Thursday, June 6, 2013

High Maintenance

There's no justification for ableism, just as there's no justification for any kind of prejudice. In my experience, though, when it comes to ableism, there are explanations. For example, thing … we are pretty "high maintenance".

"High maintenance" is an insult usually applied to individuals perceived by someone else as being picky, demanding, never satisfied with the standard, but always asking for a customized version of whatever is on offer. It's the person who always wants their salad dressing on the side, milk instead of cream in their tea, their bacon extra crispy in a restaurant. It's the person who always insists on taking extra time to get ready, is easily offended, or who must hear from you by phone or text at precise intervals. "High maintenance" tends to be applied disproportionately to women, (that's called "sexism"), even though the world is full of controlling guys who could just as easily be called "high maintenance" if we didn't already call them "abusive".

"High maintenance" begins with someone's collection of very specific, very uncommon needs, but it's really about how other people perceive the needs and react to them. Behind the phrase, I think, lies two assumptions: one, that there's something phony and attention-seeking about these needs, and two, that since the standards always seem to be shifting, we can never really satisfy the "high maintenance" person and might be better off steering clear of them entirely.

Well, people with disabilities have all kinds of "special needs" and requirements that other people very quickly find can be a pain to meet. We need buildings to be accessible, and since many still are not, that takes work and expense. Almost accessible isn't good enough, either; one step is as much of a barrier as a while staircase. Some of us need to use different modes of communication than most people, such as Sign Language, large print, or braille. Many of us need more time to complete assignments or tests in school, have lists as long as your arm of foods we can't eat, and may not even be able to sit in an ordinary chair when we visit your house or go with you to the movies. We have to plan ahead twice as much as others, and we have fewer alternatives to choose from when things dn't go right.

No matter how well prepared and independent we are, our needs are not just our own, they belong to everyone we come in contact with. From a purely technical standpoint, we are just more "high maintenance" than most non-disabled people.

Here's where there are two crucial differences though:

First, our "special needs" are real, iron-clad, entirely practical, and inescapable. We can't decide to not need them. We can't shrug them off just to make things easier on others. Often, the only way to do that is to stay home where presumably we've adapted our environment as fully as it can be. But if we want to live a life, we have to impose a bit on others, which means making a daily decision that it's okay to be a bit "high maintenance". So, if it sometimes seems like we don't care how much of a bother we are being, understand that it may be the only way we can deal with our situation without retreating into a cocoon.

Second, it may seem like nothing's ever right for us, but it just seems that way because the needs are unfamiliar to you and require more effort than you may be used to giving. The majority of us who are not truly "high maintenance" in the worst sense, (don't get me wrong, some of us are, we're human), will do our part to make our needs understood and as easily met as possible. Here's where the unique beauty of accessibility modifications comes in; the more accessible the world becomes, the less "high maintenance" we will be.

Finally, if our needs sometimes seem endless, ill-timed, and annoying to you, imagine how they feel for us. Though it's not a nice thing to do, you do have the option of walking away. We can't. So, sometimes, some days, we feel the need to shed the humble self-deprication, and embrace our inner divas ... to be "high maintenance", confidently and without apology.