babble

It’s no great secret that we understand new concepts best when they are put into terms and phrases that we’re already familiar with. It’s why i frequently use car analogies to explain to people what’s wrong with their computers. (Example: the minute you pull up to the mechanic’s garage, your car will stop making that terrifying noise; similarly, as soon i take a look at your computer, the error message will stop coming up. Pets, kids, cars and computers - sometimes they exist for the sole purpose of making you look like a great big liarpants.) Keeping that in mind, i’m going to talk about an issue that i am familiar with, in the hopes that it can help me get a better understanding of situations outside my realm of experience. (And i’m going to hope that it doesn’t make me look like a great big ass in the process.)

While i think this post is important as its own thing, it is also intended to be analogous to discussions of race and privilege as i have seen them in and around the fatosphere. I am not looking to earn points with anyone, i am not expecting anyone to give me a cookie for this. The feedback i’m hoping for is not smiley-faces and claps on the back, but rather: how accurate is the analogy at various parts? What parts of it are completely off base? Are there parts of it that are too assumptive? Are there parts of it that are too subtle? (I’m not saying i’m entitled to this kind of feedback, i’m just trying to be helpful.)

As many of you already know, i have a chronic pain condition called fibromyalgia. Let’s say that one day i’m crying on your shoulder about how much pain i’ve been in lately. Or maybe i’m talking to you about how much the pain has recently been upsetting me (because minor physical pain can cause major emotional distress). While you may have good intentions of trying to console me, sometimes the only way you can think to do so is to tell me about the headache you’ve got.

Now, i know intellectually that your headache does not invalidate my backache, but it still feels emotionally invalidating that you are trying to present it as a parallel experience. Most everyone has had at least one headache or stubbed toe or hangnail in their lifetime, but not everyone gets full-body aches like fibro can cause. I think you’re trying to tell me that you understand what i’m feeling, but it’s especially frustrating because i can’t seem to convey to you that you can’t understand. You cannot begin to comprehend just how much fibro affects every part of my daily life, because you don’t have fibromyalgia, nor do you have any similar chronic health condition.

I could come up with a list of 50 (or more) things that i think able-bodied people take for granted. No, they may not all apply to you specifically; hell, you personally may be “exempt” from half of the list. On one hand, i appreciate that because it might mean that you have some empathy for what i’m going through. On the other hand, it doesn’t make that list impact me any less: it still represents things that i do not have the option of taking for granted.

Your headache doesn’t make my body-ache go away. My body-ache doesn’t make your headache hurt you any less. Comparing our unequal pains might be an exercise in empathy, but sometimes it just highlights the differences between us. Your headache may keep you from going out dancing with your friends tonight, but fibro took that off my calendar years ago, and has no intention of putting it back on anytime soon - if ever.

Now, on the flip side of that coin…

Fibro is an invisible illness, which means that when you look at me, you can’t tell that i have it. Most of the time, i look like there’s nothing wrong wrong with me. (I say most of the time, because sometimes an ankle or a knee will just randomly start hurting when i walk, thus causing me to limp for maybe 5 minutes, maybe half the day.)

Is this an advantage or a disadvantage that i can “pass” as able-bodied? Truth is it’s a bit of both. It means that i get strange looks (and occasional glares) when i sit in one of the unoccupied handicapped seats on the bus, or when i use one of the handicapped stalls in a public restroom. It means that if i need to use one of the electric carts at the grocery store, people are going to make some nasty assumptions about me: since i’m fat, they’ll probably assume i’m just being lazy; if i were thin, they’d probably assume i was just being an asshat, or that i was making light of the ultimate purpose of the carts.

Someone who’s visibly disabled is more likely to get a seat on a crowded bus, but they’re also likely to have people talk to them as if they were a hard-of-hearing 5 year old (”DOOOO… YYOOOUUUU… LIIIKE… COOO-KEEEEZ????”), or worse, talking about them as if they’re not even there. Someone in a wheelchair is more likely to hear people talk about how brave they are, and how special they are. Nothing dehumanizes a person quite like being turned into an after-school special: “i am not a person, i am a warning; i am a lesson for you to learn. I exist to remind you of a handful of platitudes that will make you grateful that you’re not me. Once you have heard the lesson you expect me to deliver, you can change the channel and catch up on Seinfeld re-runs. Gee, thanks.” When was the last time you saw a movie starring a handicapped main character for which their disability was not the central point of the plot?

I am disabled and yet not. I am prevented from doing a lot of things that most able-bodied people take for granted, but at the same time i do not have it as badly as someone who is less able-bodied than myself. I am able to understand only some of what they go through on a daily basis - but definitely not all of it.

