Throughout my short 21 years of life, I have seen and heard a variety of ways people respond to the simple fact that I am epileptic. For a refresher, the Epilepsy Foundation defines epilepsy as a chronic seizure disorder in which the seizures are unprovoked, meaning that there was no outside event like a car accident that would trigger the seizure. These seizures can manifest in a variety of ways, from a lack of presence or awareness to outward muscle jerks or loss of consciousness. That’s the simplified way of defining epilepsy, but overall, it’s an umbrella term for a variety of seizure types that are ultimately chronic and unprovoked in nature.
When my seizure-ridden friends and I get together, we talk about the general awkwardness people can have around us. To be fair, disability can be a scary thing to someone who has never had a disability or has met someone with a disability before. Because of this, people don’t necessarily know how to react. Not because they’re malicious people, but because they’re scared. They don’t understand what epilepsy is and what it means to be an epileptic, and that can be scary for someone who doesn’t fully understand the disorder. So, I took upon myself to compile a simple, partial guide of do’s and don’ts for the way to react when someone says they are epileptic. Because it’s just generally a good idea to not be a jerk about the situation.
DO: Ask Questions
Questions are welcome. Hell, they’re even encouraged. Depending on the person you’re speaking to, there will be a varying degree of comfort with the questions you ask. However, I’ve found that epileptics and people with disabilities in general are good at telling others when they will or won’t answer questions. Sure, you might be nervous to ask something, but you won’t really know what that person’s life with epilepsy or life with disabilities in general is like until you ask. You might even learn something.
DON’T: Ask Pointed Questions
What’s the difference between a normal, non-threatening question about the state of a person’s health and mobility and an annoying question? The clear, unadulterated implication that the individual you’re speaking to should or should not be doing something/saying something/ being present because they are epileptic. Not entirely clear about what I mean? Say you’re at a party with a friend who’s epileptic, and they are choosing not to partake in the libations. You’ll ask why they’re not drinking, and they might say something like: “Well, I’m epileptic.” And that’s if they’re comfortable sharing that.
An appropriate way to continue that conversation would be: “Can I ask what happens if you drink?” If that person is comfortable taking the conversation further, they might say something like: “Well, drinking lowers the seizure threshold, which means I’m more likely to have seizures.”
And then the conversation can continue as normal. The way you may ask someone doesn’t have to be perfect, but it should be polite. Asking if you can ask is important, because it takes into consideration that that individual may not want to answer that question completely or maybe not at all, but you wanted to know because you’re concerned.
Now, here’s the annoying way to ask that question:
“Hey, why aren’t you drinking?”
“I’m epileptic, so I can’t.”
“Wait, not even a little bit?”
“No, I can’t.”
And then you offer the drink anyway.
The annoying question doesn’t have to happen exactly like this. Clearly, this is an extreme case, but one that’s actually happened to me on multiple occasions. But I repeat, it does not have to happen like this. But when it does, it’s annoying and disrespectful. Asking questions without acknowledging what the other person is saying is rude. If you’re going to ask questions, listen to that person. Don’t make them feel badly or out of place for not doing something they can’t because they are medically unable.
Also, once you find out someone is epileptic:
DO: Act Like Everything’s Normal
Because it is normal. While epilepsy is a neurophysical disorder, not everyone who’s epileptic looks epileptic. Expecting someone to look a certain way in order to be disabled is extremely patronizing and insulting. So, someone telling you they’re epileptic isn’t a life-changer. The world didn’t end. The ground didn’t open you up and swallow you whole. Some people are gay, some people are from Omaha, and some people are epileptic. It’s the way the world is. Once someone tells you that they have a disability like epilepsy, do them the respect by living your life as you did before. Unless you’ve been engaging in some Hannibal Lecter-like activities, then I would suggest some major, immediate life changes.
DON’T: Act Like We’re All Going to Break
In case you haven’t noticed already, variety is the key word of the day. Epileptics are not the delicate china patterns your family uses on special occasions. We are people with a variety (hint hint) of health levels and bounce back-ability. I know this one is difficult for concerned people, i.e. family in particular, but it is important to remember. I grant you, family and friends, it is scary. It is scary to think that someone you love will lose control of their bodies, and me making a simple list will not nullify your fear and concern for the safety you have for your loved ones. However, the people with the disabilities are the ones living it. We know how our bodies work, and we know how to fix it when our brains decide to go on vacation. But the average life expectancy of an epileptic is the same as everyone else. The only thing that could possibly stand in my way of a normal life is lack of medication, and what with the drug trade being what it is in this country alone, I highly doubt that will be an issue anytime soon.
Because I’ve had a recent run-in with discrimination and testing accommodations, this’ll be my last set of do’s and don’ts. Because I like talking about things that only affect me.
DO: Understand Epileptics and Others with Disabilities Need Accommodations Sometimes
There are situations in which people with disabilities need extra assistance. It’s not that we’re not able to do these things, it’s that we need the extra time or tools in order to show the results we know we can show. We may need this extra time or these extra tools to show and to reach our potential, whatever level that potential is for each individual. When we do that, we’re able to compete on the same playing field as able-bodied members of society. It’s knocking down those who don’t need it, and it’s certainly not having an advantage over able-bodied people. It’s so we can compete at all.
DON’T: Assume Receiving Assistance Means Lack of Ability
Things like workplace or testing accommodations are there, like I just said, to assist epileptics in reaching their full potential. Do not, and I repeat, do not compare my testing environment or my work schedule to an able-bodied individual and claim that we are the same, making my assistance “unfair” somehow. In fact, don’t do that with anybody, able-bodied or not. Why compare two separate people with separate needs and work strategies and assume that they should need the same things or work in the same environment? Regardless about how you feel concerning my accommodations, what I need to do in order to deal with my epilepsy and do well in school or work or life in general is my business and none of yours. Epileptics and people with disabilities in general can do amazing things and can lead full and productive lives. We have the capability to do anything, but the assistance we receive, whatever amount that may be, makes it possible for us to succeed.
Well, these are just some simple dos and don’ts. It’s not an exhaustive list, and it’s certainly not a conclusive list. Other epileptics or people with disabilities might find this list completely wrong, or they may think it’s totally right. Whatever the case, able-bodied people should can try these out if/when they feel uncertain interacting with epileptics or people with disabilities in general. After all, people who have seizures are just people.