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.