitter hashtag, #ableismexists, which wound up with a not-insignificant number of retweeters who were arguing that it actually did not - while this was in no way a surprise (but rather an unfortunately common response, in my experience), there was one new-to-me experience: At least one of the most prominent deniers was a woman with a disability herself.

The woman in question made a YouTube video where she - while using ableist terms like 'retarded' and 'idiots' - not only insulted the originator of the hashtag's lived experience, but talked about how loving and feeling pride & claiming as part of his identity his disabled body was 'sick'. Obviously, I do not agree with her, but I also felt like her post (which got retweeted a LOT by non-disabled folks, trying to disprove that ableism was a thing in a  "See: a disabled person doesn't think it's real, so how are we supposed to take it seriously"way) raised a pretty interesting point - specifically, the idea that if you don't experience something, how can you then feel qualified enough to say that it doesn't exist?

This woman's story is her story - for her, ableism and internalized ableism were not just foreign concepts, but things she found actively oppressing: More than once she said (or intimated) that the closest thing to actual ableism was what 'social justice assholes' were creating by believing in ableism, that accepting disabilities and disabled bodies was an injustice - an ableist trope I myself have had to overcome (more than once, and in more than one way) - that 'accepting' our disabilities was as good as 'giving up', allowing us to 'feel sorry for the poor little cripple', accept a role as victim for the rest of our life.

If that's her experience of ableism, I can see why she'd fight so adamantly against acknowledging it.  My experiences accepting the fact that there are systemic, social, financial, legal, informal, educational, medical, (and a million other forms of) injustices against disabled people has helped me to step out of feeling like a victim, and into feeling like a member of a larger community - not just of people with disabilities who are fighting these injustices, but of any community I have ever been a part of.

I never felt more like someone who belonged on my college campus until a group of girls in my dorm helped me realize that some of the policies the school had in place were creating a completely unfair burden on me - a wheelchair user who, because she could sometimes walk a few steps, was forced to use the stairs during a fire drill and wound up incapacitated for months.  When it happened, I didn't feel as if I had any recourse, or as if it was the school's job to change its policy: It was only the insistence of the women in my dorm, who saw the result of the policy, who made me recognize that the policy itself could be unfair, that the school could be operating under its own prejudices of 'if you can a walk a few steps, you can take the stairs', and that that was an inequality that needed to be addressed.  I didn't feel more like a victim because someone explained to me that the rules were unjust; I felt LESS like one, because now I had something I could fight to change.  My ability to use the stairs was not going to change (no matter how much I may have wanted it to), so the policy needed to.

Figuring out that doctors aren't always without prejudice (particularly when it comes to treating chronic pain patients), has empowered me to step away from more than one doctor who was actively doing me harm. Witnessing that some so-called 'advocacy groups' work against the group they're supposedly advocating for has made me a more conscientious advocate myself, has taught me to listen to the people who are being spoken for, to give them the space to speak for themselves, wherever possible. Recognizing ableism in larger society, and in my life, has allowed me to (among many other things) set more realistic goals for myself, commiserate with and fight for other oppressed groups, speak up on my own/other disabled people's behalves, step out of the mentality that - although my disability isn't something I would have chosen - it isn't something I can live well with.

For me, accepting my disability has been a long and complicated process - I still sometimes struggle with the realization that a lot of things are not going to happen for me, because of my health, and that that's ok.  I still sometimes struggle not to push myself too hard, because it always ends up with dire health consequences when I do. I still sometimes have an issue with feeling like I'm not doing enough to be considered helpful, that I have to miss out on too many 'normal' days with my friends and family for me to be worth them sticking around for. That I still have value even if I am contributing nothing financially. All of those issues (and so many more) are things that I accept are internalized ableism - thought processes that have decided my value as a human being is lessened by my chronic illnesses and disabilities. Accepting that the way I feel sometimes has more to do with a screwed up value system (capitalist societal norms of value being connected to financial contribution, for example) is 100% more empowering to me than thinking that I am worthless because of something I cannot control.

I'm not discounting that woman's life or experiences - if she feels like ableism is a detriment to her personally, and to disabled people on a larger scale, that's her right, and it's her right to say so when the issue is addressed (which is why I'm not linking to her video: I'm not trying to start hate anywhere). But I think to ignore and dismiss and discount the people the tag - and those of you who participate in BADD every year, and millions of more disabled people - is equally unfair. 

Just because it is not your experience, doesn't mean it's not valid. 

To read about some more perspectives on (Dis)Ableism, head on over to the Goldfish's abode: BADD 2016.  

This post may only be interesting to sociology/history/word nerds: I apologize in advance.

I somehow made it through our (granted unseasonably cool) summer months without putting in my air conditioner, and now that it's September, I want it with all of my soul.

Hi ho, internet friends ~ I don't know about you, but September has brought with it all that is muggy and unbearable up here in Massachusetts: We had some thunderstorms tonight that I was hoping would bring some relief, but no such luck. My asthma is so unsure of what to make of this, because some fall pollen is already out, so it's doing double duty battle, and there's some telltale rattling happening.

Calling the fall and the cooler weather, please, since I guess this doesn't even technically count as Indian Summer, as summer hasn't even officially ended yet. But September should be cooler than this.

So, I had this big check-in post planned, originally, with those first couple of paragraphs leading into some stuff that's going on here (besides the weather), when, in the course of typing out the words Indian Summer, it occurred to me that I have no idea how offensive a term that might be, and maybe I shouldn't be using it. And so, a whole new fascinating post (and at least three hours worth of rabbit-holing with Google) were born.

