Sometimes you need a little help, sometimes you’re tired

In my regular presentations and discussions about disability awareness to college students, I am often asked about the best ways to help a person with a disability or to ask if we need help.  Occasionally, parents are looking for ways to help their children talk to other children or adults with disabilities.  I usually tell students that a good rule of thumb is to allow the person with a disability to ask for help if it is needed, because we usually know when, what kind, and how much help we need.  We are also better equipped to direct the helper on how best to assist us.  I then explain that generally well-meaning nondisabled individuals tend to help when it is not needed, in ways that are not at all helpful or harmful at worst.  There are certainly all kinds of issues of power, infantilization of the disabled person, stigma and stereotypes, and a whole host of more issues involved in these sorts of exchanges, but that discussion is longer than a single blog post.

We, as people with disabilities, are able to do all sorts of things for ourselves, and when we cannot, depending on where we are in our journey in life, we are capable of asking for help and knowing what we need.  Then there are the other times, the times when we may need something from someone else but may not know exactly what, when, or how to best accomplish a given task.  Then there are other times when we are just plain old tired.  I’m sort of in that part of my journey these days.  I know I need help, sometimes more and sometimes less, but sometimes I get tired of asking.  Or I’m feeling shy.

I decided yesterday afternoon that I wanted sushi for dinner.  I’d been craving it for a while, and although I’m Irish and it was St. Patrick’s Day, I really wanted sushi.  So, I got in my van and drove up to my handy dandy neighborhood Publix grocery store.  It’s not the best sushi in the world, but it’s fast and easy and works for me in a pinch.  As I rolled into the store, I went over to the sushi display and had a Pavlovian response to the beautiful and colorful choices that awaited me.  I quickly saw what I wanted, but I knew I couldn’t reach it, and I really couldn’t reach the chopsticks and soy sauce.  The store was busy, and the sushi display is up at the front of the store where shoppers hurriedly enter and exit.  I glanced around sheepishly, waiting for the right person to ask to grab my dinner treat.  I hesitated.  At best I am not a crowd person, at worst I’m a tad claustrophobic; wheelchair life will do this to you, always being so aware of your body and other people’s bodies moving through space.  I am usually more than ready to ask for assistance, but I’m tired and there are people whizzing back and forth all around me.  Finally, a woman approaches and asks, “Can I help you get something?”  I replied in my smiling voice, “Yes, that would be wonderful,” and told her my selection and then asked if she could also get chopsticks and soy sauce.  She grabbed two pairs of chopsticks and several packets of soy sauce (I’m pretty sure she was a mom, thus understood that more is more – and better).  She even checked the “sell by” date for me (I’d already seen it, but you never know).

The whole help thing is very individualized, unique.  I rarely encounter someone attempting to help me in a way that is harmful or not what I actually need, but I am well aware that my experience is not the mainstream experience.  And I’m usually very good at asking for help, and if something will not work the way that someone else is asking to do it, I’m pretty good at explaining why not so that the individual does not think I am just being mean.  People want to understand and make sense of things, and I get that.  (People do try to tell me I can do things I cannot, or at least assume I can do them, but again, that’s another blog post.)

The woman who helped me yesterday did so in a way that worked for both of us.  She asked politely and I accepted and gave clear direction and thanked her.  This is not really a new, different, or exceptional instance.  But it bears witness to the people who want to help but who are afraid to say the wrong thing, get involved in a situation they cannot handle, or simply just don’t know what to do.  And it bears witness to those of us with disabilities who have our own lives outside of the public persona we feel we must present or feel burdensome by asking for help on a regular basis.  It’s a difficult dance for all involved.  I have recently been feeling overwhelmed by my life lived with disability.  Actually, overwhelmed is putting it rather mildly.  Lately, I feel like my life is consumed by the stuff of disability and there is little room for anything else.  Part of that is my own doing because I have chosen to make disability my work.  The other part of it is just reality, and contrary to the proliferation of “reality” TV that makes “reality” seem entertaining, real reality is pretty hard stuff.  Disability multiplies that to some power I’m not even sure we can count, so I’ll go with my usual saying, the nth degree (reach far back in your minds to high school algebra!).  I’m tired, folks.  I’m tired of talking about the ins and outs of my body and my needs with people, over and over again because everyone needs to hear it, from the big stuff to the mundane.  I’m tired of my body and needs taking center stage.  I’m tired of explaining to people, new and old.  I’m tired of feeling like the different one.  I’m tired of feeling tired and tired of worrying about it all.  It’s strange to feel this way and be so young.  Who knew 31 years could feel like such a long time?  But when you’re in your 21st year of disability but only your 32nd year of life, I imagine that’s what you get.  The lady who helped me yesterday did more than reach some sushi, soy sauce, and chopsticks for me; she gave me a tiny break from making the first move, from being on display.  Sometimes we just want to grab what we came for and be on our way.  Sometimes we just want to be, not the supercrip, not angry or sad, not fighting “the man” or explaining to others or defending ourselves, we just want to be.

