Difficulty is not a welcome concept in our culture.
Everything is supposed to be easy. We have commercials that promise us a life of comfort. All we have to do is buy the right recliner, drive the right car, follow the right weight-loss program, or purchase the right labor-saving devices. The most valued people in our culture are young and able-bodied because, let’s face it, life only gets more difficult with age or disability.
The difficulties are physical as well as social. As much as I value who I am, I am not one to say that my disabilities are physically easy; add in the constant necessity of self-advocacy and the frequent experience of exclusion, and I’ve got a life that doesn’t come close to the ideal of ease and comfort that every advertisement tries to sell me.
It’s becoming clear to me that a great deal of our culture is based is the lie that life is supposed to be easy. And I’m coming to feel that this lie, in itself, is responsible for a great deal of the struggles that we face as disabled people.
While I’ve had the unbelievable privileges that come with being white, American, middle class, and educated, I’ve also had my share of hard times. For most of my life, I’ve gotten through the hard times by thinking, “Well, next year (or when I graduate/get married/have a baby/buy a house), life will be easier.” Sometimes, it has gotten easier (before it’s gotten harder again), but lately, life just feels plain difficult. My hearing condition take a lot of energy, a lot of discipline, and a lot of work. It is what it is. There is no changing it. At some point, I might grow so accustomed to my disability that it feels easier to carry, but I’ve stopped setting my sights on that mythic day. It might come, and it might not. Who knows? At this point, I have to stay with what is. I am much more in the present moment than I have ever been, simply doing the work that needs to be done.
But sometimes, I still catch myself thinking, “What the hell happened? Life is supposed to be easier.” And trust me when I say that thoughts of how life is supposed to be make the life one is actually living so much more difficult. The dissonance between the ideal and the real is both draining and painful.
And so, of late, I’m coming to accept that life is difficult. I think it’s difficult for most people on the planet. In the rich countries, we get desensitized to this fact—partly because we’re promised a “happily ever after,” and partly because a lot of people in the rich countries actually have it pretty good a great deal of the time. So, because many folks don’t see the kinds of lives that most people live, they become unfamiliar with the idea that life is full of harsh and painful things. And when they come up against those harsh and painful things in their own lives, they panic, because nothing has prepared them for the inevitable storm.
I’ve come to feel that one of the primary reasons that disabled people are so ostracized and excluded in our society is that we remind everyone that life is a messy, fragile, difficult thing. Our very existence flies in the face of the myth that, with the right combination of hard work, positive thinking, willpower, and possessions, life becomes what it’s “supposed” to be: safe, easy, and fair. Our interruption of the cultural myth is one of the reasons that all disabled people, at one time or another, have the experience of feeling invisible, even when in plain sight. It also explains why our attempts at inclusion are met with everything from good intentions that miss the mark to the mind-boggling experience of outright hostility.
If you weren’t born with a disability, but you live long enough, aging is sure to take you out of the camp of the typically able-bodied. Dealing with that change, at an advanced age, can be very hard. For the past few years, my husband has been going down to New York City, on a regular basis, to visit and care for his dad. At 94, his dad is fortunate to be able to live in his own apartment but, as the years have gone by, he has lost more and more of his ability to do the things he’s always done. These days, he is physically very frail and requires a great deal of assistance. Every time Bob visits, he hears his father’s constant refrain: “I’ve lived a charmed life. It wasn’t supposed to end up this way.”
And I hear him. I really do. Despite all the work I’ve done, I’ve heard those words coming from deep inside me, too. In these past several years, I’ve said to myself many times: “This is not how things are supposed to be.” So many of us are unprepared for the harsh realities.
In many ways, I’m lucky to be struggling with these realities at 52. It would be much harder to face them, for the first time in my life, in my 90s. I’m fortunate to be learning that, while it’s a long road from pursuing ease to grappling with difficulty, it’s also a long road from life being difficult to things being impossible. There is a pervasive tendency in our culture to elide the two, as though any difficulty is simply out of the question. From this confusion of the difficult with the impossible comes the trope of the “inspiring cripple” (and its counterpart, the “inspiring caretaker”). It’s as though typical people look at us and think, “Oh, you are so inspiring! If that were me, I would find it impossible!”
Sometimes, when I run across this kind of thinking, I just want to shout, “No, no, no! As long as we’re alive, difficult is not the same as impossible!” The two may look like the same thing to an outside observer, the two may even feel like the same thing in most people’s experience, but they are not the same thing. At all.
We learn to adapt. I’ve adapted quite well and found a number of creative ways to work around my difficulties. I can’t say that I’ve adapted to being treated in all the ways that disabled people are treated in this culture, but give me time. I’m working on it.