I had to start with the assumption that if it made it into the lexicon as something Indian, it probably didn't start out as a huge compliment, given both the word (Indian vs Native American) and the time period during which it would have emerged (which I was just guessing on, but I figured to be pre Industrial Revolution). Given those, I was not startled to find that there are many opposing viewpoints on its origin, its meaning, and its potential offensiveness.

After a (by no means exhaustive) search, it seems likely that it means "false summer", a kind of fake-out, reminiscent (to me) of Indian Giving, only this time, on behalf of Mother Nature. There are other explanations, sure - Fools summer, maybe; named after Indian Gods who sent the wind, perhaps; or (in a highly unlikely, but poetically, stunning turn of events) having to do with the actual Indian Ocean and its famed shipping, but most of the sources I found seemed to agree that there's a degree of dishonesty or falseness to it.  The majority of the other suggested definitions aren't particularly positive either - Indians burning things, or trickery of some sort - so they're not really helpful in terms of judging its offensiveness.

 Most interesting to me, however, was this blog post from the humorous news site, PTSOTL (whose author also writes for the Boston Globe and other major publications, and who did as good a job Googling as I did, since we came up with many similar sources {even if he is completely wrong about Tumblr, but that's another post}) which talks about what Indian Summer is referred to in other countries, and makes some pretty clear inferences as to its meaning:

Almanac.com has another guess for the meaning. 

The most probable origin of the term, in our view, goes back to the very early settlers in New England. Each year they would welcome the arrival of a cold wintry weather in late October when they could leave their stockades unarmed. But then came a time when it would suddenly turn warm again, and the Native Americans would decide to have one more go at the settlers. "Indian summer," the settlers called it.

 Sneaky bastards, right?  Surprisingly, the American term for the weather singularity may not actually be the most offensive one. Check out a list of all the different terms for the return of unseasonably warm weather from throughout the world in the Wiki entry here, including more info on my Russian friend from above.

In many Slavic-speaking countries, the season is called Old Ladies' Summer...

Only thing worse than a back-stabbing heathen Indian, of course, is a woman, right? Women are the Indians of regular people. 

In Bulgaria, the phenomenon is sometimes called "Gypsy Summer" and in some places "Gypsy Christmas"....

Gypsies are the Indians of Europe, right? Native American European Non-Europeans. Surprisingly, Germany and Austria, always known for their mannered approach toward cultural differences, may have the most reasonable expression:

In Germany and Austria, it is called "Altweibersommer", or if referring to mild sunny weather during October in particular, simply "Goldener Oktober" ("Golden October").

It gets worse though. 

In Hungary, it's "vénasszonyok nyara" (Old Ladies' Summer or Crone's Summer) because the many white spiders seen at this time of the year have been associated with the norns of Norse folklore or medieval witches.

Maybe, or maybe because you can't trust a spider anymore than you can an old lady.

Women, Gypsies, Old-Women, Spiders, Indians - So, it's basically "Outcast Summer"? "Persecuted Peoples (and assorted arachnids that help witches)" Summer? Yeah... I'm thinking perhaps that's not the most stigma-free term I've ever used.

And yet, I've never heard/read/found someone say they were offended by it, so I don't want to just assume it's offensive, but I also don't know many Native Americans people personally (and the one lady I could ask would probably just laugh hysterically in my face, and then roll her eyes at me, because that's the kind of relationship we have: I love her to pieces, but I'm pretty sure she thinks I am the Liberalest Liberal who Ever Liberalled, and, since she loves me back, she just pretends that's not true.).

I'm already anticipating the eye-rolls I will get if I mention any of this to members of my family, because I constantly get crap from them about being "too PC" and "going overboard". I honestly don't believe there is such a thing, but whatever - that's not what I'm trying to do here: It's more checking my terminology and adjusting for how people want to be spoken to/about. Nobody has every mentioned this to me, and I'm not reading some large scale (or even minor scale) treatises about it online, so... I'm not making a huge deal about it because it's not my place to.

It's just one of those phrases that's slipped into our vocabulary over time that I wanted to know more about. And now that I know more about it, I'm troubled. I'm left wondering if it wouldn't be nice if there were a different term we could use here, and if I saw a story tomorrow about how Native Americans found the term Indian Summer to be racists, I wouldn't be surprised.

At least now I know. At least now, if someone asks me to not use the term, I'd have a way to explain it to the eye-rolling people, even if that wouldn't be good enough for them and their "PC monitoring". It's enough for me to know. Maybe I'll start using the German word, that was pretty.

No, actually, Wikipedia has some better ideas: Latvia calls it re/summer ("atvasara") and China calls the period autumn tiger (qiū lǎohǔ (秋老虎), which ROCKS ---> either of these are obviously better vocabulary choices, popular lexicon. Get with the program and let's just start calling it ReSummer - a brief period of summer again after frost/cold -, alright ?

That way nobody gets hurt, no one's culture is ridiculed or appropriated, and it makes literal sense. Problem solved.

Also of scientific note -

• Some countries have very specific ReSummer criteria (such as dates and temperatures that must be met before it can be declared as such). I did not know this until I started writing this post, and I'm pretty sure the weather people on TV are also not aware of this, because I have heard them say it already, and even I know that it can't be Indian Summer until after the end of Meterological Summer, which is September 22. 
• According to The Phrase Finder,  "The incidence of Indian summers has increased significantly over the past decade or so (in the UK at least - I can't speak for other countries) as one symptom of the unstable weather caused by global warming."
• Apparently, haze is also required, according to Almanac.com: "As well as being warm, the atmosphere during Indian summer is hazy or smoky, there is no wind, the barometer is standing high, and the nights are clear and chilly." (Then today DEFINITELY doesn't count, because while we have haze, there is no chilly night happening here.)  

