The Ice Is Not Enough

Oh, the ice bucket challenge. You probably already know what I’m talking about, but in case you somehow don’t have Facebook/don’t have the type of Facebook friends who dump ice on themselves in shared videos (you lucky thing, you), click the links. 


I’m kind of not a fan? Is that bad to say? There are already a handful of things online about how the ice bucket challenge (a thing I refuse to capitalize) is a really self-centered form of activism (“look at me! I’m doing something good for the world! And aren’t I pretty?” -everyone doing the ice bucket challenge). 

I guess coming from my perspective, it feels a little different than that. Of course it’s self-centered, but most forms of fundraising for causes are self-centered. You do a good deed, but you also get a t-shirt you can wear that says something about how you did a good deed. You do a good deed, but you also get to ride around on your bike in front of cheering people who are afflicted with some terrible disease and then people give you medals. All of this is about drawing attention to the fact that you, good-deed-doer, are awesome and everyone should notice. At the root of this is money, the money that you are giving to the cause of your choice, but let’s be honest, that’s kind of not the point. And in the ice bucket challenge, giving money isn’t even the goal, it’s a cop-out for those who won’t dump ice on themselves. 

As problematic as that all is, let’s talk about the ice itself. Supposedly, the ice bucket challenge is done to simulate the symptoms of ALS and show the pain that ALS patients endure. A pain that, if you believe the ice bucket challenge videos, is suffered by young folks with nice tans in summer clothes outdoors, and lasts about 5-10 seconds and is then followed by giggling. What are we raising money for again? These videos are also intended to spread “awareness,” but awareness of what? In most of the videos that I’ve seen, the person only briefly mentions ALS/donating but doesn’t mention anything about what the disease is, where donations will be going, or even that the ice-dumping is (again, supposedly) about symptom simulation. They don’t even say “amyotrophic lateral sclerosis,” because what, that would be too many syllables? 

I know that ALS is not MS (though they share some symptoms, but ALS kills you, and MS doesn’t, etc), but I can’t help but imagine the MS versions of this challenge. The Spin Around Until You’re Dizzy and Throw Up Challenge? The Lie On Your Arm So It Goes Numb Challenge?  The Lie In Bed All Day With A Migraine Challenge? What about the cancer, Crohn’s disease or diabetes versions? These don’t sound like super entertaining videos. The reality is that most symptoms of diseases are not pretty, and simulating them doesn’t make for attractive little 30-second clips out in the sunshine, because they aren’t anything you want to re-create. Somebody somewhere decided that a bucket of ice was similar enough to the pain and numbness that ALS patients feel. Somebody somewhere trivialized illness. Did they have ALS? Are they a doctor? Maybe, but that still doesn’t make this an okay thing to do to the rest of us dealing with chronic illness. 

Back to those people biking around for attention I mean causes: earlier this summer, I stopped by (seriously, for like five minutes) the MS Bike-a-thon in my hometown and was horrified. I saw a lot of people riding around in the heat on bikes. I have MS, which means (for me) that I can’t deal with heat, or balance on a bike very well. Participating in the MS Bike-a-thon would be fairly close to impossible for me. It would involve a hilariously unflattering ice vest and like… training wheels. It wouldn’t feel empowering or exciting. Marathons for cancer and walk-a-thons for muscular dystrophy fall into that same category, it seems: do stuff that sick people can’t do to raise money for them. Why? I’ve heard the response of “we’re doing it for you,” and I wonder what you guys think that means. Do you think I would rather watch people who I’ve never spoken to bike “for me” or do something with them? I would rather talk to them and have a conversation and do an activity that we could all do so that they knew exactly who and what it was that they were raising the money for. I would rather be included than pitied. Fuck them biking for me, because as a disabled person, I value the things that I can do, and I value my independence. I don’t need people who I’ve never met to do things because I can’t. 

Maybe this isn’t the right answer for some people, those who suggest that it’s okay because face it, it’s raising tons of cash. I wonder, though, why the money needs to be raised like this? What about the “nothing about us without us” slogan? Sure, that’s primarily used in regards to disability-related policy-making, but it can also be applied here. What if, instead of sharing a video of yourself drenched in cold water, you shared a piece of writing or art by someone with ALS? Or someone with any of the many other diseases/conditions that affect people, which would also benefit from donations to further necessary research. We’re talking, our voices are here, and they’re why people should care (and donate, if they would like to and are able). Not because someone unconnected to the cause looked into an iPhone camera and laughed a bit before saying “come on, guys, it’s the right thing to do” and then dumped ice on their head. Because of us. 

A Letter to My Very First Neurologist (Ish)

Dear WebMD,

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.

4 Things To Do Instead of Getting Pregnant Before You’re 4

I think I found someone who I really dislike on the Internet. That’s not how I want to start this post, but it’s how I’m feeling, and I’ll be honest. What I don’t like about this person, this Vanessa Elizabeth, isn’t her opinions, which many of you have probably seen by now, in a viral post entitled “23 Things to Do Instead of Getting Engaged Before You’re 23,” but the way she has decided to react to people who disagree with her, both in the original post and in the aftermath.