So that’s where I am.  Just trying to get through each day without tipping the scale past the tired breaking point into oblivion and evil.  Trying to find my way back to thriving amidst the survival and being real with disability.  Trying to find the balance among those three things.  I’m starting to learn that sometimes two out of three ain’t bad.

In other news, I have a few recommendations.  My friend and author extraordinaire, Alida Brill, has a new blog called From This Terrace.  She has been chronicling her observations and musings from her New York City apartment since the beginning of the year and does a weekly installment.  I reviewed Alida’s book, Dancing at the River’s Edge, last year. Be sure to check out this amazing book about her life lived with chronic illness and be sure to keep up with From This Terrace at the blog and via its Facebook page and Twitter page!

Another friend and author extraordinaire, Rachel Simon, has a new novel, The Story of Beautiful Girl, being released May 4th – be sure to pre-order your copy via the link!  She has had fantastic success thus far before most people have even gotten to read it, with her publisher sending her on an exciting pre-sale tour.  She has been blogging about this wonderful experience, and it has been so much fun to get this inside look at the publishing world.  Rachel and her books have already done wonderful things for the disability community and I know this book will do even more.  Also, be sure to read my interview with Rachel about her second memoir, The House on Teacher’s Lane, here.

10 Comment(s)

  1. Laura – I love this post, and not because you mention me in it (though I’m very grateful for the shout-out!). I think you address a really key issue that comes up in everyone’s life. If you don’t have a disability, when and how do you offer assistance? If you do, when and how do you ask, esp. if your spirits are down and you’re feeling overwhelmed? The anecdote you provided from yesterday is a beautiful picture of how it can work well on both sides, and it provides insights that everyone can find useful. I was sorry to hear about your spirits at this moment (which you also mentioned in your last email to me) but I was glad that you shared them here, and how this moment helped in a small but meaningful way. Take good care, dear Laura. (And I am now following Alida thanks to you!)

    Rachel Simon | Mar 18, 2011 | Reply

  2. Thank you, Rachel! I think, and keep reminding myself, that the little things really make such a big difference. Thank you for your support, and I’m so excited that you and Alida are making a connection.

    Laura | Mar 18, 2011 | Reply

  3. Thanks for this post, Laura. As a non-disabled person with two disabled friends, my understanding of the nuances related to the help dance come from journeying beside them. Both have Muscular Dystrophy. One is a wheelchair user, diagnosed at 11, now 51. She didn’t start out using a wheelchair but now is. Her muscles don’t work the way they once did. Sometimes she needs help.

    We were at Publix in the produce section. I went one aisle over to get something while she perused the bananas. The ones she wanted were just beyond reach as her arm went out grasping only air. An awkward movement at best, but a man nearby saw her struggle. He approached, but his help fell more in the humiliation category.

    I was walking toward her as the scene unfolded. The helpful man assumed my friend would have trouble understanding him, that maybe she had some cognitive disabilities. Perhaps it was the wheelchair matched with the awkward movement and her now changed body, but he began yelling at her, “CAN I HELP YOU? DO YOU NEED HELP?” as if she were deaf too.

    To my horror, my friend sheepishly shook her head yes and allowed this man to help her. What?!? She has two Master’s degrees from Princeton and is an accomplished therapist, but she was reduced to this? I asked why she let him speak to her like that. She said she was tired. In that moment, that was what seemed best.

    The courage you each show as you work to live without making disability the point of your life is amazing. None of us non-disabled will ever really know the hard reality you face daily, but we can cheer when you tell us that for today you hit two out of three. Not bad, not bad at all!

    Debbie | Mar 21, 2011 | Reply

  4. Debbie, thank you for your comment. There are so many stories like this! Thank you for sharing yours.

    You’ll notice that I edited your comment a bit to reflect more inclusive disability language. I have just put up a new page on the site today with a comments policy that will hopefully help folks in the future.