So that's what I learned today, and now I've shared it with you. More stuff you didn't know was racist until you put a little bit of thought into it and realized, "Of course, that seems likely!" This, by the way, describes basically my entire sophomore year of college, if you also include sexist/abelist/ageist/homophobic/etc. Liberal Arts educations are very eye opening, and also make you feel like you have not been paying attention to anything, ever, in your entire life (at least, for privileged people, that is).

 Now back to our regularly scheduled sweating.

Seriously, with the heat: Stop. 

In which the world thinks I hate animals (again)

Aside from one anonymous angry e-mail I got about the fact that I didn't like a certain drug, the only truly negative feedback I've ever received on this site was the time that I had the gall to suggest that the act of acquiring a pet was basically saying to me that I was unwelcome in your home*. The pro-pet contingent was up in arms over my suggestion that pet ownership precluded us (meaning me and whomever the pet owner might be) from having a certain kind of relationship; the "you can't tell me what to do in my own home" response was also quite vociferous; and the worst response - a well written, but sharply pointed "if your friendship comes with those sorts of conditions attached, I'm better off not knowing you" - was something that I had been completely unprepared for (especially considering I thought the person who had written it and I were, at the very least, friendly) and stung quite a bit.

    It was surprising to me then, and continues to confound me now, that the limitations placed on relationships by my illnesses are seen as unreasonable, extreme and beyond understanding, while the limitations that people voluntarily impose on relationships - say, you don't date smokers because you don't like kissing someone who tastes like tobacco, or you're not really friendly with people who go to bars all the time because you've outgrown your barhopping stage - are seen as completely normal, routine, and worthy of respect.

Let me break it down for you a little bit more - Take my example of pets. If you own a pet, it is an actual impediment to me being able to spend time in your physical space. I know that your cat's litter box doesn't smell to you, and that your dogs would never dare to shed, but for someone like me (who is allergic to all sorts of dander and fur, and hypersensitive to smells), your animals are indeed as much of a physical barrier in our relationship as the stairs going up to your apartment, or the perfume you can't seem to remember not to spritz before meeting me.  I have had to leave more than one family occasion because of a reaction to an animal (or the detritus that the animal has left behind, no matter how well you think you've vacuumed), and more than once, I have been either hospitalized or required additional medical attention (or a new drug regimen) for the same reason. [Trust me: there is nothing like a course of steroids to convince me to send my regrets next time.]

Hopefully, this clears up the idea that just locking the animal in another room while I am there means that everything will be fine.  That is far from the most likely outcome.  The most likely outcome is that my allergies or asthma will start up the minute I walk through your door - even though I've already taken prophylactic meds, just to be there - and that it will go downhill - to varying degrees - from there.

I am not saying that you can not HAVE pets: Although I have somewhat of a reputation now as an anti-animal person - I do not, in fact, dislike them.  I think puppies are adorable and little kitten feet are so scrumptious and padded and purrfect that I can't even.  The truth is that I have had to harden my heart to these snuggly little guys out of necessity: so that it just isn't one more thing that I can't have. Trust me, though -> I binge watch cute animal shows, and am definitely not immune to the allure of a waggely tail.

BUT, let's just be clear about the facts here - your pet-friendly house is significantly less (and sometimes completely un-) NTE-friendly. Those are just the truths of the matter, and me saying so doesn't make me some sort of barbarian animal hater: it just means that I'm pointing out the limitations that your choices are creating in our relationship.

It means that I don't get to drop everything and sack out on SisterCh's couch for a week to help after Baby D is born, because an hour in her four room, four cat apartment, and my skin is raw and red and raised, and my nebulizer ain't cutting it anymore.  That is not to say that sometimes I don't bite the bullet and choose the nebulizer and the hives and the steroids and the ER, because I value the people I love and want to spend time with them - the same way I hoard spoons until I have enough to visit my 3-steps-up sister or UJ and his 'your wheelchair won't fit through the entryway' house - these are just the kinds of sacrifices spoonies like me make all the time.

Pointing them out does not make me the Wicked Witch of Whereever Petless People Live.   It literally is just me asking for the acknowledgement that maybe your having animals or steps or a husband who bathes in Axe body spray are all things that I have to accommodate: And that sometimes? I am just not capable of doing so.

It would be a nice change of pace if everything stopped being my fault. 

If people could recognize that that I might love to just be able to drop in for a few minutes and a cup of tea, but with those steps, it'd cost me a week's worth of energy, and I can't do that right now.  If someone would acknowledge that part of living with a brood of cats, dogs - or even toddlers who bring home every germ from day care - is that sometimes your friend/sister/cousin with the wackjob immune system can't come to birthday parties, or girls' nights, or potlucks.

Something I often feel that gets overlooked is that part of the ease of a relationship - the familiarity and flexibility and fluidity of it - is hampered not JUST by my illnesses (which are not choices, btw) but also by your life decisions - having animals, living in a 3rd floor walk-up, only having late night parties, etc.  It's not that there is anything wrong about any of those choices, but let's just stop making this all MY issue, all MY fault -

YOU have made decision that work out great for you 98% of the time: Happy puppy smiles! so many great neighbors! Living in the suburbs! Drinking till the bars close!-  but I happen to fit into the 2% that's leftover and kind of sucks.  The inconveniences and unfair factors related to your choices - like having to lug your groceries/stroller up those three flights of stairs, or having to walk your dog during a blizzard , or having to wake up the morning after you've closed down the bars- the stuff about your choices that hinders rather than helps. All the stuff that is just part of the deal, and goes along with the decisions you've made.

