Tag Archives: why is this hard

Reactions, part two: Social aspects

In my last post, I talked about the painful physical process of the near-fatal allergic reactions that I’ve been having since the age of 14. In this post, I want to address the aspect of these “attacks” that is, in some ways, crappier than the actual attacks: peoples’ reactions.

Often when I mention that I am allergic to certain foods — when I am, for example, meeting people for the first time in a situation where there is food, and where these issues may come up — I do not mention that my allergies are potentially life-threatening, as I’ve learned my lesson from some of the past responses of certain acquaintances:

“So you could die from eating peanuts? I’ve never heard of that.”

“I knew this kid who was allergic to [food], and he almost died.”

“Whoa, if I couldn’t have [food], I would, like, die/miss it soooooo much. Do you miss [food]?”

“Peanut allergies are so over-diagnosed! Parents these days are way too overprotective of their kids.” (Hilariously enough, this one gets trotted out in regards to some other disabilities/health conditions as well.)

“Are you sure you’re allergic? It could have just been a one-time thing.”

“How much of [food] could you eat before you’d have to go to the hospital?”

It could be that some of these folks are just trying to make conversation (particularly in the second and very last examples), but most of these responses have left me either totally baffled or itching to make some sort of snappy comeback. Because I am a fairly polite person in my day-to-day life (no, really!), the times that I have made snarky comments in response have been relatively few. While the disability activist part of me firmly believes that I have zero imperative to politely respond to cluelessness about something that could kill me (and almost has), my own social programming tends to stop me from doing or saying anything rash. The thing I resent, though, is that sometimes I am treated like a human “learning experience” of sorts — some people, once they find out about this health condition of mine, become convinced that they can bounce their conspiracy theories about how all peanut allergies are caused by anxious parents off of me, or delight me with anecdotes about this kid they know who was allergic to, like, everything and was in the hospital for a month this one time. Or perhaps they get really bad hay fever in the springtime, and they are just so excited to find someone who knows how annoying and awful allergies can be!

Somewhat ironically, the most heinous unsolicited comment on my reactions that I ever got was from a friend of my mom’s, who had known my family for a very long time. This woman was of the ardently “spiritual” sort — this is not, in itself, a bad thing, but in her case, parts of it happened to translate into a long-standing belief in the universal applicability of “alternative” medicine and mind-body integrative healing. One afternoon, this person phoned my mom in an utter panic, convinced that she knew the reason for my scary and bewildering allergy attacks. She had a piece of proof that no medical science person could possibly have:

“Anna is faking her allergy attacks to manipulate and control you!”

This is not something that anyone, particularly an already-frightened 16 year-old who has no idea why she still gets these attacks spontaneously, should have to hear. My mom, to her credit, excused herself from the conversation with this person, and then told me about what had happened — adding that should this person call back, I did not have to speak to her if I did not want to. (Which I did not, for the record.)

In that interaction lies one of the most crucial issues regarding the way many people with disabilities are treated: Those of us with potentially life-threatening health conditions are never to be trusted. Those of us with chronic health conditions are never to be trusted. Those of us with disabilities must be faking it to get attention, to gain the upper hand in whatever way we can. We must be using our conditions as excuses to get pity from those close to us, or from anyone, really. We must be faking — things can’t really be that bad. That dire. That frightening to us and those who are close to us. Those of us without “objective” proof are constantly suspect, constantly under scrutiny from nondisabled people (at times, even from other people with disabilities); a similar process is at work even for those who do have “objective,” concrete proof of their disabilities or conditions. Are you sure you’re allergic? You could eat peanuts if you really wanted to, right? She’s just acting like that for attention. She’s just using it as a get-out-of-[whatever]-free card. Well, I’VE never heard of that! Are you sure it’s not just psychological? I knew this one guy. . .

