The Americans with Disabilities Act (ADA) is a federal civil-rights law that pro-hibits discrimination against people with disabilities in everyday activities, such as buying an item at a store, going to the movies, enjoying a meal at a local restaurant, exercising at a health club, or having a car serviced at a local garage.
My mom once asked a friend why, if the ADA has existed since 1992, so much is 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 former roommate needs earplugs 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.
Moreover, 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 ensure that strangers understand why I fall over in public, why I use a wheelchair to grocery shop and why I need someone else's stool 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 moments to open a door for me or when someone in the supermarket takes an item down off the top shelf for me. I genuinely don't want to ask someone for their seat in a club, and I feel horrible asking friends to escort me to the bathroom in restaurants. I'm the only 29-year-old I know who needs assistance getting from point A to point B to guarantee that I don't wobble into a stranger, lose my balance and fall over or, most horrifying yet, injure myself in a hotel bathroom and rely on paramedics to extract me (yes, it's happened). Many times, when using my wheelchair, I 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, I follow the action or request with a guilty expression that boils down to a repetitive “I'm so sorry.”
My overuse of apologies once caused my roommate to unintentionally fling me on the floor of a restaurant. While helping me to cross the room, she moved abruptly to admonish my sixth consecutive utterance of “I'm sorry” for stepping on her heels. Because my balance rested on her shoulders (burdensomely, I was convinced), I ended up under the bar.
“Sorry,” according to the Oxford American Dictionary, denotes 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 MS 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 out the garbage 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. That easy capability, to me, after a mere 10 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 on whom I impose myself constantly. The unwavering love of those close to me doesn't lessen my guilt. I know my mom will still love me after she goes up and down the stairs for the fifteenth time to collect indispensable things that I've forgotten from my room, but I still feel awful.
I feel even worse when I startle strangers—when people who don't love me unconditionally have to get the Ben & Jerry's out of the freezer for me in the grocery store or when strange lifeguards 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 struggled with my slippery metal wheelchair in the rain, have pushed me out of puddles when I was stuck, and have pulled and pushed me up stairwells. I feel like those poor people will suffer at least some level of emotional trauma as a result of having seen my tear-stained face; their lives will forever be tainted by the strange girl who lost her balance and grabbed onto them in the Gap.
Someone once wrote 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 compensate for my self-professed burdensome nature.
I have thought about those 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 “silent” as synonymous with “quiet” (which I'm not). But “silent” also means “unvoiced” and “unspoken,” which, when it comes to things I need, I am. I'm far more likely to meekly ask for help than to demand that restaurants, gas stations and other public facilities be made accessible. As my ex-roommate summed up: “You make up a population of silent people because you already feel too damn guilty about asking for help.”
If the ADA's objective had been achieved (it was, after all, passed 15 years ago), I wonder, would I still need to be “the kind of person others want to help”? Would I need to apologize constantly 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 “sorry” for my roommates, continue to mourn my lack of usefulness in the kitchen and help myself in public.
I do constitute a silent minority right now—I am careful with my energy, and I'm particular about the battles I choose. I wonder, though, when this will change; when the ADA will offer more than lip service; when it will instead provide an entire population of people with disabilities the chance to stop feeling guilty all the time and to 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 what really needs to be said.