And me not being able to hang with you or babysit your kids fits into that 2%. It's not about fault - because I'm not trying to BLAME anybody for having animals or stairs or whatever - but it is about getting the fact that I am NOT at fault, if you can see the difference. 

It's all in the perspective, and if I can just get people to see that I'm not saying you have to make different choices, or you have to only do things in a way that means I can participate (Because, truth? That is boring. I can participate in very few things, and would not like everybody to have to scale back to my level), but I am saying that you need to realize that your choices have consequences for our relationship, and that sometimes they will really suck.

It's seeing things more from a "well, I've got cats, so you can't come here, it seems reasonable to me that I should go there instead" kind of perspective instead of "well, I've got cats, so I guess you don't want to ever come here, the end."  It's about having a relationship with others where it's not all about me asking for things that people see as accommodations and impositions, and more about acknowledging and framing it as "hey this is OUR issue; how do we go about getting around it?"

Unfortunately, too often, the procedure in my life has normally been

• Barrier = Can't Do/Go = People Eventually Stop Asking Me To Do Things or 
• Barrier = Go Anyways = Get Much Sicker = That Was Really Unwise instead of 
• Barrier = Can't Do/Go = People Help Me Figure Out A New Plan. 

Because sitting out on things is really starting to chafe, and having people assume that just asking me - knowing I can't go because of X or Y - is good enough is really getting old.

 No: it's not good enough. If you're really interested in maintaining a relationship with me, asking me to do things you know I can't do (like drive or show up at your inaccessible apartment) and saying "Sorry you can't make it!" is no longer good enough for me.

Let's figure out how to do better.

*I tried to find that post, but haven't managed it yet. If I do, I'll update with the link.

My Letter to the FDA

It's taken me a while to figure out what, exactly I wanted to say in my comment to you about Chronic Fatigue Syndrome & Myalgic Encephalomyelitis: in the 18 years I've been dealing with this illness, I've written many letters, blog posts, and rants; had a million discussions; banged my head against a thousand bureaucratic walls; spoken to my congressmen & my doctors, my family, other people's families, and a generally disbelieving public about this disease with it’s stupid name that changes your life forever.  I don't know if I've ever said the RIGHT words, if I've ever come up with the PERFECT explanation, but I do know this - I don't stop trying, because I don't have a choice. 

So that's what I'll say to you, government workers who are supposed to be helping all of us out here who are suffering from this heartbreaking, misnomer-ed & misunderstood disease: don't stop trying, because you shouldn't have the choice, either.  Chronic Fatigue Syndrome is a serious, debilitating, complex jumble of an illness - nobody understands that better than us patients.  It must be truly frustrating to the medical professionals who are tasked with developing the protocols, the drugs, the treatments, the diagnostic tools, the help we so desperately require, to be faced with an illness as complicated and difficult to nail down as CFS. I can only encourage you to think what it is like to live with such a disease, and hope that that spurs you to work harder, more diligently, more intensely. 

This is a disease that a lot of people still don't believe in: I don't have the luxury of not believing in it - I'd love to be able to dismiss my symptoms with a fairy tale-like ending simply by stating "but I don't believe in you..." But then I’d try to stand up and pass out again, so my fairy tale bubble would pop.  People don't believe in it because there's nothing to X-ray or blood test for (as of yet) and so doctors don't take it seriously.  Doctors don't have to take it seriously because our government doesn't take us seriously, doesn't devote the necessary time, energy, and resources into finding out what the hell is happening to us, how we stop it, treat it, improve it.  No, this is a disease where you get a diagnosis, and are quickly shown the door, left to figure things out on your own.

That's not the way it should be, and you're the people who can change that.  Please: take this seriously.  Please: know that there are patients out here DYING from this, living with this, suffering through their every day with this, and that We Need Your Help.  Please: do your job, and help us. Don't let this be yet another example of how you've left us to fend for ourselves.

Sincerely, etc.

------

I meant to post this earlier in the week, but spoons ran out, and so I didn't write it till today.  You still have till midnight on Monday, April 8th to comment to the FDA about CFS/ME.  There's a great post by Erica here at CFS Treatment Blog on how to do it, and why it's so important. 

Happy Arbitrary Day

Welcome to the Blog Carnival #83, for June 2012.

Our own Blog Carnival Leader Extraordinaire, Penney, starts us off with a post about the little known (at least to me) Infante Philip, the heir to the throne whose disabilities led to him being passed over as King of Spain & Naples.  (Particularly striking to me was the line from his Wikipedia page that he had been "excluded from the succession to the thrones of Spain and Naples due to his imbecility.", which led me down the wormhole of imbecility -> Mental Retardation -> Euphemism Treadmill -> a discussion re: the evolution of people first language regarding disability.) 

The Girl with the Cane gives her take on Disability & Religion, a topic that Ruth Madison also addresses some in her post We Are All Disabled.  Ruth's post also makes some great points about disability being seen as 'lesser', and the inherent hierarchies even within the disability community.

