The Code of Help

I was about to walk down the stairs when the man grasped my arm at the elbow, and asked a second later, “can I help you?” It was late evening, and I had just stepped off the train, having chosen my boarding location strategically to be able to execute a quick U-turn to the stairs upon exiting the train. It wasn’t too crowded, and I was lost in thought. I’m a thirty year-old female commuter, and I take this route every day. So why was this stranger obstructing my path?

 

There was a long white cane in my right hand. I am totally blind, and My cane is a travel tool, a hollow tapered tube of fiber glass with a small steel disc at the end. I use it to get tactile and auditory feedback about my environment. But in this moment, it became a lightning rod for the social code of help that trips me up far more often than any physical obstacle in my environment ever does.

 

I’m not a mind reader, but based on the actions of those around me, the social code of help seems to go something like this: “I see a blind person, they must need help. If I help them, I am doing a good thing.” I doubt it’s a coherent stream of thoughts, rather, it’s as deeply engrained as “The light is green, I can cross the street,” because it happens so spontaneously, and so often. Sometimes the help is physical, I am abruptly taken by the arm or shoulder and propelled, in or out of train doors, toward an escalator, across a street. Sometimes it is verbal, “the light is green,” “There’s a seat over there,” “keep going straight.”

 

“Erin,” you might be asking, “what is your problem with all these helpful people who just want to make sure you are safe?” Let’s deconstruct the social code of help to see why help isn’t always helpful.

 

First, the code starts with the fact that I’m a blind person. Now I know my blindness is noticeable. I’m using the aforementioned 5 foot long cane, and navigating the world using nonvisual techniques. My phone chatters in a robot voice, I might stop in the entry of the Starbucks to listen for the end of the line, I might be reading the dusty Braille sign on the train platform to confirm that I’m where I want to be. If those details get noticed before my awesome thrift store dress or the fact that I ride your commuter train every day, so be it.

 

Next, the assumption that because I’m blind, I need help. Here’s where things start to get tangled, because in fact, I don’t always need help. Most often, I definitively do not need help any more than those offering it do. I use my cane to find stairs and obstacles, I use traffic flow to decide when to cross the street. But more important than the hows and whys of my techniques, is the fact that I am a competent adult who assesses risk and asks for assistance when I need it. I was not on the verge of falling down the stairs when the man grabbed my arm. What if every time you left your house, the majority of the interactions you had indicated that people were assuming your incompetence? A stranger flags you down, hops in your car, and starts driving to your destination for you. Are you grateful?

 

The final part of the code, that help is a good deed, further serves to muddle the interactions. I often find myself trying to reassure the stranger of my competence. “I’ve got it,” “I’m good,” I know where I am.” If there’s physical contact involved, my defensive reaction to being a woman being unexpectedly grabbed is in play. I shouldn’t have to quash these self-protective instincts, but I also don’t want massive jolts of adrenaline multiple times a day. Often, I mix a physically defensive response, an abrupt stop and jerking away of my arm, with a polite verbal response, a smile and a “No thank you.” If my reaction isn’t sufficiently sugar coated, “I was just trying to help,” the stranger will respond, his or her confusion at my violation of the code evident. These moments leave me feeling dishearten, and they probably leave the stranger feeling confused, offended, or disappointed. If I’m not in the mood for conflict, my other choice is to accept the touch of strange hands on my body, just smile and say thanks. When I take this route, I can only describe the after taste as the flavor of eroding dignity.

 

The code of help is only a small part of a larger social construct about disability. Systemic change is a long and uphill battle. If you’re reading this post, and you are a nondisabled person, I invite you to institute some small changes in your practice of the code of help.

  • Assume competence. Always remember that you’re having an interaction with another adult who has been going about their day without your assistance until this moment.
  • Ask before you act. If you do feel like help might be warranted, and it may be, because preferences and abilities are as unique as the individuals who have them, start with a verbal offer. A gracious offer gives far more room for a gracious acceptance or decline than forced help does.
  • Personal space rules apply. You probably wouldn’t reach out and grab just anyone, so avoid doing so to people with disabilities.

 

Over the coming weeks, I’ll be undertaking a conscious effort to find new and better responses to moments when I find myself tripped up by the code of help. I invite you to share your own experiences in the comments.

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22 comments

  1. CanadianAspie

    I’m not blind, but I have an as-of-yet undiagnosed physical disability. It’s definitely some kind of connective tissue problem, and it causes my joints to be… annoying and easily displaced. I fall a lot, particularly on moving buses because I’m “too young to need a seat” and people don’t always get up/drivers don’t always wait for me to get to a seat. My biggest “help” related problem is people grabbing me to help me up without asking and then getting mad when I don’t appreciate them pulling my arm out of its socket. I don’t like being touched by strangers in general, and I especially don’t like feeling like I have to thank people for injuring me just because they were trying to help. The best thing people can do to help, if they feel they really need to, is ask if we need it, and listen to our responses.