That burden of proof has always been on those of us with disabilities and/or health conditions. And sometimes, it’s a burden that feels almost unbearably heavy. No matter how scary the condition you deal with can be, someone always has a question about it, or a theory, or wants to try a misguided attempt at solidarity. Well, you may be thinking, would you rather not have people react at all, since you’re complaining about it so much?

What I would rather have happen is for people who do not have my condition or similar health problems to recognize that, for once, they may not be the experts on something that they have never experienced, or that I do not have any sort of “ulterior motive” simply by having a health condition that just happened to come out of nowhere, or that I may have heard the “do you miss eating [food]?” question countless times. Or that I have a lived experience that is just that — my experience — and that it is different from theirs. For me, simply having that be okay — in other words, not subject to constant monitoring, anecdotes, questions, guessing at motives, trying to find “common ground” based on a pretty uncommon issue¬† — would be enough.

Caption This

The other day, I was bemoaning, as I occasionally do, the fact that HBO doesn’t provide digital content for people who are not HBO subscribers or who can’t get HBO where they are. I happen to be a fan of several HBO shows and I would really like to watch them as they air, rather than having to wait for DVD releases. While the network and cable models are different, I would be perfectly happy to pay for an access pass to watch HBO shows when they air, but HBO doesn’t provide this as an option. I used iTunes as an example of a platform that HBO could use to release content, following the model of the networks.

FWD reader codeman38 pointed out that iTunes doesn’t provide captioning for its television shows. Way to go, iTunes.

Captioning of online content is an ongoing problem. iTunes isn’t the only content provider that provides captions indifferently, if at all. Hulu captions some things and not others. Amazon Unbox does the same. And so forth. codeman38 pointed me to a recent post grading various online services on how well they provide captioning and it’s an illuminating read.

‘…it’s a blame game. Apple blames studios. Studios blame Apple. Nothing gets done,’ codeman38 says, and the same holds true for broadcast. While the networks and cable providers have captioning available, individual stations decide whether or not to offer it in their markets. That’s why, for example, some of my readers at this ain’t livin’ report that Glee airs without captioning while others say it is captioned.

Deaf and hard of hearing folks have been campaigning hard for captions for a long time. Marlee Matlin is a major champion of captioning for online content specifically. Captioning is a huge accessibility issue, especially online, where sites routinely provide video that is not captioned or described. This isn’t just a problem for folks who are Deaf and hard of hearing. It’s a problem when content is only accessible in certain countries; if I post a Hulu video, for example, only people in the United States can view it. It’s a problem for people with visual impairments, for people who have difficulty watching and processing video, for people with bandwidth restrictions, for people who are at work and don’t want to disturb people. There are all kinds of compelling reasons to make captions and descriptions of video content universal.

Apple claims to be ‘committed to accessibility.’ Yet, like a lot of companies and websites that talk a pretty talk about accessibility, Apple falls short of actually living up to the claims.

The Internet is an accessibility nightmare, and very few people seem concerned about it, unless they have disabilities that make interacting with digital content challenging. When Marlee Matlin can’t convince Apple to commit to captioning all of its content, how can unknown disability rights activists hope to accomplish it? When numerous campaigns pleading for accessible content get ignored, when captioning is considered a ‘special feature,’ it sends a very clear message. That message is: We don’t care about you. We don’t care if you can access our content. You are not someone we are interested in having as a viewer, reader, or customer.

What can we do about this? Well, we could start by sending a clear message to companies that don’t care about accessibility issues. How would Apple like it if customers boycotted content that wasn’t captioned? How would Hulu like it if people refused to watch or link to videos that were provided without captions? How would the networks like it if people canceled their television service until local affiliates started using captions? If folks who don’t need captioning still identified it as an important feature or even a dealbreaker, companies that aren’t providing it would start to take notice and do something.

Putting the onus for accessibility on the people who need accommodation is unreasonable. And it makes the problem seem like one that only applies to ‘those people.’ The toleration of the attitude that it’s ok to routinely deny access to a group of people is what leads to widespread inaccessibility.