Casey's post Cartesian Dualism & Chronic Pain not only gave me a fancy label for how I sometimes have to manage my pain (Cartesian - relating to Descartes, and discussing the mind-body connection/problem), but had a great first person account of how transcending one's pain can be both a positive and a negative for those of us with chronic pain.  

In the political spectrum, I found this post by the Queen of Spain to be quite to the point (and hope that the Supreme Court sees the points this week as well).

 
Robert Rudney  is the author of a new book, Lovers Lame, which portrays the romance between two main characters with disabilities, and seems really interesting. (You know I'm always on the lookout for new books: Hero & Heroine both have disabilities and the story talks about the differences between their situations and doesn't just glom them together because they happen to both have physical limitations?  Immediate add to the TBR pile.)  I also found his discussion about the book in the comments for this carnival to be quite interesting: 

How many movies or TV shows present people with disabilities in romantic or sexual situations? Not many…

One reason for writing Lovers Lame was to explode this misconception. The loving relationship between Christy and Jonathan, two individuals in wheelchairs, transcends their disabilities, societal norms, a serious accident, and pig-headed parents. With a little help from a sympathetic personal assistant, they achieve sexual fulfillment. They are the lucky ones, but they are fictional.

Stacie's post, Masquerading, particularly hit home for me this month.  She talks about how she felt she's pretending, passing as normal, when she spent time with her younger child while her older child with disabilities was in school.  Because so much of her brain was still focused on the needs of that child, it often felt like 'pretense' or 'deception'.  One of the reasons posting has been so light here this month is because I've mostly moved in with my grandmother and uncle, having realized just how desperate my grandmother's health situation is.  I've got another (very long, complicated) post about this going up this week, but what I will say now is that whenever I'm away from the house - gone home to shower or to take my Tuesday with the kids - 85% or more of my brain is thinking about the situation here and what might be occurring in my absence, what I may have to put back together when I return.  So that feeling of deception - keeping the happy face going for the kids, especially - is one I'm becoming quite familiar with. 

Sharon makes some excellent points about the challenges of writing with disabilities (lots of them echo my own experiences, for sure):   

However, the biggest toll that my disabilities take on my blogging is in volume, frequency, and organization. I tend to write really long posts, and that’s often because I can’t keep track of what I’ve already said. I often make the same point repeatedly because I’ve forgotten that I’ve already made it. I start posts, run out of spoons, plan to finish them another time, and then never do — because I’m too sick. Because I’ve forgotten the point of what I wanted to say. Because I’ve written another post on a similar theme, forgetting that I already had something written on that topic. Because the content is no longer topical. I have approximately a hundred partial posts in my drafts bin here. Of course, my readers don’t see all these failed efforts because I don’t post them!

 Allison over at Gilbert & Me, (who was so patient when stupid Blogger kept marking her comment as spam),  has submitted an older post that is poetic and honest and beautiful, called What Does Seeing Feel Like In it, she discusses all the things she thinks she'd like to see, if given the opportunity.  She discusses so many aspects of sight and blindness that I, because vision is not an issue for me, had not considered before, and although it's kind of long, I urge you to read the whole thing if you can. I think the part I liked best about it is that she expresses a natural curiosity about how things might be different and does it in a way that shows all those tropes about how people with disabilities feel sorry for themselves are just a bunch of BS.  Case in point:

In the same way that my parents get carried away discussing how they would use their lottery winnings first to pay off all the bills, and then live out the rest of their days quietly in a modest house, in a community where no one knew them to avoid being scammed or robbed, I think about how I would react if suddenly, I could see.  ... But until then, I can accept staring longingly over a figurative fence in awe and wonder at the sighted world while sighted people stare back in amazement of me as the way my life was meant to be.

In a similar vein, there's this post by Wheelie Catholic, Do I Think About Walking, which I found in my Internet wanderings.

 And to bring this edition of the Disability Blog Carnival to a close, we have this positive perspective contributed by  Meriah, who's hosting her own Summer Disability Blog Hop each Wednesday, in her post  What the Cultural Value of Disability and Star Trek Have in Common:

We don't look at the contribution of disability in and of itself, you see. We are not looking at disability and seeing it as an opportunity for growth, change, forward movement and advancement of our human race as a whole: we are looking at it like it's a problem. Something to be fixed. Broken bits of human flesh that need mending. We are trying to shove people that are especially unique into a mold that just does not fit, rather than looking at the mold and wondering how we can get rid of it, the mold.

 That's it for June's edition of the Disability Blog Carnival, this Arbitrary Day: Hope you all are as well as possible, and that you'll keep your eyes open for next month's Carnival, wherever it might be.

That's ok: I don't need to shower

So I just had my reevaluation for my participation in our state's Personal Care Assistant program - the program I use to pay my mom for doing things like buying groceries and helping me shower.  I've been in the program for about 6 years or so, and every time the people come out - and it's never the same people - they tell me something different. At my initial intake (done 3 agencies ago), the nurse and the case manager came together, sat with me and basically explained how I didn't qualify for 3/4 of the stuff I really need help with - like cooking and cleaning and whatnot - because I live at home, and "the other people you live with are expected to pick up those tasks."   That was news to both them and me, I assure you.  And considering that one of the stated goals of the program is to "help clients live as independent a life as possible", kind of contrary to what we were supposed to be accomplishing.  But they were right - six years later, I still am not technically approved for the majority of what my actual needs are: someone to dust when I'm not around (bc of the asthma); somebody to bring groceries into the house and maybe get them made into a meal once in a while; all the toting and lugging of me and my chair to various non-medical appointments, etc. 

