I’ve noticed that you’ve been getting a lot of flak. A lot of hate. People use you as a punchline. Like, “I had a cold.. but WebMD told me I had cancer!” That must be hard. So I’m writing to let you know that I’m still here, as a friend. I’m a loyal, true believer. Yes, there have been times when I just had a nosebleed and you told me it was either a brain tumor or like, I don’t know, Ebola, but one time, when it really counted, you were my ally.
You probably don’t even know what I’m talking about, so I’ll tell you. Once, when I was 18 and home on winter break after my first semester of college, I had just gotten over what my local doctor told me was a bad virus when my feet went numb. And then they stayed numb. It was very odd. I did a lot of things to try to get them to un-numb themselves, but nothing worked. I put on warm socks and ran up and down the stairs. I rubbed them a bunch. I took hot showers. And then, WebMD, I turned to you. I plugged all the things I was feeling into your lovely symptoms checker and you spit back at me “Multiple Sclerosis.”
Multiple Sclerosis was something I knew nothing about. I didn’t know anyone who had it. I knew that sometimes people did charity runs or bike rides for it because it was A Very Tragic Disease that, I don’t know, probably Only Very Sick and Old People had and probably led to them being Confined to Wheelchairs. Thus, I yelled to my dad, “Dad, could I have multiple sclerosis?”
And he, as every father probably should when a teenage daughter says “Dad, could I have [insert tragic disease here]?,” said “No, what? No.” Thus I attempted to put it out of my mind. But, as the existence of this blog might have led you to guess, you were right, WebMD. You were right! You are probably wrong a lot of the time, but with me, you were right. And I argued with a few doctors and convinced them that something was really wrong and that I knew my body and knew that it didn’t feel right and that I really really did need an MRI. Finally, though they thought I was crazy, they gave me one and then they scratched their heads because you guessed it, there were lesions, and without your symptoms checker, I might not have gone to the doctor.
Which is really my point, other people who might be reading this letter (oh, is this on my blog? How interesting.). My point is that you know your body better than any doctor might and even though WebMD is often wrong and you don’t have a new kind of cancer every time you have a headache, sometimes they’re right, and if it’s WebMD who convinces you to go to a doctor and makes you feel legitimate enough to say, hey, listen, I want you to run that test, then so be it.
A thing, though, which is strange, is that I went back, for old time’s sake, let’s say, and I put in all those symptoms that I had, because, I don’t know, masochism, and MS didn’t come up. The top results were much less serious conditions, even though I put in all the symptoms I had which were accurate and pointed to an accurate diagnosis. I had to scroll down a very long list to find MS. WebMD, are you feeling pressured? Are you trying to change your reputation as an over-reactor, the website that says cancer when it’s just a nosebleed? Don’t tell someone like me “Poorly fitting shoes” (an actual result just now) when they have MS. You know that doesn’t explain the nausea, the dizziness, the vertigo, the vomiting.* WebMD, be yourself. Just tell us your truth, we can take it! Be a tool of empowerment, even if people don’t see you that way. Some doctors suck and barely listen, but you take every symptom into account and give every possible answer. Keep doing that.
a Hopeful Fan
*seriously, I have worn some poorly fitting shoes in my life, and they have never caused… MS-like symptoms.
I’m going to start by saying I’m on board with most of this video! Most of this video is so great. Hooray for pointing out misogyny and hooray for doing it in a 3 minute and 40 second youtube video that’s pretty watchable! Great. What I’m not down with is this: slut-shaming. Yes, this is a blog mostly about disability, and we’ll get there. Gimme a sec.
The first images/video clips that the video I posted uses to show media failings/instances of misogyny are some that show nude or semi-nude female bodies. And while I think that a naked female body should really never be exploited to sell a burger (potentially because I’m a vegetarian), I think that not all of the clips that they showed are necessarily examples of exploitation. A Rihanna music video? She’s an (extremely successful) female artist with creative control over her own worldwide brand, and if she wants that brand to include her own nudity, I don’t think that’s a) an example of the media failing women or b) something that she should be shamed for.
Yeah, I know, Sinead O’Connor doesn’t agree with me, but Sinead O’Connor has a lot of fucked up ideas about the female body. “Your body is for you and your boyfriend” is frighteningly heteronormative and also limiting. Your body, ideally, is for whatever you want it to be for. And I really do not understand how young women are supposed to process the two messages that we get the most often regarding our nude or semi-nude bodies, which are 1) “nudity or semi-nudity = objectification, which you should avoid at all costs or else… #ominous” and 2) “love your body, feel no shame, show it off! How to get a bikini body? Put a bikini…. on a body! LOL.”
We really can’t continue to live with both of those messages. Women can’t be shamed for showing their own bodies, whether it’s on the beach in the summer, on facebook (hey, you take pictures at the beach, right? Pictures. They go on facebook), or if you’re Rihanna in a music video. We cannot protest the Taliban’s mandatory veil policy and then turn around and tell our friends to wear longer skirts. Whether it’s hair or ankles or midriffs or breasts we’re telling women to cover up, we’re limiting female bodies, and that’s unacceptable. That creates shame.