© 2011 by Rachel Cohen-Rottenberg
Great post Rachel, at the risk of sounding flippant, as the saying goes ‘life wasn’t meant to be easy’. People, as you point out who live in affluent countries with all the opporunity in the world still stuggle with illness, unemployment, addiction, over consumption, anger, jealousy, heartbreak, and the pain of aging. Often without any external obstacles a person can still get in their own way creating havoc and unecessary difficulties. This assumption that life should be easy tends, in my observation, to make people reliant on systems, laws, governments, and the good intentions of others, and when those systems or people do not fulfil their often grandiose expectations the outrage and disappointment is palpable. Or others become overly cynical. Which I suspect is a protective mechanism against the fact that life can be cruel. And as you say it also means they often cannot stomach being faced with the suffering of others.
I agree with you that if you anticipate difficulty by understanding it is simply part of life you can usually negotiate it with a bit more grace.
What you say about grandiose expectations leading to outrage and disappointment is very true. I think it’s much of the reason that the political climate in America has become so nasty and destructive.
Ah! “…simply doing the work that needs to be done.”
Yes, one step at a time.
Accepting life just as it is. That sounds doable and relaxing.
And feeling grateful for my breathing and my beating heart. Yes!
It’s my thinking about what could have been, or should be, that causes me stress.
“It’s my thinking about what could have been, or should be, that causes me stress.”
Isn’t that the truth?! It burns up an enormous amount of energy as well.
I think that in this culture, we don’t rely enough on each other, or at least we’re shamed into thinking that to be anything but completely independent is abject failure. I think you’re spot on about why this society hates (and I don’t think “hate” is a strong enough word) people with disabilities who need additional assistance to make it in the world.
We were discussing, in class, yesterday, the “Heinz Dilemma”, a famous scenario which gauges the morality of an individual based on the type of answer given. The instructor explained how people from places outside the United States responded to the question about whether the man in the scenario who didn’t have enough money for medicine that would save his wife from dying should steal it from the pharmacist. It was interesting that middle-eastern and Africans would often remark, “What about the man’s friends? Why couldn’t they help him? or “Where were his relatives? Why didn’t they step in and pay for the medicine for him?”
One thing I hope comes out of this economic downturn is that people will get rid of the false belief that everyone can succeed without the contributions of others. But I know that’s too much to hope for judging from how quickly Americans forget when they were the ones who needed help.
I had never heard about the responses to the Heinz Dilemma from people outside the US. That is fascinating. I’d only read about the responses from the male and female students mentioned in Carol Gilligan’s “In a Different Voice.” Very interesting that people outside the US think in terms of solving the problem via a network of relationships, much as the girls did in the Gilligan book.
“One thing I hope comes out of this economic downturn is that people will get rid of the false belief that everyone can succeed without the contributions of others.”
It’s so true. I like to think of myself as an independent, self-reliant person. I’m always humbled and floored, really, when I really look hard at how much I’ve been blessed with from other people in my life, how often the presence or support of someone else made a critical difference at some point in my life.
I hear you, chavisory. In my view, our hands are the hands of God, comforting and supporting each other. I’m amazed by how many times the help has been there when I least expected it.
I don’t really have anything to add. But it’s a great post Rachel. As always.
Thank you, Laura.
So well said, Rachel. There is a lot to think about in this post.
My initial reaction is that whenever I find myself saying something “should” be a certain way, it’s worth taking a step back to see whether the thing I am referring to is actually something I am entitled to or just something I want.
Yes, “should” is always a red-flag kind of word. When I hear myself using it, I know that I have to take a step back and look at whether the images in my mind’s eye are realistic.
I think one of the problems with culture today is seen as the “right” way is defined by what we see in the media and the ones in power, and the media and ones in power are usually controlled by people who do not have disabilities. Why do advertisements always say life is easy? By saying life is easy, it shows that you are not thinking about all the people that life is not easy for. “So, because many folks don’t see the kinds of lives that most people live, they become unfamiliar with the idea that life is full of harsh and painful things.” This quote goes back to the who controls what we see. More folks would be familiar with the harsh and painful things if they were able to see them more. “If you weren’t born with a disability, but you live long enough, aging is sure to take you out of the camp of the typically able-bodied. Dealing with that change, at an advanced age, can be very hard. ” This makes me wonder if people who have disabilities might be more prepared emotionally or mentally for old age.
It would be very interesting to do some research about how disabled and non-disabled people cope with the onset of aging and all of the social, emotional, and physical changes that come with it. So much of what one sees in the media is oriented toward youth—including the drive to use anti-aging products to get rid of the visible signs of aging—so I wonder how much has been written about how anyone deals with this process. It seems like most people prefer not to think about it, which is a great loss, because it’s an inevitable part of living for a great many people.