We filled out the paper work, with our best case scenarios, and nobody was surprised when the decision came back from Mass Health approved for significantly less hours than were necessary.  Significantly less hours than a qualified nurse and my own doctor considered necessary, I might add.  But I took what I could get, because, especially at that point, any financial help was better than the nothing I was getting. The kicker, in regards to my hours, is that I was approved for 30 minutes of "medical related" travel time A WEEK. 

30 minutes of medical related travel time happens at least 3 times a week, and that doesn't even include the actual appointments.


At another evaluation, the nurse told me that I qualified for an additional stipend, because of a new part of the program, and that she would put in the paperwork for me.  She didn't, and by the time I found out that she hadn't, the state had suspended that program, and I could no longer apply.  Last year, the nurse told me I was approved for two years, and wouldn't need a new evaluation until 2013.  I've had two people come out since then, both for evaluations. 

Today's nurse went out of her way to tell me that Mass Health is dramatically cutting back on hours, to the point where she's had to tell clients that their hours were cut back because "risk of falls is anticipatory language, and Mass Health doesn't pay for what we might anticipate our problems to be, but what they actually are."  Gee, there's great budget reducing deduction, state agency --> cut preemptive funds to protect people from falling, client falls and is badly injured, now needs MORE services then ever (so you spend even more money than you would have originally)!  Ignoring the fact that the client is a real person, who will have additional pain and suffering because of the fall (and I'm only ignoring it because I know they are), what kind of logistical financial sense does that equation make??  True facts: I hated math in school, but I still managed to pass, so I know that it makes zero actual sense! 

Anyways, she gave me the spiel about cutbacks and then said "So I hope I don't have to make any changes in your eval, because the only clients that I've had them deny are ones that I've asked for adjustments on.  So I try not to rock the boat."  She said that before we had started going over what help I need and when I need it, she said it at the bottom of every page, and she said it again as I was signing my (blank) form, so what are the chances that I told her that I felt like I needed more hours?  Even though I really do need more hours, and need adjustments on the aspects of daily living portion that are still wrong from five years ago?

I don't think you even have had to pass math to guess, but the chances of that are also zero!

There's so much talk in the air lately about benefit scroungers & welfare layabouts - people who are scamming the system and cheating 'the tax payers' out of their hard earned money.  There's a lot of talk about cutbacks to essential social services and financial supportive programs.  You can't read any sort of reliable news source that isn't telling you about how the social safety net is being dismantled in Country A or Country B.

And if you read through any of the blogs from last week's brilliant Blogging Against Disabilism Day, then you probably saw how much these cutbacks are affecting the lives of very real people.  Here's just one more subtle example: I wasn't denied any services by the program I'm in, or by Mass Health, or even by the agency that administers my participation in the program.  But I was told, again and again, that to ask for the amount of help I truly need could leave me without the help I already have.  That to ask for more is to put it all at risk, and that was enough.  And it wasn't the nurse's fault - she was honestly trying to be helpful, because she knew I needed services and didn't want to see me without anything.  But when the climate is "our state is cutting money where ever it can find it, and if that means a person with disabilities falls (or goes without meals or showers) because of it, oh well: unintended byproduct of cost-cutting Necessary Measures!", then people with disabilities know that they have to be extra cautious, to settle for what they have, even when it's not good enough.

But no, those commenters who were sure that there "isn't STILL discrimination against the disabled": I'm sure you're right.  I'm just being overly sensitive. 

   

My Years of Magical Thinking...

And why I'm calling BS.


There's this idea out there - in the everyday world, in pop culture, in families the world over and sadly still in some medical circles - that you can believe yourself into being well (or that you somehow believed yourself into being sick in the first place).  That all that it takes is wanting to be better badly enough, purely enough, consciously enough, something enough for it to somehow "manifest" in your life.

The idea takes numerous forms - there's the curative power of prayer; the school of 'get up off your ass & do something about it, you whiners' (aka the bootstrappers); the 'but you've got nothing to be sad about/tired from/allergic to' zealots; a million symptom-specific diets; holy water & snake oil & pills made from coral only found in the shadow of the wreck of the Lusitania; and the ever adorable 'Oh we all get headaches/sad/tired sometimes, but you don't see me sitting around complaining about it' crowd.  Those are just a few off the top of my head - there's probably a thousand more we could come up with together (Feel free to leave your gravest offenders in the comments!) but they all have one thing in common - they take a person's illness or disability and make it not a medical condition, or a failure of society to accommodate the needs of that person - but a personal failing on the part of the individual.  They all nullify our personal (individual & cumulative) issues and needs and turn them into something we're doing wrong or not well enough.  And I say bullshit. 

This sort of blame, grounded in magical thinking, shows itself in everything from the rantings of politicians about benefit scroungers, to the old woman in the parking lot who yells at me for being too young to need a handicapped parking spot, to my super-crunchy sister explaining to me that all illness is rooted in "past personal traumas" and "touch therapy" might be the answer for me.  It shows in personal stories of achievement - converts of former patients who swear by whatever method happened to work for them, and preach about it now as if it were the One True Word.  I'm happy for them, truly, but can't get over the amount of gall it would take to assume that what worked for you and your illness must, of course, then work for me (or the millions of others of us who share a disease).  Just because you started running marathons on a diet consisting solely of cough medicine and peach pits, does not mean it would work as well (or at all) for me.  Thanks for telling me about it, now carry on with your business. 

