Thursday, October 18, 2012

Disability, Humility, and Asking for Help

TRIGGER WARNING-- contains themes of silencing disabled persons, strong language, and if something else in here bothers you, please let me know, and I will revise the trigger warning so that it will not offend any further parties.

I used to resent my parents because they were always making my decisions for me, and generally fighting against my wishes. One day, however, I realized I didn’t resent them—I resented myself for needing them to do it.
I generally put on a good show for people. I’m not shy about telling them I’m disabled, because for me it eliminates a certain level of anxiety about whether some symptom of mine will alarm people. The first thing they generally learn about is the Tourette’s—how could you not bring up the elephant in the room shouting “MOO MOO!” and contorting her body in a weird fashion? But by the nature of the conversation, I can almost never avoid talking about the other, less obvious elephants. My Tourette’s may be the most visible, but it is probably near the least of my worries when it comes to my health.

Today, I’m here to share my thoughts and experiences with being a disabled person. Believe me, this is pretty triggery, most of all for me. But I am not doing myself, or anyone else any favors by pretending to be like the “Hallmark disabled people.” I owe you guys a brief explanation of what I mean by that term. Simply put, almost every time you turn on the TV, watch a film, or read an article in a magazine about a disabled person, undoubtedly there is some very happy messaged tied in with it. Front of the Class is the name of a documentary about an elementary school teacher with Tourette’s syndrome. I thought the program had a good intent and all, but at the same time I felt very, very isolated by it. For the small, though significant chunk of people who have Coprolalia into adulthood (a Tourette’s symptom—simply put, it’s the involuntary uttering of obscenities) who will never be allowed to work with people because their “disability keeps them from performing that task” (read: we don’t want you swearing at our customers), this film made by the company Hallmark paints a much happier ending than what I’m going to bet most of these adults get.

While I certainly do not hold any grudges against other people with disabilities who choose to write positively about their experiences, I very often feel isolated by the stories that only show the happy parts of being disabled. Guess what? The “dis” part means we are not always doing that great. We have to ask people to do things for us, and for some of the more severely impaired of us, this means we require 24/7 care. If you aren’t disabled, let me paint a picture for you of what that is like.

Imagine for a moment that you come down with a very serious stomach bug. You physically feel like shit, you can’t drive or leave the house because you will be too far away from a bathroom, and you can’t do much of anything but writhe in pain on the toilet for 24 hours. You need someone to make you food and provide you with liquids so you will stay hydrated. You need someone to do the dishes, the laundry, the daily chores that you are too weak to deal with. You need someone to get you some medicine. You can’t go out to dinner with your loved-ones, and the person in your home taking care of you has their own needs and things they need to do, too.

By asking this person to do something for you, you are humbling yourself. You might even feel like you’re asking a lot of them. And you’d be right, you are. But that doesn’t mean that you need their help any less. And for us permanently disabled folks, this isn’t just a 48-hour case of food poisoning. Some of us may be less home-bound than others, but without a doubt, we all have to learn to ask for assistance. Many things I ask my family and friends to do for me are things that, if I had the energy or the executive functioning, would love to do myself. If it were just a matter of me putting my mind to doing these things, I wouldn’t be considered a disabled person.

I bet you any amount of money that there is a good number of disabled folks in this world are smiling for your benefit—especially if you don’t know them that well. They already feel singled-out enough, and living in a world full of sayings like, “Smile and the world smiles with you. Cry, and you cry alone,” is enough to make anyone show some teeth, even under immense, unhealthy levels of stress. I know I sometimes feel this way. People see a very bubbly, smiley person on the outside, but when I get home after a busy day, I can be a huge, sobbing, un-fun puddle of mess that has to be cared for by her loving, devoted parents and husband.

So, what I ask is not that you throw me a pity party. I do have good days. Hell, there are days where my disabilities empower me. They don’t call them “bipolar upswings” for nothing! But to quote the character Adrian Monk from the show, Monk, about his Obsessive Compulsive Disorder, “It’s a gift… and a curse.”


  1. I have the same feelings about asking for help. Our posts on the exact same topic posted on the exact same day. It's like we're twins separated at birth....*cue spooky music*

  2. I will have to check your blog out, Jim! And that IS spooky. Or maybe it's just the Halloween spirit is finally hitting me.


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