I’ve often thought that the ideas that “You can be whatever you want, you just have to work hard enough” or “Your dreams can come true, you just have to want it enough” or even “Anyone with sufficient ability can become president/prime minister/whatever” are very damaging. What does that imply about everyone else? It must be “You didn’t succeed because you didn’t try hard enough/weren’t committed enough/spoiled your own chances.” Disability reminds people that actually, everything is NOT within the reach of anyone who just tries hard enough. That thought challenges the very foundations of western society.
It certainly does challenge one of the primary assumptions in our culture, and it means that most people—disabled or not—end up outside the paradigm. Time for a new paradigm, I think.
I saw my new Doctor at the VA yesterday, (Actually an NP, but seems alright), and filled him in on all my ailments. The pain in my back, which I’m not sure is caused by my scoliosis, arthritis, or connected to gall bladder problems. I asked him to order some X-rays, which he did, and I should be getting them on CD sent to me soon. Told him about getting tinnitus after taking buproprion, (and I’ll be seeing an audiologist about that next week). Also told him about Aspergers, and how it manifests in me. He seemed okay with it, and I plan to educate him a bit more next time I see him. We can’t just assume that professional caregivers are up to speed about autism, or have any real understanding of it.
Great post, you have a fine way of saying things.
Good job taking care of yourself, Clay. I find that the best doctors are the ones who allow themselves to learn from their patients. I have a doctor like that now, and she’s fantastic.
from “Exploring Psychology Fifth Ed. (2002) by David G. Myers, pg. 553:
“This ‘just-world phenomenon’ reflects an idea we commonly teach our children-that good is rewarded and evil is punished.
From this it is but a short leap to assume that those who succeed must be good and those who suffer must be bad.
Such reasoning enables the rich to see both their own wealth and the poor’s misfortune as justly deserved.”
Paraphrased from M.J. Lerner’s “The Belief in a Just World: a Fundamental Delusion”, 1980.
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That’s what came to mind for me.
No one deserves to suffer as much as so many people do, in so many ways.
We come up with inaccurate morality myths to justify values of the status quo, including the unequal distribution of resources. How do we measure success, who is deciding who matters ?
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Being reminded of one’s essential corporeality, deprived of the artifice/veneer/image of being able to pretend “everything is easy for me”, might make people feel uneasy…mortal. Maybe other people are using denial as a coping/defense mechanism against decline/debilitation, and are in denial about being in denial ?
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I’m constantly aware of so many actions/mentations that other people perform, but which range from being difficult to impossible for me to learn. Those repeated experiences mean I now consciously remind myself that when something is easy for me (which I take for granted, I’m used to how I am) that it might not be easy for someone else.
Belfast, I think you’re absolutely right. We remind people of their own mortality. In this culture, those reminders come as a shock.
Oh dear lord, with the social issues I have “how it’s supposed to be/work” has been such a crock…my personal pet peeve (right now) is all the children’s stories about how you should just be yourself and everything will turn out fine.
They’re all fucking lies. And after buying into them for so long, it’s no wonder I’m depressed.
I know. That “just be yourself” thing has always worked like a charm for me, too.
What are people thinking? Are they unaware how many people get stomped for being themselves? Just look at the history of any minority group, anywhere on the planet, and it’s pretty clear that just being yourself is a very hard road.
Wow. Something to think about. Sometimes, during the hard days, I do think that all this is supposed to be easier. Usually those kind of thoughts mark the on-set of one of my episodes of depression.
One of the things that frustrates me is the tendency for other people to say things like, “With three children with autism, it’s no wonder you feeling that way.” Like all the frustration and stress and difficulty coping can be laid at autism’s feet (if autism actually was personified and had feet).
I’m at loss on how to respond to these people. “You don’t understand. It’s not my boys. It’s not autism. It’s all of it.” But the lack of understanding remains.
I never thought parenting would be easy, after all you’re talking about little human beings who need you to help them grow into good, adult human beings. How can anyone thinks that’s easy? But life…? Ironically, yes. Being that good, adult human being should be easy, right? You work hard, you earn your way, and things get easier.
But that’s not how it really works and I need to let that sink in. Thank you for the illumination!
This is such a tough one to grapple with, because there is so little support in our society for the notion that life is a difficult thing. When people try to explain it by saying “Well, of course, it’s the autism,” they don’t realize that they’re just reinforcing the sense of isolation we feel; it’s as though everyone else’s lives are easy but ours, and that’s simply not true. It’s very difficult to break through that myth, because it’s constantly reinforced. And it’s very hard to see things in broader terms, because we’re so insulated from so much of what goes on in the world beyond our borders.
It does reinforce the isolation, but at the same time…it’s not the autism and it’s not my boys. I’ve seen a lot of people struggle with a lot of different things. I suppose maybe there are people who do have it easier than I do, but I also know there are a lot of people who have it much more difficult.
Being able to acknowledge that “easy” isn’t an effective or worthwhile goal is important. I suspect a lot of people would be happier and have less stress (though no fewer reasons to be stressed) if they reached the same conclusion you shared with all of us.