But it's never that simple - the fact that there is a peach pit & cough medicine cure out there, and I am not attempting it: that's unacceptable in society's eyes.  I should be doing everything I can to fight against my illnesses, even if it's contrary to common sense, defies the constraints of financial, emotional or physical realities, &/or is the least likely antidote to whatever ails me & in fact, would make my problem a million times worse.  Society gets to pick if I'm trying hard enough, and {Spoiler Alert} I never will be!!

-----

I was 15 when I first got sick, nowhere near done figuring out what kind of person I wanted to be when I grew up, and everything I thought I  knew about my world & who I was just... ended.  I wasn't smart anymore, because I would sleep through my classes, and the time I should be doing homework, and miss weeks of school at a time. I wasn't a dancer anymore: after months and months of missing them, on days I could drag myself there, I would go to the one dance class I thought I could manage, do a half-ass job and then curl up in the corner on the gymnastics mats to go to sleep.  I'd gone from teaching three days a week & taking my own classes to barely limping through the basic warm-up at the barre.  

But no one told me to stop: My doctors said I was very sick, but that I "shouldn't give in", that I should "Do what (I) can." To a fifteen-year-old (well, to fifteen-year-old me, anyways) that was like a challenge - "go until you can't go anymore."  And that's exactly what I did: I worked so hard at school (even when I was homeschooling) that when summer came around, I was bedridden.  I still can't watch the show tape from that last year, when I lost out on my first solo and instead hobbled through the one number in the recital I had to nearly kill myself dancing through.  Afterwards, laying in the wings, waiting for my heartbeat to slow and my vision to come back (looking back it's likely my POTS/NMH issues were a problem even then), I thought to myself: "Well, was that worth dying for?" 

But I didn't stop pushing, because everybody told me I shouldn't.  My family constantly told me that I just had to keep trying, my teachers said that "surely, someone as smart as you can figure out how to beat this," my friends nagged that I'd been sick long enough, already, hadn't I?  I know that they were trying to be encouraging, but it was the only message I heard, that I had to battle, until I won. That it would be like giving up, to say that I might have to live with this illness instead of fighting against it. The doctors made sure I knew that if I started to "act like I was sick" I would only get worse: "Don't give in," they would tell me, "keep fighting."  So I did.  For (as it turned out, way too many) years.

My parents, armed with the same doctor's advice - "don't let her give into it, because then she could be sick forever"- were as ill-equipped to deal with our new situation as I was.  Never mind that I was sick right then and that might have been important to deal with.  Nope, the now was always about the fight,  and so we spent a good portion of what was left of my teenage years fighting against the CFS, and often against each other, when it seemed to them that I was "giving in" to it:  When it got to the point that I couldn't eat, and I lost about 35 pounds like it was water weight, I can remember having screaming matches with my dad at the table where he would say such helpful things as "JUST PUT IT IN YOUR MOUTH AND EAT IT FOR CHRIST'S SAKE!!!" and I just... couldn't.  It tasted like ash - everything did - and burned all the way down, where it would sit, heavy as winter boots until my belly revolted and back up it came. I would cry and he would yell that I was making myself sicker, with the crying.   Or being in the car on the receiving end of glares from my siblings, when they all wanted to go someplace and I was too exhausted to move, let alone get out of the car again, and my sister closing the door, rolling her eyes and saying "Well, I guess, if you're going to be that "sick", we'll all just stop having fun now" as we drove home.

We didn't know, is my point: Nobody gave me - or them - the skills. Maybe, with something like an aggressive cancer, the doctors would've been right on target - 'fight back, till its gone: take no prisoners, grant no quarter!'  But I had something nobody knew what to with, a chronic illness with no known treatment, cause, cure. And so their advice was way off the mark. It was like I was diagnosed with CFS (and later Fibro & POTS & now the diabetes, not to mention the 14 other things in between and the one big question mark they're all still looking for as the Holy Grail) and instead of a treatment plan, with meds to take and dos and don'ts to follow, all they told me is "You have it, but pretend you don't, as much as is possible."  And that was some damn bad advice.

It was wrong and dangerous, and it could've been - on more than one occasion for me- deadly.  (Turns out ignoring pneumonia is potentially a bad thing: who knew?)

That's why this fallacy of magical thinking gets me so upset - because it took a fifteen-year-old girl who could have learned the skills she needed to manage a chronic illness and continue to live a full (if different) life, and left her helpless, terrified and vulnerable. And blaming herself.  

-----

So, I didn't have the skills, or the treatment plan, or the answers, but everybody kept telling me that they were out there: keep trying till you find The Cure. So I tried all the crazy shit that you think you are not desperate enough to go near: pills with high price tags and exorbitant claims; cleansings and energy work and fasting rituals; diets and doing an hour of PT every Friday that takes you until Thursday to recover from; pushing yourself way beyond what your body is actually capable of.  The doctors might roll their eyes at my latest endeavor, or be all for it -"couldn't hurt" I had more than one of them tell me, even though they were 100% wrong-  but they didn't have anything better to offer, so it was up to me to follow the magical thinking train as far as it would take me.

It goes pretty far, you know: you work so hard at convincing yourself that you're getting better, while your hospitalization rate soars and your immune system falters.  You can laugh with the doctors about that "last bit of voodoo you tried" all the while you're planning how you'll scrape up the money for your next.  You can fuel that train with all of the self-hatred you accumulate when people tell you that you're just being lazy, or that you're faking, or that if you really, really tried, you could do it.  (That's a never ending, renewable resource right there: look, I fixed the economy!)