Why am i writing this now? Several reasons, actually. I hope some of the more general reasons should be obvious, but i want to touch briefly on some specific reasons. On top of all that, these are important issues that are worthy of discussion.

Earlier today i was talking with a friend about politics and the election; during this discussion, the subject of race came up. She lives in a very small town in the south, and has very limited exposure and experience with issues of race. I tried to explain to her the concepts behind privilege, knowing that i myself can only go so far in explaining what i have not personally experienced, and knowing that i myself have not always understood the concept of privilege. So my “help desk” mindset kicked in, and as she and i have discussed my chronic pain issues before, i decided to try to make sense of these concepts to her in terms i was personally familiar with. In trying to help her understand these issues, i started internally exploring the similarities and dissimilarities.

As coincidence would have it, the bus i took this evening stopped to pick up a man in a wheelchair. He paid his fare like everyone else on the bus did, and the driver scooted people out of the handicapped seats so that he could raise them up to make room for the man. It took several minutes to get him situated, and i could hear the discontented rumblings of the other passengers over the music from my headphones. As it so happened, he was getting off at the same stop as i was - less than half a mile away. I could hear more rumblings and exasperated sighs as i was getting off the bus. If i could hear this over my headphones, i know he had to have heard it quite plainly. For context: this area is not wheelchair-friendly. One side of the street has no sidewalks, and the sidewalks that are there exist in varying states of disrepair. Not all of the curbs are ramped. The street is a busy two-lane stretch that is quite hilly, and has limited visibility. That half-mile would have taken him the better part of an hour to navigate, and would involve several points where he would have to go on the side of the road and risk getting hit by a (usually speeding) passing car.

I told Ben about this when i got home, and he smiled as if he knew a great secret, prompting me to ask him what on earth he was smiling about. Turns out that Ben had seen him on the sidewalk just yesterday. The guy was moving his wheelchair repeatedly back and forth in the same spot. Ben went to go see if he was okay, or if he needed help, and it turns out that he was trying to re-seat a water meter cover that had come loose. I know that exact spot, too: the sidewalk is narrow, and in the dark mornings when i’m walking to the bus stop, i’ve nearly tripped on a coverless hole in the pavement. He went through no small amount of effort to make sure other people were able to walk safely over that spot.

But in all of this post, i am not talking about race, and i am not talking about disability. At times, there may be similar themes existing between the two, but the experiences are very different - they are each their own thing. Race is not a disability, and disability is not a racial issue. Experiencing one does not mean i am capable of understanding the full and repeated impact of the other.

Above all else, what these two things have in common (and what i am really talking about here) are uncommunicated and uncommunicative assumptions. Uncommunicable experiences come with that, because the way these assumptions operate, they shut out communication. There is an unstated assumption that someone in a wheelchair must have problems with spoken language. Unless you can get someone can state outright why they have that particular belief, it’s almost impossible to make progress in dispelling it. Talking about these issues makes people incredibly uncomfortable: it’s hard to discuss them without acknowledging our own ignorance, and we often feel compelled to express that our ignorances are not intentional ones. Ignorance is seen as a weakness, as a fault, and people in general have difficulty admitting either of those traits. Our eagerness to evade responsibility for our ignorance can compound the problems.

We are do not all experience the same levels or types of pain. We do not all have equal levels of pain tolerance. I can handle more physical pain than a lot of people i know (and i know some extreme people). But that doesn’t mean i like it, or welcome it in my life. That being said, i have learned many things from my experiences with being invisibly ill. Some of them have been valuable lessons, but sometimes i had to learn them in ways that no human being would want to go through, and in a just world, would not have to go through. I know people who have been through experiences similar to my own, and they have not come to the same conclusions, or learned the same lessons. Some of these folks are far more angry or bitter (and rightfully so) - not only about what they have had to deal with, but also with the way other people have treated them and reacted towards them.

They are entitled to this anger, and it is a just bitterness. These are right and valid responses. Given that, why should anyone let go of them? Navigating through “shoulds” is difficult, as we must provide our own maps, charts and instruments. Instead, let’s ask: why would someone let go of this? There we have the cost of bitterness, and the positive message, effects and precidence in letting it go, and the personal tools and strength gained in the process. How and when a person decides to let go of their anger and bitterness is not for anyone else to decide, nor does anyone else have the right to tell them when or how to go about doing it.

If you’ve made it this far in the post, i thank you for your patience. It’s a huge post, but these are huge issues. I’ve previously kept silent on a number of them because i haven’t felt “qualified” to discuss them; i recognize that much of that was fear of making an ass of myself, and fear of acknowledging and accepting my own limitations in discussing these matters. Sometimes it is necessary to just shut up and listen, but that inaction cannot be indefinitely maintained if one hopes to learn and grow - as an individual, but also as part of a community.