And for young women with disabilities (see, I told you we were getting there) it’s especially important to know that nudity is nothing to be ashamed of, and that the body is nothing to be ashamed of. If your body isn’t functioning in the way you expect or want it to or are told it should be (by society! Shut up, society!), that’s yet another source of shame. The more we are told that nudity is something that we can see in society, the more types of bodies we will see in the media and the less women (abled or disabled, of all body types) will feel a need to hide. Or, anyway, that’s my hope. Keeping public nudity as a weird, semi-taboo thing that only “hot people” are allowed to do (and then get shamed for doing) is not how to promote healthy body image for women. So, while I love most of the video at the beginning of this post, the body-shaming I could do without. Let ladies be naked, yo.
I was just reading Liz Dwyer’s response to the whole Elan Gale Thanksgiving flight feud thing (this guy named Elan Gale had a fight with a woman named Diane on a delayed flight on Thanksgiving because he felt like she was being a dick etc etc) and feeling like when we talk about “privilege,” we’re really talking about one thing. We’re talking about race. Which is great, it’s a conversation that needs to be had, over and over until things in this country are less terrible (etc etc, this is clearly not my field), but there are other kinds of privilege.
Liz Dwyer, in her response to this flight feud thing (if you didn’t click the link, lazy people, kidding) says that people wouldn’t have found the whole thing funny if Gale was black, and that the incident gets to be funny because they’re both white. She also said, in response to Gale’s saying that Diane was wearing a medical mask: “I guess I was supposed to laugh at Gale’s description of Diane, but most folks don’t wear medical masks for the fun of it. What immediately came to mind is that maybe Diane is sick in some way. Maybe she is anxious to go home on Thanksgiving because it’s her last Thanksgiving with her family.”
There are a lot of things here! I have a lot of feelings about this. First, people wear medical masks for a lot of reasons. You don’t need to be dying to wear them. You might just not want to get whatever viruses people on your germy airplane have. Second, here’s the thing: I happen to have an incurable, semi-debilitating, supposedly progressive illness, and it really doesn’t give me (or anyone else with an illness) license to be a dick to anyone. When I used to fly with an injection kit, I would fly with a doctors note saying I could have my syringes on the plane, and do my best to make sure that I wouldn’t inconvenience anyone with all my weird medical equipment. People who are sick don’t actually get to be rude. In fact, there tends to be quite a burden on us to be sweet little angels and role models and heroes and give everyone else something to aspire to (I forgot that people like to aspire to disease… Could someone explain this to me?).
There are a lot of things I want to say. The one I’m gonna say is that if the only type of privilege we think about is racial, anyone who is not white can look at anyone who is white and say “that person has it easier than me,” and that’s a really boring way to live. That’s not how to do the human experience. Perhaps nobody has ever judged me unfairly for the (extremely pale) color of my skin, but medically I’ve probably had a more difficult time than most (young) people, and if the only privilege we talk about is the racial kind, we ignore all the other experiences that differentiate us and add difficulty. When the only privilege we talk about is racial, we don’t learn how to talk about other things. I recently had two wonderful conversations, one with a friend who works at a summer camp for children with illnesses and disabilities and one with a friend who has Crohn’s disease, and thus learned two things: 1) as a society we have made things desirable which are not attainable for everyone because of the bodies they live in, and 2) most people have no fucking clue how to talk about this issue. They don’t know how to approach it with humor or with kindness or with an open mind. And because we’ve decided to make these things (like drinking alcohol, or going to summer camp) desirable, we pity the people who can’t do them. Maybe this is the whole issue, that we look at things in terms of have and have-not, in terms of privilege instead of something else. Maybe I’m more interested in what have you experienced, what can you tell me, what are your nuances, but maybe I’m just privileged enough to get to ask those questions. Meta.
Hey, Liz Dwyer, what if one of the flight attendants that Elan Gale said he was sticking up for wasn’t white? Does that change your view? What if he’s disabled, and Diane is just some paranoid jerk wearing a medical mask? What if you have no interest in their back-stories and like to try to generate controversy?
What if I’m just resisting the license you’re trying to give sick people to be mean to people because I want to keep trying to be a nice person? What if every blog post about a live-tweeted incident falls apart at the slightest tug?
Sorry that this is long and sorry that I’ve been absent, my computer stopped functioning! Hilarious, right? No. But I’m typing this on my phone so it’s a mess. Love and happy thanksgiving! Also, a very very happy anniversary to the best boyfriend around, Nick.
A long time ago, I think I decided (without thinking about it first) that doing things that were meaningful, like being an activist, was too difficult because disagreeing with people and speaking up for myself was too hard and I didn’t want to do that stuff anymore. I had tried to be a member of the disability rights group on campus and I felt at the time that there wasn’t a place for me there because I use medication to treat my disability and some members of the group felt that the social model of disability was the way that people with disability should conceptualize things.*
So I stopped showing up. And I kept not showing up and I kept taking my medication and I didn’t have to disagree with anyone about it and I didn’t have to think about what it meant to conceptualize things in terms of the medical model of disability.
