If a man’s definition of masculinity isn’t compatible with his disability, then there’s no good use for the man-box.
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I had always been a caregiver—for hospice patients, the elderly, children, and adults with disabilities. Being a caregiver was a large part of my self-identity . . . until my life changed abruptly.
For several years, I was an in-home helper to an elderly husband-wife couple. He was a WWII Veteran who had suffered a stroke post-retirement. She was a retired triage nurse now blind, caring for her husband in their home. The man who was a protector was now in need of service and protection.
While in their service, I saw the importance of treating the elderly and disabled with dignity and respect by allowing them—rather, by not interfering with their effort—to do whatever they could do for themselves. A certain degree of independence is essential for dignity and self-respect, I observed. I later kept this lesson in mind when I was giving care to my grandfather, and others.
A certain degree of independence is essential for dignity and self-respect, I observed.
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Last year, I welcomed into my home “Jim,” a man who was one of my best friends when we were in kindergarten together. When he was in his early twenties, Jim was hit by a car as a pedestrian. After coming out of his comatose state and enduring physical and occupational therapy, he eventually learned to walk again, although painfully crooked. Decades later, he would be my roommate and employer.
As Jim’s in-home personal assistant, I observed him cautiously navigate his every step, not only while we were out on errands, but also as he moved from his bedroom to the bathroom. Doing so appeared to be labor-intensive for Jim. How could I help when he repeatedly told me he wanted to do almost everything for himself.
He’d grumble under his breath and I’d rush to see what was troubling him. “Nothing,” he’d tell me, just pain.” I had no clue how simply sitting could be painful.
Jim was a proud man in his own ways. He hated to ask for help and clearly didn’t want to be a bother. I was there to assist him, but aside from meals, laundry, and necessary transportation, Jim said he would rather go without than ask for help.
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I’ve been a member of The Good Men Project community for about two years. The idea of participating in conversations about what it means to be a good man seemed natural to me; I had been considering the criteria for more than thirty years. I raised my son intentionally to be a good man after wondering how my father could walk away from his family.
But it wasn’t until Jim was in my care while I was participating in the GMP community when I realized that a man’s perception of his own masculinity can be affected by the health or disability of his body. I imagine it is somewhat similar to the women who have said their femininity is different after having had a mastectomy.
I realized that a man’s perception of his own masculinity can be affected by the health or disability of his body.
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Jim demonstrated every effort of maintaining for himself his own definition of masculinity. Unfortunately for Jim, his definition was stuck in a traditional man-box that he wasn’t able to sustain, which lead him to struggle with his self-identity.
Two months after Jim moved out of my home, I was injured on a new job. It was a split-second, life-changing moment. After my initial medical care, I viewed the first few weeks as a recovery period. But as I approached the 8-week mark, I began worrying about long-term disability. I noticed my movements were more calculated, just as Jim’s were. Just as my previous clients’ had been. My moans and groans of pain were . . . much like Jim’s were but more subtle than my grandfather’s noises.
When I sat to consider it specifically, I became aware that my injury has not affected my perception of my own femininity, but it has significantly interfered with my identity as a caregiver.
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Bradley is a young man my son’s age. We have been friends for ten years, since we were classmates in college when I was his note taker. Bradley has Cerebral Palsy and has used a wheelchair to get around since he was a young child. After my injury, I visited Bradley when I went to my doctor appointments in his neighborhood. We talked about disability and self-perception. I was feeling guilty that I was complaining about my injury while he was sitting in his chair. He responded with a comforting smile, “I’ve always been this way. This is my normal. It’s all I know.” That was my ah-hah moment.
It was my relative disability that was more of the problem for me. What I had been able to do versus what I can no longer do is what I find frustrating, just as was the case for Jim. I imagine that elderly people feel this way, too, although we anticipate a certain level of decreasing physical abilities with aging. The sudden, disabling events are what throw us off our game.
While visiting Bradley, I couldn’t throw his wheelchair into my car for us to go for a ride. While visiting my grandchildren, I couldn’t have them climb me to do flips, nor could I get on my hands and knees to have them ride on my back. And it was fortunate timing that Jim moved out when he did or I would not have been able to care for him after my injury . . .
My perception of Jim was irrelevant. His definition of masculinity mattered to his self-identity . . .
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It occurs to me that our self-perception and self-identity is a bigger part of who we are than is what others perceive us to be. My perception of Jim was irrelevant. His definition of masculinity mattered to his self-identiy, and it mattered to me only in that I did my best to treat him with respect and dignity.
As for me and my disability, I’ll have to find a different manner of being a caregiver, if I continue to feel the need to self-identity as a caregiver.
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Photo credit: Flickr/U.S. Embassy The Hague
Well DJ, that is why we need to have right to die laws so at least we don’t end up in the physical and mental condition waiting for to die in our declining years.
G- Thank you for reading and commenting.
I agree with you that we should have the right to end our own life, assisted or not. I know several elders who lived beyond 90 years of age while suffering who would have preferred to end their own misery. If our culture respected the rights of our elders or disabled or women to choose for themselves . . . There’s the answer – it would create a slippery slope, giving certain groups of people the right to choose for themselves.
–LMB
Independence is one of the last vestiges of traditional masculinities that still goes virtually unchallenged today, so we cling to it like debris in the midst of a sinking ship. And why shouldn’t we? In my experience, even the staunchest of feminists consider self-sufficiency to be a virtue in a man, and I wouldn’t disagree. I don’t even chafe at the expectation, really. But for any man who has ever found himself struggling just to tread water, there is an anguish that comes with the realization that he’s never actually heard someone say that it was alright for someone else… Read more »
D, Thank you for reading and commenting. Maybe we should each and collectively move toward interdependence rather than strive to maintain our respective independence. You said, ” . . . even the staunchest of feminists consider self-sufficiency to be a virtue in a man . . .” As a single woman who considered herself an independent feminist when younger, I would have agreed with you then. Now–and since I was in my late 30’s–I pay more attention to potential for interdependence. Still, would I hold a man’s head above water indefinitely? I’m not sure if I could be a Dana… Read more »
No idea what I’d do should I end up in this man’s position. My greatest and only fear is these days is aging, losing my physical abilities, being unable to, ever again race the wind, participate in the physical that I once did. Even worse is to feel useless, dependent on others. It is the one thing that I am unable to find the answered to, but only prepare myself for the inevitable. I’ll find the way I’m sure, but its not going to be an easy trip. This essay helped a bit. I guess we all struggle to one… Read more »
Hi, DJ. As always, thank you for reading and commenting. I think we can’t know until we get there. If we knew in advance, the first home we buy would have an entry that accommodates a wheelchair, a bathroom that has hand rails and a shower with a safety chair and room for an attendant to sit on the outside of the shower. I had been a caregiver –the attendant on the outside of the shower–yet I made no plan for my own disability . If you want to plan for later, I think as an alternative to having plenty… Read more »