But in the end, it didn't matter how often I thought maybe this pill was helping or that I just had to make it through the next 14 sessions and the acupuncture would clear everything up.  In the end, I was sicker than when I started, discouraged at myself for failing and certain that if I just tried hard enough, like everybody said, I could beat this thing.  

---

There's a lot of maybes about my illnesses - maybe if I'd never gotten the mono, it wouldn't have switched on whatever self destruct sequence is probably hiding in my genetic code, or maybe if I'd gone to see a specialist right away s/he would've recognized the problem before it spiraled into today's current chaos. Maybe X or maybe Y. I don't know about any of that.

But there's one certainty about the whole mess: It could've been better.  My experience did not have to be as hellish as it often was.  It didn't have to be as isolating, and full of blame as it was: Because everybody - from my teachers to my sisters to my grandmother who couldn't understand why I'd cry when she suggested I go to a faith healer - blamed me at some point.  I'm not saying it would've been a land of rainbows and puppies - hell I don't buy into magical thinking now, and my life is certainly pretty puppy-less - but it could've been better than what it was.

And that's where society and medicine and the world with all of it's "The power of the Secret of thinking with your wholeheart and wanting it with your entire being" bullshit failed 15-year-old me, and 32-year-old me, and the 3-year-old with learning disabilities that I used to tutor, and my sister who has depression, and basically every disability activist I've ever met; and every person with a disability, and their families and my parents, and, well, the whole world, honestly.  It isn't enough to wish it away - that wishes us away, too.  It doesn't honor who we are to be told that we're just not doing enough to be well, or that we worried ourselves into being sick, or that if I looked on the bright side more often, I would somehow no longer be allergic to all of the contents of the natural world.  It's bullshit is what it is, and I'm going to call you on it, now that I know it for lies.

----

It wasn't until I got to college and started meeting other people with disabilities and allies and advocates and started paying attention to the people who said: "Listen, it might get better: You never know, you might wake up tomorrow and be healed and awesome.  But there are ways to make today easier to live through, to be awesome with a chronic illness, and one of them is NOT FIGHTING quite so much.  It's accepting that you're sick.  You're a sick person, a disabled person, and ... you know what?  That's fine, too.  You're not lesser, or weaker, or anything negative because you're sick.  You're just sick.  It's a part of who you are, and you need to deal with it, because this fighting with it is just making everything worse." 

I cringe to remember my Freshman self, saying to a professor that I was "Not disabled: just temporarily out of service."   She was polite enough not to say anything, but I want to go back and punch myself in the face for that flippant nonsense: I really thought that not claiming part of myself would be beneficial?  For who?  Was it supposed to be funny? It seems absurd and sad now - I don't even know. I do know that when I finally made myself face the fact that all of this magical thinking was getting me nowhere, was in fact hurting more than it was helping, it was devastating to me: Not being able to cure myself, I must instead of course be a complete failure.  (It was this all or nothing attitude that really helped my depression stay around as long as it did, unfortunately.) There was no middle ground for me, and realizing that people were wrong and I wasn't going to be able to think myself better?  That all the pushing my body through shit was actually making things worse?  It was like stepping out into empty air yet again - I had no idea what could be next for me, if everything I knew how to do - if fighting & believing that it could all just magically go away one day - was wrong.

But once I got past that, once I accepted that truth, I learned so many ways to make my life better, to make it more meaningful, to work towards not just marking time until I got better, but living through that time, because this is my life now.  It's a life with chronic illness, and yeah, I'd rather it wasn't, but wishing doesn't make it so, so get to living & dealing with it, because it's a part of my life, but it's not all that I am.


And that's a truth I worked long and hard to find - and it still takes some work to remember that it applies to me - that there's societal constructs at work behind my feeling of just not doing enough to fix myself, and that I'm not really a lazy, layabout who'd rather play on the Internet all day then get a real job. That 16 doctors appointments in the space of three weeks is more than enough, even if they're not giving me the answers I need.  That eating french toast today instead of a salad like every other day, and is not the reason I'll obviously never get better.  To remember that there are reasonable levels of self-care and coping strategies, and then there's just plain false hope.    

And the idea that I might have gotten to that point so much sooner if somebody had been around to say to me "Magical thinking isn't going to cut it. There may a cure out there, but it's probably not going to be found in this guy's car trunk." (True story) "And as far as I can tell, there's nobody around to provide you with a deus ex machina, so get to living with this instead of waiting for it to get gone."  

But that's why I talk about magical cures when they pop up in what I'm reading or watching.  It's why I get into arguments with the people in my life who dole out advice on seaweed pills along with our shared breakfast. And it's why I'll keep talking about it here. Because somewhere there's a fifteen-year-old girl, with an illness she did nothing to cause and she can do nothing to get rid of.  And she deserves to hear the truth. Not the fluffy, Secret-based philosophy of pseudo-cures and self-blame.  But the facts: That chronic illness & disability are just another part of life, and you can deal with them, and treat them, and live with them, and even thrive with them - to the best of your ability - but you can't, not ever, think your way out of them.


 *Welcome to all the Blogging Against Disability Day readers - I know there's a million great posts to be read, so I really appreciate it if you made it all the way through that!  If you're one of my regular readers, please head over to the Goldfish's place, and read some of the other excellent BADD posts: I promise, you'll learn a lot.*

Dear Entertainment Weekly,

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,

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: 

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.

 

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).
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!

 while the girls choices are certainly more stereotypically 'girly':

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).
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!

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.

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