It is easy to not be an activist. It is very easy to not talk about things. It is exceptionally easy to let that become a trend and it is easy to stop talking and to stop writing and to let a blog which you (I) were (was) proud of just suddenly disappear.
Exactly a month ago, an email appeared in my inbox from my dad (with no subject line) which read “where’s da blog?” and I didn’t respond to it and I continued to not think or speak or feel. I continued to take my medication and not talk about it. My boyfriend asked me how I was feeling and I suggested that maybe we could schedule a regular time to talk about such things. Maybe once a week? We did not get around to scheduling that talk. I let MS slip out of my life.
Don’t get me wrong, I continued to treat it, I turned in my accommodation request forms at my university, and I took care of myself. I just stopped thinking.
And then two nights ago, I decided to do something different. I went to a discussion entitled “Privilege, Ability, Wellness, and Policy” about disability on campus at Wesleyan. And when we were asked to write down a story of how ability or disability has affected our time at Wesleyan, I wrote this:
This is a story that I have been hesitant about “going public” about, mainly because I have absolutely no proof, but you know what? Fuck it. It happened almost three years ago, and I’m tired of hiding it. My class dean was entirely in the wrong. I can say that she was entirely in the wrong because I didn’t take medical leave and now I’m a senior and I will graduate with more than the required number of credits. With one major as well as one certificate. Having taught my own class, having participated in extracurricular activities, having had friends and having felt happy. And I’m tired of covering for her, she’s the one who made a mistake, and she’s the one who said the wrong thing. I shouldn’t have to hide what she did. She should feel ashamed, not me. So, anyway, two nights ago, I went back to basics.
I went to the discussion and I spoke up and I talked about what changes I think should be made to policies on my campus regarding disability. There happened to be a meeting of the disability rights organization immediately following the policy discussion, so I stayed for that too. Back to basics. For me, “basics” should mean “activism” and it should mean “speaking up” and it should mean “blogging” even if that feels self-centered because maybe I can, in some way, create positive change.
Hi Dad, this is a response to that email you sent a month ago. Also, happy birthday! See you this weekend.
*it should be noted that this seems to no longer be the culture of the group on campus that I’m referencing in this post.
My mom and I did a really cool thing today! We did the Eleventh Hour Lecture at the Iowa Summer Writing Festival. It was fun. Our topic was “Approaches to Trauma Writing.” Some people in the audience said they wanted our lecture notes, and I said I would post them on my blog so they were easily accessible. I’m putting in a page break so they don’t clog up my main blog page, so you’ll have to click past if you’re interested.
Thank you so much to everyone who came to the lecture! It was a really great experience.
I literally haven’t blogged in two months so this must be a special occasion, right? (or I’m just done being lazy and I miss blogging?)
It is a special occasion. No, it’s not a belated Mother’s Day post. Or, partially it is, but today is also my mom’s birthday.
Happy birthday, Mom!
My mom turns very old today. Just kidding, she is quite youthful and lovely, and you probably couldn’t (or wouldn’t) guess how old she is anyway.
Some cool stuff about my mom:
- she also has a blog, and though she hasn’t updated it in approximately forever, you should go read it if you haven’t already. It’s called Favorite Household Object, and it’s a meditation on different household objects. Click here!
- she also writes real stuff. Like two books, one of which is about me (but actually! I mean, kinda. I was a baby, so I’m not a super interesting character) and the other of which is an anthology of trauma writing which I use when I teach trauma writing workshops. Because my mom is the expert.
- my mom has a ridiculous amount of medical knowledge which is apparently required to be a parent in my family. She has to deal with my MS, the seizures I had as a kid, Jacob’s asthma and allergies, and Ben’s partial finger amputation. She’s done IVs in our kitchen and dressing changes in the living room. That stuff takes guts. And brains! You guys, my mom has guts and brains.
- she’s the mom that you would all wish you had if you realized how much your moms suck compared to my mom.
- we steal each other’s clothes all the time. Also, the clothes I love the most are the ones she had to persuade me to even try on.
- she runs the world’s most unproductive farm: two insane dogs, four cats with very distinct personalities, and my guinea pig (who is currently living with her instead of me, cry cry cry)
- she’s smarter than everyone else. Because I said so.
- she and my dad traveled the world before I was born and lived in Guatemala, Mexico, and Thailand. She’s also lived in England, France, and Spain.
- it’s her birthday, and I wanted to do something special, and I’m in Connecticut instead of Pennsylvania and too tired to write anything coherent. I hope ya like it anyway, mom. You’re awesome! Also, I hope you like the weird vintage jewelry box I found you that says something in French that I don’t understand because I definitely don’t speak French anymore…
Happy birthday, I love you! You’re the best mom. And I don’t care I DON’T CARE clever person on facebook who said on Mother’s Day “not everyone on facebook’s mom can be the best mom” because my mom is the best. Back off with your cynicism.
Oldest Child aka Cade aka Missylou (thanksmom)
….and now for several pictures!