    • migrainesonparade

      I have invisible disabilities, and usually need to sit on buses, if there are no seats available I tell the driver I’m disabled, need to sit and they will ask someone to move, often during that interaction someone hears me asking the driver and offers to move. I used to ask passengers to let me sit, and that sometimes didn’t go over well, because I’m young and look healthy, so I started asking the driver and that always worked for me.

      • CanadianAspie

        Unfortunately, for me, the bus drivers are part of the problem, even now that my (physical) disability is more visible (I walk with two canes). They don’t believe that I need the seats, or the time to get to a seat, because I’m young, and I’m frequently kicked out of the seating to make room for strollers. On the plus side, I don’t usually have trouble getting a seat after I fall.

  2. Kim

    Hi Erin,

    so great to have found your blog; you express my own thoughts and frustrations here exactly. I often tend to get quite defensive when someone wants to “Help” me, particularly if they grab me first or try propelling me a few steps before asking. Stay out of my personal space, please. Unless I explicitly ask for your assistance, I don’t need or want it, thank you! I can empathize about needing / desiring better ways to respond while keeping my dignity in tact. I’m a 31-year-old totally blind competent female. When I need your help, I’ll ask. *smile*

    I’ll be back to visit soon, Erin. Keep up the great work.

    Warmest,
    Kim

  3. Leslie Ligon

    Thanks very much for your clear, concise blog entry.Our older son is blind, and we have several adult friends who are blind, or low-vision, so I know second-hand of what you spek. (I also took the o&m certification course, so have been under blindfold [with a not-really-great-teacher!])

    Our son is by easy going, but well be working on Hines break, and assertiveness for the next couple of summers, before he takes off on his own in college. I will also share this with him, and post it to my At First Sight braille jewelry Facebook page.

    I applaud your having addressed this issue with measure and intent!

  4. Glinda Davis

    Erin, thank you for enlightening me to the fact that my caring for another person as being a rude gesture on my part. I have never helped a stranger out of pity. Only out of love for another humane. I cannot promise I will stop helping because it just comes natural for me, but I will try to remember that my help could possibly cause mental or physical pain. That possibility breaks my heart for no pain at any time was meant to be inflicted. Now I must go and thank my friend for posting this on face book. May you always have a blessed day. Sincerely Ellen Davis

      • Glinda Davis

        Hi CanadianAspie, thanks for your comment. I always do ask if help is needed. I should have been specific…I jump to action when seeing someone fall or turned around deranged and not think before touching a stranger.

    • Taryn

      Unfortunately, it is the people who jump to action when I fall that cause me the most harm. Just something to be conscious of, I know it’s instinctive and that it feels like the right thing to do, but it’s really important to pause and ask before you touch someone. When I fall, I’m usually frustrated about it, disoriented from the fall and preoccupied with making sure I can stand up safely and that I’m not bleeding. On top of that, there’s often people rushing over to help me, asking if I’m okay and sometimes there is a bus driver hovering over me trying to convince me that it was my fault, sometimes screaming at me. The last thing I want in that situation is to have a well-meaning stranger unexpectedly pull my arm out of it’s socket.
      This isn’t meant as a criticism, but please please please try to ask before you touch someone to help them and please listen and don’t get offended if they ask you not to help.’

  5. Chris Swank

    There are a couple of things that seem to make this whole help thing so sensitive and complicated. One is, of course, the itchy-scratchy factor of good intentions. I think some folks use meaning well as a sort of get-out-of-jail-free card. Next is, at least from my observation as a guy whose been blind all his life, sighted people like to play what-if games in their head instead of trying to scope out the situation right in front of them. So their brains are occupied with fantasies about going completely blind one day and how scared and helpless they’d feel. So then they take these hypothetical feelings and slap them on you, the blind person who learned skills and can cope with living life as a blind person.
    Getting back to intentions, too, sometimes a help situation is not about you personally. The person may want to help you for purely selfish reasons and your need for help or lack thereof is irrelevant, it is their need to help you which is important and by golly, if you know what’s good for you you’d better play along or else you’ll be told you’re ungrateful, although why one should be grateful for something they never asked for or did not desire at all is anybody’s guess. Am I making any sense here?

  6. Jen

    Great post. I have low vision and use a white cane and can very much relate to this. Especially the part where you said, “What if every time you left your house, the majority of the interactions you had indicated that people were assuming your incompetence.” And you are right, for many people it’s completely automatic, and not right to get angry at them about. Sometimes, I wonder how people think I got to the curb of a downtown intersection in the first place, when they seem so concerned about my inability to cross the street. I think this “blindness equals helplessness” mindset is a deeply-rooted societal perception that needs to be changed. What’s more, often when I turn down help (such as an offer of a seat on the train) people either don’t listen, or they ask me repeatedly if I’m SURE I don’t need help. As if I’m not even competent enough to determine whether I need help. I certainly am grateful for help on the occasions I do need it, it’s just that those occasions are few and far between, not every step of my journey as many seem to assume. And usually (although not always), if I need help I’ll ask for it, rather than needing someone to approach me to ask.

