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.g

This article was originally published with the title A Silent Minority.

2 Comments

1. 1. Anne U. 08:26 AM 2/26/08

   26 February 2008
   
   In 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

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2. 2. sd_gal 11:11 PM 9/21/09

   Dear Kate,
   
   None 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,

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