Handling ‘Help’


One cannot live without it. I am not a rock, not an island. My life is interconnected with dozens of others closely — and the rest of the world’s sentient beings — whenever I am out and about. Life without help is isolating, and helping hands grease the human experience, smoothing pathways, enabling, making all sorts of things possible that would not be otherwise.

Disabled people know this well, and gratitude is on our minds often when someone does the odd favor, gets us out of a jam, reaches that book on a high shelf. Help is handy, help is sublime, help is necessary.

Unless it is not desired.

And when it puts the grand spotlight of life squarely on your disability.

So this is the dicey part. I want to encourage altruism. I want it to flourish. It is an essential component of being human. Without it we descend into chaos and a brutal, self-centered way of life. But I am fond of my own sanity too, and the abbreviated but precious independence I have fiercely and relentlessly wrested from my post-accident life.

I am a male T8 paraplegic from a hit-and-run bicycle accident 25 years ago. I grew up in backwoods New England, where independence is as stoutly defended as anywhere in the world. In my town you dug your own post-holes, repaired your own roof, stayed frugal. Self-reliance was a religion, a way of life.

My, oh my — becoming disabled was a jolt.

I couldn’t even get into my own house any more. Could barely pull on my trousers. Couldn’t mow my lawn or fix my gutters. I managed to lose most of everything I had worked 35 years for — house, marriage, job, almost my children.

In those early years, avoiding unsolicited help was relatively easy. I could dash around in my ultra-light, my big newly muscled arms like tree trunks, while the wild, defiant air on my face kept people at bay. I was going to do things my way, thank you very much, and I gritted my teeth at the grocery when I had to ask someone to reach the pickles on the top shelf.

I have mellowed a bit, but it is a rare day when I leave the house and don’t have at least one unsolicited, unwanted, highly intrusive offer of help.

I suspect most of us recognize the usuals. Holding the door open (but standing in the way). Elevators. And now that my beard is gray, I am an old gray codger-in-a-wheelchair. I must need help all the time!

People can’t stop themselves.

I cannot pause on the street to blow my nose without someone coming over. Never mind dropping my keys, reaching in my backpack for a book, going up a hill!

It is a wonder I can do anything on my own, and there are days that Satan appears, sitting on my shoulder, ready to offer educational elbows to the ribs of the well-intentioned but clueless.

The wheelchair, as we all know, is a powerful, highly visible symbol. Evidence suggests it alters the consciousness of others. First, in nondisabled eyes, your IQ drops 20 points. Your age goes up 20 years. Your help quotient hits the ceiling. How could you possibly be in a wheelchair and not be grateful for any and every offer? And if you decline mine, you really can’t mean it — I will just step in and do the obvious anyway. Why you are snarling at me? These ungrateful cripples are so aggravating.

I work at a university with a hilly campus. Several times a week someone offers to push me up a hill on the way to the bus stop. I always politely decline, which works about 60 percent of the time, but the interaction often escalates.

“You sure?” they ask, worried that maybe I will clutch my throat and have a heart attack if I go another 10 feet. I cannot possibly be telling the truth.

“Fine, thanks,” I respond, accent on the second word.

And more times than I care to contemplate, the good Samaritan can’t stop himself and starts pushing me anyway.

“No!” I bellow. “Get your hands off me!” I have perfected a sudden wheeling move that gets them darting their shins out of harm’s way. “Don’t you ever touch a wheelchair user without asking first!”

They hold their hands up, as in “only trying to help. …” Drives me nuts.

*     *     *

In 2012 the San Francisco Giants baseball team won the World Series. At the victory parade, their top relief pitcher, Sergio Romo, a Mexican-American, wore a T-shirt that proclaimed “I only look illegal!” —highlighting the immigration debate. Maybe I need a shirt that says “I only look pathetic!” Or maybe if I fasten some gleaming scythe-like blades to my wheelchair wheels, a la Ben Hur in the chariot race scene, people will leave me alone.

Another aspect of unsolicited help is the attention brought on you. If you were going along, minding your own business, blending in with everyone else, acting as a regular human, your cover is now blown. The patronizing look down at you. Everyone else notices the interaction. Your wheelchair, previously invisible, or at least a secondary part of your human existence, is now Front Stage.