The whole premise of her post is that people her age (our age, my age) aren’t mature enough to get married, which she would be right in thinking if all of her friends are as mature as she is and that’s all she’s seen. See, now I’m a jerk, too. I don’t like this girl.

I’ve been thinking about this for a few days and I haven’t been getting more articulate, it seems.

I don’t like that she pretends that she’s talking about marriage, but what she’s actually talking about is commitment. I’m in a committed relationship. By that, what I mean is that I don’t wake up every day wondering if I would like the relationship to continue, or if my boyfriend is considering ending things. He is someone who I can count on. We’re in it to win it, or we’ve already won. Sap! I’m not saying anything about marriage here, because that’s not what I’m talking about, I’m talking about commitment, and I think that’s what she’s talking about, too. While she pretends to be against people just getting married young, which I understand the arguments against (though I think that people should just let each other make their own choices and shut the fuck up about other people’s choices, but whatever), all of the things which she says are arguments against getting married young are actually arguments for staying single. They’re arguments for making out with strangers or being alone or not having a significant other to grow with. They have nothing to do with the legal/religious/meaningful/however-you-want-to-think-about-it union that marriage is. It’s about commitment. So why is she pro-single? That’s an argument that she has ignored entirely. What makes me sadder is that people who are in committed relationships have become supportive of her argument without seeming to notice that she would have them make out with strangers on the regular. She’s not pro-commitment, pro-dating, pro-love, or pro-union, she’s pro-one-night-stand, pro-single-girl. Which is fine, and people should not call her a slut because that’s stupid, but her argument is not what it pretends to be.

I don’t like her because she’s not about discourse. She deletes comments on her Facebook page which are negative and she just wants clicks, because she wants to be provocative. She’s created some image that makes no sense. Her page claims in one section to be more than just her (using “we,” as though “Wander Onwards” is some big multi-person enterprise that we should respect), claims to encourage wellness while also promoting excessive sugar and alcohol intake, claims to be about making Asia accessible to Americans while complaining constantly about the difficulties of living abroad, and is really just there to promote her as a brand. She’s clickbait. She’s a Vanessa-no-last-name-Elizabeth. She’s all sass and very little substance, which is fine, but not especially interesting, and the fact that she openly mocks her “haters” (people who try to disagree with her, usually with well-reasoned comments) and just wants  more views shows that she’s not about thought or conversation. Her views matter, not yours. Which sucks, and I wish she didn’t act like that, because she’s being a jerk and making me feel like a bad feminist for daring to disagree with another woman, especially one who’s attacking The Institution of Marriage, but since she’s mean and doesn’t want people to disagree with her on her page, it’s what I’m up to. Hi.

And, anyway, I don’t like her because I don’t think she understands the human experience. I don’t like her because

  • I’ve completed 14 of the 23 items on her supposedly satirical list
  • 6 of them just made me feel sad, and they made me feel younger. They were signs that I needed to grow up
  • Some of them were more fun with someone by my side, or would have been more fun had I not been alone
  • a few made me lose someone I cared about
  • the tattoo behind my ear is blurry already and it’s only been two years. And I hope that people spend a bit more time getting to know the person they marry than they spend getting to know their tattoo artist.
  • one of the items on her list, “sign up for CrossFit,” is just her promoting her employer, which is gross
  • the 9 that I haven’t done aren’t necessarily things I’m interested in

I don’t know. Something about her just makes me so angry. I think a large part of it is that she’s in China promoting CrossFit (find me a stupider reason to be anywhere) and she seems to have decided that moving a body across the globe makes that body more valuable. Travel is great, travel teaches you about different cultures, but deciding that travel makes you a better person is classist, and idiotic. Not everyone has access to higher education, and not everyone wants lots of sexual partners. The value system that she has created in her post is interesting in that it makes the life that I’ve lived thus far “valuable” because I am a young, liberal woman who is completing a college degree, has changed religions and career paths, has lived alone and traveled, and has dated people, but it makes me angry that she values my type of life above other people’s lives. My choices haven’t all been right and they haven’t always made me happy. I’ve read some of her other posts, and she doesn’t always seem happy, either. Maybe she would be happier if she didn’t constantly attempt to validate her choices solely through negating other people’s lifestyles and promoting her own.

Maybe that’s utopian and maybe that’s stupid but maybe suddenly one day you stop thinking that you’ve made all the right choices and gain some humility. It happened to me, once upon a time. But until then, she shall wander onwards.

Love and Happy New Year,


PS please excuse the title, I couldn’t resist

Naked Women Are Not Inherently Bad And Other Obvious Thoughts


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.

What We Talk About When We Talk About Privilege

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.


Back to Basics

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.

Lecture Notes!

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. 

Continue reading “Lecture Notes!”