I dunno, I think maybe you're taking "overcome" in the literal sense, when maybe it's referring to the people who live their lives in spite of disease and disability. Personally, the fact that you continue to live, write, work, have friends, see your family, and get pissed off about book descriptions says to me that you ARE overcoming the obstacles. Or going around them, or under them, or whatever it takes. You are overcoming precisely because you are not curling up and whimpering and dying in a corner alone. So many people DO see disability as the end of their lives that a disabled or chronically ill person who's actively LIVING, whatever that means for the individual, is "overcoming the obstacles". I have personally known people who couldn't deal with the sudden reality of a wheelchair and DID give up and die. Hell, I've known able-bodied people who don't live as much as some of the disabled people I know. That, to me, is what I think of when I read about "overcoming disability".
My reaction to this post is one fervently-felt word: AMEN!!!!!!
Great post. I appreciate your stroppiness and also your links between writing and refusing to be hidden away. I like Carrie's comments, too, about sometimes needing to "undercome" or come around an obstacle too.
Made me think a lot (and write about it too): thanks.
I've said it before and I'll say it again, it doesn't matter if I'm with you in person or via the internets, I think of your smile, your voice and your wit first, your disability is secondary (other than keeping an eye out for potential collisions!). I, of course, wish you had it much easier. Since I can't just make it so, I can be your friend.
Hmm. I'm a relatively able-bodied person, so my thinking will be filtered through a different lens than yours, but I reacted to the description closer to the way Carrie did. It doesn't talk about overcoming disabilities, it talks about overcoming the *challenge* of disability. Some of those challenges are physical, and some emotional. How does an avid reader respond to no longer being able to hold a book? Learn to love audio books? Prop the book in a mechanical holder and turn the page with some sort of gizmo? Give up reading? For those of us that don't have to face the challenge, it's fascinating to learn how others have, because, who knows, maybe someday I'll need to, and now I can at least imagine how it's possible to cope with what could only feel like a significant loss that needed overcoming. But maybe that's why I read in general (not just plucky stories)-- to give me glimpses into the "other"--to take me inside myself by taking me outside of myself.
I suffered through the death of a child many years ago. Many people told me that they "wouldn't have been able to cope." But, of course, most people in the situation somehow do, eventually. Some with more grace. Some with less visible damage. For a period of time I read every account of parents grieving for their dead child that I could find, ostensibly because I wanted to know "how," but really I wanted to know *that* it was possible to "overcome" the grief. And maybe that's the reason for wanting (eventually) plucky (we also want to see the dark sides too, otherwise we don't believe it). We want to believe that somehow we'd find it in ourselves to live life to the fullest, whatever challenges are thrown in our path--and "seeing" others do it makes it at least seem possible.
It is a mitzvah to have blogs to read like yours. I have learned a great deal by being allowed to "overhear" your conversations with yourself. Thanks.
another "AMEN!" to add to the pile. My experience of the "I don't know how you do it" is that it is just another example of distancing - more like "I don't want to imagine what it might be like to live like that, so I won't even try." "Overcoming" or "triumph" are horrible terms for what it's like to coexist with/beyond illness or disability - ironic in that they are crafted by the dominant, "able" group in society, since the concept of disability itself is purely cultural, not physical at all. My greatest struggles are frequently against social norms and reactions. I seem to live with the nature of "overcoming" that, moreso than the direct impact of the disability itself. ;~)
~ hb33 ~
Lene,
I was referred to your blog from the Yarn Harlot and I wanted to tell you how much I loved this post.
I have metastatic breast cancer (cancer that has spread to my liver). Cancer at this stage is incurable but after a very scary year, I find myself in remission (but continuing treatment). Cancer, in my case, and for growing numbers of people is a chronic condition that needs to be managed but through which we can lead full, meaningful and happy lives.
This piece really touched me and resonated very loudly as well. I am going to link to it from my blog tonight.
My reaction to what you said is pretty close to Carrie's. I know there are many more of us than not who believe that folks who don't get mired forever in self-pity are to be admired because you DO get on with your lives and have real lives, however each person defines it. It's a shame though, that so many of us are wary of saying it for fear of offending you. My feeling is that all humans who go through tragedy and discrimination but who move on and carry on deserve our praise. "Overcoming" and "triumph" mean to me simply that you have let YOU shine through in all you do, rather than being defined by whatever the personal tragedy is.
