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.
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2 Comments
Add Comment26 February 2008
Reply | Report Abuse | Link to thisIn care of: Body (Scientific American)
www.sciam.com/Body
To: Kate Hooks
Ms. Hooks,
Thank you for writing A Silent Minority . We, currently able people, are going to be in your position somewhere, some way down the line. We need to become more aware of our world and the people within it.
It also takes courage, as a stranger, to ask: Do you need help? Ive been snarled and snapped at as well as glowered, but I still keep asking.
Martial arts is a whole heck of a lot more than walloping somebody. Its a study of the body and our mechanics. What I have learned, just in body mechanics, has enabled me to help someone into a car as well as safely getting them out be it post-surgery, post-stroke or in-between contractions.
Again, basic common sense and an awareness of who is around you and taking in a bit of whats happening. Id much rather have someone lean on me or ask me for my arm if they need it, thats what friends are for, as well as strangers who care.
Why?
Why not?
You are teaching the other person compassion. Awareness. Reality.
Ill never forget a woman standing in back of me while we were going up an escalator. The package I was carrying started to tilt me backward (it also was a skinny barely one person wide escalator), she pushed her hands into me hard enough we got to the top in good shape. It would have been a mess of a lot of bodies otherwise!
Today, I have knees that like to buckle. Ive yet to take a full fall, but that may happen. Yes, Im going to a doctor and using Ace wraps, but I also have to watch how much lifting Im doing and how much energy Im expending also.
A male friend had to teach me to ask if I needed help. He caught me climbing on top of the counter to reach a high cupboard, nearly gave him heart failure. Well, my scrambling days are pretty much over. Im on the short end of life and yes, I do use humor, when I ask a tall gentleman: Excuse me, Im vertically challenged, would you get that package up yonder? The humor I find nudges them out of their world and into mine. Who knows, next time they may ask a short person if they need something off the to shelf!
Excuse me and thank you. Accept what is and go forward. Forget the word sorry . Im just a short person. One day I may wind up falling over and talking to the bunny rabbits out in our parking lot where I work. Well, I guess thats part of getting older.
Emotional trauma . I tend to think a person who would be emotionally traumatized doesnt even try, they just scoot out of site. People who want to help, help.
Thats a good question though: the kind of person that others want to help. I think the word approachable is close. This afternoon there was a gentleman on crutches, he was an above the knee amputee. He zipped into the market and went for the automatic scooters. They had jammed them a bit close. Can you get in there? I asked. Yes, thank you! Just a basic one on one communication, no humor needed.
Communication. I think its the other person that should be remorseful about not opening a door whether you are in a wheelchair, have a baby and packages in arm, whatever.
Look at what you have done in your life, you are a teacher and a writer. Yes, MS is a part of your life, but its not you.
Is there a way to turn this around, make people aware and how they can be of help, effectively? Intelligently?
Yes, Im aware that Ted Bundy used the cast trick. Yet, Ive stopped to help a man trudging into a bad area because I saw his car at the side of the highway. Before I opened the door I told him I worked security and was armed (not 100% true), if he wanted a ride he had to place the can between his feet and sit on his hands after buckling in. It was a tense ride, but we got the gas and I got him back to the car. As I told him, just do somebody else a favor and thats payment enough.
At 59+ cant say Im a warm and fuzzy kind of person. When Im in pain, I can be a real bear. Ive been blessed by many people in my life who are not put off if I growl, they ask if Ive eaten or checked the blood sugar lately. Oops. One friend noticed I was rubbing my knees while I sat on the floor watching a movie with her. She got up and got a back of peas and said try that . Duh! The things I forget. Its a system of checks and balances.
Those that can, do. Those that cant, well they will figure it out somewhere down the road in their life.
Thank you for being in this world, for making people aware and writing out against the silence. The gestalt of being human embraces many events and challenges from which we must grow or get rusted into a one dimensional world.
Best to you in the future,
Anne
Dear Kate,
Reply | Report Abuse | Link to thisNone of us is an island; we all need one another. That being said, some of us need more help at times, and we need to accept that this is true. Believe me, I was the one that would be the helper-outer, so when I injured my back and became the one who needed help, it was hard. Just know that as a general rule, people want to help. If you do something that someone might find objectionable, like bumping into someone, it is perfectly appropriate to apologize. However, if you are asking for assistance, don't apologize. If you smile sweetly and say "please", that will do the trick. My best friend has cerebral palsy, and she has the balance down to a science. I wish you the very best of everything,