  7. Alexander Castillo

    I also have similar stories as the ones above. However, I don’t think these strange interactions are mostly about society’s prejudices and stereotypes. I think it has allot to do with how we process information as we observe each other. I’ve replied in full to the questions of why able bodied people behave in this way on on my blog at http://waysofthecane.blogspot.com/2013/10/strangers-among-us-wwhy-able-bodied.html

    This is a great post and it has quite a number of people thinking.

  8. mathieu delarue

    Hi Erin, I have read your blog entries, and many of the comments posted, with considerable interest. I have a little different perspective on these issues, and would like to get some suggestions on how best to deal with them. I have had significant visual impairment for about a year now, but am not totally blind. I apparently don’t look blind (whatever that means), but I come across as clumsy in public, bumping into things, and knocking things over, on occasion. I set a wine glass on someone’s plate at a recent social gathering, for instance (the person had moved it). I always apologize, and mumble something about not being able to see well, but it nonetheless creates awkward situations, and I resent being chided for it. Any suggestions on how best to deal with this? Thanks.

    • Erin

      Hi Mathieu, As my blindness is congenital, I am probably less able to speak to the adjustment you are experiencing than someone else who has been there, but a couple of thoughts. You might consider carrying a white cane, both to get tactile information you might be missing visually, and to clue others in that you are visually impaired. Also, there are nonvisual techniques you can learn, either from professionals or just from hanging out with other blind people and asking how they do things. There will always be awkward moments, but if you feel comfortable with your visual impairment, you’ll feel more comfortable explaining it to those around you when the awkward moments happen. I don’t mean to sound trite, it’s not a small thing, but it can become an easier thing. Let me know if I can provide any more specific info, or if you want to dialogue more about your experience.

      • mathieu

        Hi Erin, thank you for the thoughtful advice. I do need to consider using a cane, as I stumble and trip over things on a daily basis. I am not quite sure why I have been reluctant to do this, but it seems to be quite a transition. Part of it, I think, is that I am in a work environment that is not very VI friendly. To give you an idea what I mean: I have been desperately trying to learn braille; I am not terribly proficient at it, but I can read basic things in grade one format, and I am getting better. I made an outline for a presentation I had to do; when I enquired about printing it, I found out that the university where I am employed does not own a braille printer, nor would they purchase one willingly. I know that going through legal channels, I could probably force them to provide one, but this would meet with a lot of resistance. A year ago, shortly after experiencing vision loss, I requisitioned JAWS, in order to do my job. After a couple of months of their foot dragging, I charged it on my credit card. It took 8 months to be reimbursed. I am not an abrasive or confrontational given person, but I stated clearly, firmly, and repeatedly what I needed, in writing, only to have my requests be given the lowest of priorities. Sorry for the rant, but do you have any suggestions for how to deal with such recalcitrant people?

  9. Betsy Brint

    I am the mother of a 16 year old son who is blind. Last year, I watched something that absolutely frightened me to my core and made my blood boil at the same time. As my son walked home from school, he made a mistake and instead of walking on the sidewalk next to a busy busy road, he walked on the busy road thinking he was on the sidewalk. Granted he was hugging the curb, but he was actually in the street. Now, he has fairly good cane skills… usually. But on this day, he was, (as many teenagers do) daydreaming a bit and not paying the kind of attention he should have been to his surroundings. I happened to be driving by, and I saw, to my horror, that car after speedy car, zipped by my son as he ambled in the street with his cane and backpack. I was grateful no one actually ran him over, but furious that no one stopped to help. Am I wrong to assume that strangers should help out when they see a person who is blind doing something that is clearly dangerous? Please tell me it is OK to offer assistance in such cases… please.
    – Betsy Brint… the frantic mother

    • Erin

      Betsy, props to you for being a brave and thoughtful mother who lets her son learn to be independent, even when scary mistakes are involved, and thinks about the hard stuff.
      My short answer is yes, if there is actual danger, people should help, or at least check in, but this doesn’t have to be blindness specific. Someone should have pulled over and checked in with any kid daydreaming in traffic, regardless of the cane.
      I’ve had moments like the one you describe, and my favorite response to my mistake is matter of fact and informational. “You’re in the street, the sidewalk is to your left,” lets me fix my mistake quickly.
      The problem is that people who aren’t familiar with blindness sometimes assign danger where there isn’t any, or don’t have the framework to understand what a typical blind travel mistake can involve. A recent moment I really liked was this:
      I was running down an empty bus lane, because it was the clearest path to my destination, and I was in a hurry.
      A man started jogging next to me and asked, “Do you know you are in the street?”
      “yes,” I replied without slowing, “there are no poles in the street.”
      He understood, and let me go on my way. I liked that he checked in, but did so without actually interfering with my autonomy.
      Thanks again for reading and commenting!

  10. SixString67

    Absolutely some of the best discourse on this subject that unfortunately most of the world needs to know about and unfortunately will mis knowing about.

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