Donna, my husband and I lost our first baby about halfway through the pregnancy. Twenty-six years later, what I have learned is that it will always hurt at some level, but the pain becomes impetus. Our friends deserted us--and that made me adamant that nobody would feel deserted in their own pain if I could ever help it. I can see now how time after time I reacted to someone else's pain in a way I might not have had we not gone through that. I wouldn't wish it on anyone, but I'm glad now for how it taught me to reach out rather than turn away.
Actually, that ties in with this whole post, because that's what the so-called overcoming thing is all about: being the best of ourselves in what we have to give to the world, no matter what.
I'm intimate with disability, but from a different perspective; I've talked before about having a disabled child for whom I will always have to care. A lot of people say to me, "I don't know how you do it" and/or "I couldn't do it." My reply is, "Yes, you could, but you wouldn't want to." I've also been told that if I were summarily relieved of my responsibilities to him I might come to appreciate my newfound freedom -- as though I were somehow unaware that my life differs from a "normal" parent's.
I understand what Carrie et al. are saying, but it sure doesn't feel like overcoming; it feels like plodding along, with no finish line or summit, nary a milestone, even. That sounds grimmer than it really is -- the sun does shine now and then. But there's no overcoming, no winning, no planting of flags.
You're looking at 'overcoming' a disability as someone with a disability.
An able-bodied person looks at you and sees someone living a pretty full life and sees someone who has overcome their disability.
As you point out, some able-bodied people figure that they would be better off dead if they couldn't walk. To these people, you have indeed overcome your disability simply by living life.
Thanks for your post Lene. I have a two and a half year old who was born with a genetic disorder that has meant a number of surgeries, hospital stays and some creative and cool technology to 'overcome'. The most surprising thing in this whole journey has been that other people were surprised by our ability to cope with all the obstacles she has faced. There have been those that saw her disease as a tragedy, those who questioned our decision to keep expanding our family after her diagnosis, those who comment on how hard, or tiring, or difficult her care must be.
I can't help but be surprised by most of these attitudes. To be honest it was months after her birth before I started to recognize that people were going to treat her as different. To me she is Finny, the way she was born, the way my body made her, no other than herself. To me she is no different than my other children, no better, no worse, no more tragic.
We faced one of the most telling moments when we made what we thought was a simple decision for our family and applied for a a disability benefit for Fin. Given that it would provide a small income to put towards her care and drug and supply benefits for her treatment I thought the decision was simple enough. I was truly surprised when we heard from one family member that we should forgo the benefit because it was for children with 'severe disabilities' and she would undoubtedly never come out from under a label like that.
Two and a half years into this journey Fin is Fin, not because of her illness, not because of her feeding tube or her ostomy but because she's Fin. Unique in her own right. It is a shame the role that illness plays in the larger social conscience, particularly when it is unwittingly used to compound one's personal obstacles by attempting to use the illness or disability as a definition of the individual themselves.
Thanks for your thought and insight on one of the less discussed aspects of long term illness and disability, what a nice post to trip over.
I've just found the link to your blog via MyRACentral and the article titled Pluck. Thank you for stating so eloquently my feelings on this issue.As an RA sufferer - there is a constant pressure on me to fix/overcome/change/learn to master or learn to let go. Most times, I get the impression that most people think there has to be a solution/there has to be a way to overcome if only I would get my act together or get my mind in the right space or try this particular treatment. They view the 'not overcoming,' the unwillingness to constantly try to 'fix'ourselves - with horror - it means there's no solution - it means we are helpless and therefore, they might also be helpless. It is exceptionally difficult for the average person to accept that people can just be - that we need not get on the hampster wheel of endless striving for triumph over ourselves and we can still LIVE - with illness and imperfection. Thank you for your blog. Its really appreciated at a time when I feel so isolated.
Thank you for your blog. I suffered for years (decades) before being diagnosed with fibromyalgia. Every day it was a different disability. I was self-absorbed with my lack of mobility and distanced myself from everyone and every activity. Learning to live with and overcome the psychological stigma was harder than the physical hardship. Today I don't let life pass me by. I move with whatever limbs that day gives me. I don't care what I look like or what other people think. Any movement is forward motion and it's all good. I have overcome only because I'd learned to cope.
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