Kamis, 04 November 2004

A Silent Minority

The Americans with Disabilities Act (ADA) is a Federal civil rights law that prohibits discrimination against people with disabilities in everyday activities, such as buying an item at the store, going to the movies, enjoying a meal at a local restaurant, exercising at the health club, or having the car serviced at a local garage.

My mom recently asked a friend why, if the ADA has existed since 1992, things are still so inaccessible. The friend’s answer was succinct: “People with disabilities comprise a silent minority.”

When my mom relayed the story to me I scoffed at the word “silent.” I’m the opposite of silent. My roommate needs ear plugs to study while I talk on the phone, and my laugh is so cacophonous that entire restaurants filled with people have stopped chewing to turn and gape at me. I’m decidedly extroverted, yet increasingly disabled. Loud + Disabled = A Silent Minority? I don’t think so. Plus, I’m as open about my disability as possible. Short of tattooing “I have multiple sclerosis” across my forehead, I do everything I can to assure that strangers understand why I fall over in public, why I use a wheelchair to grocery shop, and why I need someone else’s barstool in a bar.

Clearly I have no problem discussing my disability with anyone who asks (or happens to be in the way). But when it comes to advocacy my mom’s friend was correct: I am silent. Not only am I silent, I’m apologetic. I’m riddled with guilt whenever someone stands in the rain for an extra few minutes to open a door for me, or when someone in Safeway reaches an item off of the top shelf for me. I genuinely don’t want to ask someone for their seat in a bar, and I feel horrible asking friends to take me to the bathroom in restaurants. At this moment, I’m the only 26 year-old I know who genuinely needs assistance getting from point A to point B to ensure that I don’t wobble into a stranger, lose my balance and fall over or, most horrifying yet, injure myself in a bathroom and rely upon an ambulance to extract me from a hotel room (it’s happened). Often I use my wheelchair and get myself stuck between doors, or find myself asking for help when something remains just out of my reach. Invariably, whether I’m grabbing onto a stranger’s head for balance, or asking someone to open the door a little wider so I can dislodge myself from an entrance, the action or request is always followed by an overt expression of guilt that boils down to a repetitive, “I’m so sorry.” Then I smile as sweetly as possible, internally remind myself that I didn’t choose to knock the guy’s toupee off, and continue on my way.

One of my teacher friends refuses to let his students use the words “I’m sorry.” He says there are enough “sorry” people in the world, and if you’re truly contrite it is better expressed through the words “I apologize.” When he told me this I laughed, but didn’t necessarily agree. It made me think, though. It also made me increasingly cognizant of how often I use the phrase “I’m sorry.”

Sorry, according to Roget’s Thesaurus, connotes both regret and remorse. It’s also synonymous with sadness. In all cases, the word fits my circumstance: I truly am sorry that my friends have to help me get to the bathroom, I regret my efforts to get through heavy doors with my wheelchair, I’m remorseful that I’m not able-bodied, and when I want to purchase a gift at an inaccessible store, my frustration yields a certain level of sadness. Having multiple sclerosis makes me mourn things I never used to appreciate: shoveling snow, vacuuming, shaving my legs without sitting on the floor of the tub, or even cleaning the toilet without fatigue. I watch my roommates take the garbage out and get ready to go out without constant concern about whether they’ll be able to stand later that evening. They’re able to clean the house, work out, help with my laundry and shower – all without falling over. This, to me, after a mere seven years with MS, is remarkable. At the same time, though, I clearly remember my disdain for such tasks: no one enjoys cleaning the toilet, fatigue or not. Which is why I feel so sorry – partially for myself (because the only thing worse than cleaning a toilet is wishing you could) but mainly for the friends and family members I impose myself upon constantly.

It’s interesting to me how guilty I feel; even when others love me unconditionally. I know my mom will still love me after she goes up and down the stairs for the fifteenth time collecting imperative things that I’ve forgotten from my room, but I still feel awful. Consequently, I apologize. My resultant overuse of the word “sorry” once caused my roommate to unintentionally fling me on the floor of a restaurant because she moved abruptly to admonish my sixth consecutive utterance of the phrase, “I’m sorry” (I kept stepping on her heels). Her sudden movement caused me to lose my balance entirely (which was placed, in my opinion, burdensomely, on her shoulders) and I ended up underneath the bar, across the room. I feel even worse when I startle strangers – when people who don’t love me unconditionally have to get the Ben and Jerry’s out of the freezer for me in the grocery store, or when strange life guards at the YMCA have to scrape me off the slimy pool deck because my legs won’t support me and my feet refuse to work on slippery surfaces. People have held their umbrellas over me while I struggle with my slippery metal wheelchair in the rain, have pushed me out of puddles when I’m stuck, and have pulled and pushed me up stairwells. I feel like these poor people will suffer at least some level of emotional trauma as a result of my occasionally tear stained face, or that their lives will forever be tainted by the strange girl who lost her balance and grabbed onto them in the Gap.

Someone wrote once that as a person with a disability, you “have to be the kind of person that others want to help.” For me that translates to openness about my disease, to constant apologies regarding my needs, and to an overly active sense of humor – all of which I use to compensate for my self-acclaimed burdensome nature.

I thought about these things a lot: whether I do, in fact, represent part of a “silent minority,” why I feel so guilty, and why my ex-boyfriend told me I “apologize too much.” And after thinking about it and talking about it and even praying about it some, I decided that my definition of the word “silent” was limited and that my mom’s friend, on some level, was right. I view the word silent as exclusively synonymous with the word “quiet” (which I’m not). But silent also means “unvoiced” and “unspoken,” which, when it comes to things I need, is true. I am far more likely to apologetically ask for help, than liable to demand that restaurants/stores/gas stations/bars etc. are made accessible. My roommate summed it up concisely when she suggested, “You make up a population of silent people because you already feel too damn guilty about asking for help.”

I wonder, if the ADA’s objective were achieved (it was, after all, passed twelve years ago), would I need to be “the kind of person others want to help”? Would I need to constantly apologize, or make sure to be open and funny and warm if I could achieve my objective without assistance? I doubt it. I’d be able to reach things in grocery stores, get jeans off the shelf in the mall, and get myself through doors at the gym. I could save my overuse of the word “sorry” for my roommates, continue to mourn my usefulness in the kitchen, and help myself in public. I do comprise a silent minority right now – I am careful with my energy and I’m particular about the battles I choose to pick. I wonder, though, when this will change; when the ADA will offer more than lip service and will provide an entire population of people with disabilities the chance to stop feeling guilty all the time and accomplish things on their own. In the meantime, maybe it’s time that I wean myself away from the phrase “I’m so sorry” and speak up about the things that really need to be said.

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