    Laura | Mar 23, 2011 | Reply

  5. Laura, thank you once again for writing about my feelings without actually knowing me. This has happened to me a few times in my life and each time I first come across the book, song or in this case blog post that seems to have read my mind I think how did they know? And then I’m left with the feeling that I’m not alone after all.
    I can tell you after living with my disability for 25 years and not knowing anything else that sometimes even I get sick of being the center of attention. Some people would think the opposite. That after 25 years with cerebral palsy I would be used to it by now. But there are days I just want to fade in instead of stick out. I am forever grateful to my friends and family members that have helped me come to terms with myself. One moment in particular sticks out in my mind. I was having lunch with the guy that would eventually become my best friend. We were in the college’s cafeteria and I was having chicken. I needed a knife and fork to cut it up but I can’t do that independently. I asked him to get me the utensils and stared at the chicken and back at him for a few moments debating what to do. I was hungry but didn’t want didn’t want to look helpless in front of a new friend. My hunger won out and I said, “Can you help me?” He did and that solidified our friendship. Now all it takes is a, “Dude, be helpful.” And he knows what to do. I will always be grateful to him for seeing beyond my chair even when I can’t.

    Margie | Mar 26, 2011 | Reply

  6. Margie, that’s what I love about the internet, music, and books! There is always someone else with whom we can connect in some way! I will admit here publicly that I am not good at the asking folks to cut my food thing. I tend to order items that I can manage independently for the most part, but I do forget sometimes and have gotten less shy about it as time has gone by. Those folks who get us are the best! They rock!

    Laura | Mar 26, 2011 | Reply

  7. Your editorial assistance is much appreciated, and the insight offered on the Comments Policy page most excellent! Thank you.

    With some decades of life now lived, I’ve watched a few shifts and changes unfold, like the perceptions around civil & human rights along with rights given to people with disabilities. Your words on the comments page – “In most minority cultures, identity is at least in some small way, bound up with language” – are so true. And a part of me wishes it wasn’t so.

    Why can’t people just be whoever they are and that be enough? Like Margie commented, her friend sees beyond her chair. There is great intrinsic worth within each individual regardless of the language society uses to identify them. My path is about looking into your eyes and honoring who I see there. Period. It matters not whether you are a wheelchair user or part of some other minority culture.

    To be “bound up with language” is perhaps our greatest disability of all. And yet…maybe the freedom to just be rests within that same language. But tonight I’m tired too, so I’ll sit with that thought another day and see where it leads.

    Debbie | Mar 27, 2011 | Reply

  8. Well, language and identity are bound together for many, many reasons. There are some who say that just because we change the way people use language to refer to one group or another does not mean we are changing attitudes. To some degree, I also agree with them. However, I also believe that we should not stop trying to create awareness through language and identity politics. If we don’t talk about it, what change occurs then? Not much. Or at least it occurs at a far slower rate. If we use words that impart images and stereotypes of suffering or confinement, then we are just perpetuating the dominant view that people with disabilities are not capable or worthy or competent to be an integral part of society.

    The other side of that coin is the disability first language, which uses disability in an identity politics manner to show that people are disabled by society’s lack of accessibility and accommodation of all abilities. I’m not sure that the U.S. rugged individualist mindset is ready for that kind political language, at least not in the mainstream (which is where any movement must reach to create real awareness and therefore real change).

    So, while it is not the only answer, I feel that language is part of the answer, part of the recipe for change, even if it is a gradual and sometimes exhausting process.

    All of this gets to your point of “why can’t people just be whoever they are that be enough?” Agreed, but it’s not reality because society is not set up for it. If I could be myself without having to explain and educate others on my needs and feelings, that would be fantastic (because sometimes that would be MUCH easier), but we have a long way to go before we can just be ourselves and call it a day. However, that IS the goal! Keep thinking, talking, reading, questioning, and being a good friend to your pals with disabilities, and it brings us that much closer to reaching the goal.

    Laura | Mar 28, 2011 | Reply

  9. I come to this almost a year after it was written and I am saddened that I hadn’t read it before. Thank you for articulating my struggle so well! :-)

    I have MS. My biggest challenge is fatigue and I use a wheelchair for long distances and long days. What this means is that most people see me walking with a cane, but otherwise apparently doing just fine. I have become so accomplished at ‘putting on a good front’ that people don’t realize I need help sometimes and I have yet to let go of my issues with asking for help.

    Today, I am tired too. I am tired of asking the same people for the same help and having to explain why I need it over and over. So, I’m going to do as I usually do, retreat for a while and rest. Tomorrow I may have more strength to face the frustrations.

    Your post (and blog in general) is just what I needed. I am not alone and it’s OK. Thanks!

    Shirley | Jan 16, 2012 | Reply

  10. Shirley, welcome! I am glad to have you here at whatever time you find me and my little corner of the internet.

    This is a common struggle. You are not alone and it is okay. Remember that. We all get tired of asking and explaining and fighting the issues we have with asking for help. Hang in there and rest well.

    Laura | Jan 16, 2012 | Reply

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