A couple of offers I have had over time stand out as exemplary, one just the other day. A 20-something female student said, “Looks like you have everything under control, but if you would like a push, I am happy to help you up the hill.”

Perfect. Polite. The request makes it clear that it would be my choice. It is respectful and lets me know the person will actually listen to me.

I am sure that there are lots of folks out there who do a lot better than I do with this help business. Like most disabled people, I have a lot of patience. Like a lot of disabled people, it is not an infinite store. My issue is staying civil, holding to my own ethical and moral code, without letting the idiots of the world ruin my sanity.
I would love to hear more about everyone’s coping strategies in the face of unwanted, unsolicited help. In the meantime, the following rules, designed mostly for wheelchair users but likely adaptable to those with other types of disabilities, might be handy to pass on to your loved ones or the large herd of yet-to-be-educated nondisabled types who witness your disabled traverse through life. Print it out. Put it on your refrigerator. Sing it!


First of all (and at the very least) — stay out of the way.
Often the best thing you can do for a wheelchair user is to just create a little more room. Wheelchairs need extra space to navigate. In tight quarters (crowded buses, elevators) making a little extra room, if you can do so without calling undue attention to the individual, is handy and minimizes the chances of your own toes getting run over, either inadvertently or otherwise. Many well-intentioned actions can actually make life harder by reducing available space.

When in doubt (which ought to be all the time) — ask first.
Wheelchair users value their independence, however much they have, and often dislike non-requested aid. By asking first, you preserve their dignity and their own control. If refused, please honor the request.

Please don’t help in order to satisfy your own needs.
If you are expecting thanks for every offer of help you make, please don’t bother. Most wheelchair users don’t want to be used to pad your precious merit badges of altruism.

If you cut in front of wheelchair users, at least be faster than they are.
Otherwise we cannot guarantee the health and safety of your heels/Achilles tendons.

Help that comes from a fellow human, directed to a fellow human, is the favored kind.
Most wheelchair users detest pity. If, however, you offer your help in a way suggesting that you view the recipient as a fully developed individual, perhaps dealing with some challenges in life, it makes it easier for the recipient to view you the same way. Better to be a help than an irritant. Many of us get treated like kids a lot of the time, and that,
paradoxically enough, gets old.

Unobtrusive help is golden.
Don’t make a big fuss (“macht nicht kein tsimmis” in Yiddish). Making a flourish out of holding a door only draws attention to whatever malady or weakness we might have. Quiet, polite civility, offered with a pure heart, helps the world go ‘round.

*I am well aware that the authentic oath from which this is derived does not include the inaccurate but oft-repeated phrase “first of all, do no harm,” but since it is so embedded in our understanding, I’m keeping it.


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Lori
Lori
8 years ago

I agree and have been dodging/ignoring/ and declining help for 14 years now. Sometimes when I’m tired I just accept it. Too tired to argue with the people. One day I was getting into my car after grocery shopping and a man (I’m a girl) Slammed on his brakes, jumped out of his car and ran over to my door (where I was breaking down my wheelchair) and took it right out of my hands. I practically fell onto the ground. I just gave him a look and said; “Now what do you plan to do? You stealing that?”

I politely explained that I was alone because I can handle my wheelchair without help and he shouldn’t touch other peoples things without asking. I was nice about it. He still however refused to let me do it alone. He absolutely made it more difficult for me but at that point I just wanted to get rid of him.

On an opposite note though, several times in a grocery store, women will come up to me and ask my advice about recipes. Almost makes me feel normal. Maybe some people are actually getting the message out there.

ThinkTherapy
8 years ago

I use a wheelchair, when you open the door and then stand in my way, your toes may get rolled over?

Ron
Ron
8 years ago

Ned:

I AGREE with everything you present!

I’m 77 and been pushing a manual since Janaury 1982. The only other thought I can offer is NOT to have push handles on the chair. I have had them on earlier chairs and had people give me a push when I didn’t know they were even behind me. That will get your juices flowing in a hurry. But, since I now order my chairs without an extension to use, that surprise has evaporated.

Thank you for discussing such an obvious matter (at least to the select few in chairs).

Ron