Skip to main content

I'm My Own Woman! But could I get a little help...

I went to this panel/performance at Access Living last Friday. It was on the intersections between disability, race and community. Very interesting. There was one thing that the moderator said, though, that really struck me. It's something I've read and taken note of before, but for some reason hearing it in this context really drove the point home.

He made the point that disability and disease challenge the idea of "the individual." In American society, we're pretty much taught to take care of ourselves. Individualism is extremely important to the way we conceptualize our bodies and our minds. The "I" is at the center of the American dream. If I work hard and educate myself, I can rise through the ranks of society. So, what happens to this concept when a body must depend on others to perform certain tasks, or even to make it through the day?

This is more of an issue for some types of disability than others. With Crohn's, for instance, as long as it's maintained, I retain a great deal of autonomy. However, when I'm not doing well, I need people around me that understand my needs and can help me out. This is not an easy concept.

When I'm in flare, I'm dependent on the help and care of others and that is just not something that feels good, no matter who it is. This is not to say that I'm not grateful for those friends and family members who've supported me in the past. I am. I just think that this idea of the individual is at the heart of the denial that surrounds disease and disability. We the people love our self-governance, and disease threatens it. When one body becomes dependent on another to perform simple tasks, it questions the individuality that our country was literally founded on. Freedom of speech? Religion? That means the freedom of the individual to do what he/she wants. Disease doesn't always afford us that option.

On a more personal level though, I think this idea of the individual directly inhibits our ability to accept our disease and to ask for help before a situation becomes catastrophic. "I don't need help... I've got it.... I'm fine." How many times have these words gone through my head? And all because I have this idea that asking for help means handing over control. This is not true, of course, but that's what it feels like. Like suddenly I don't make my own decisions. They're made by committee, and I may or may not have input.


  1. Excellent post Maggie! I too often hate asking for help. I don't want to feel different (even though I am).

    You spoke about individuality, and I wanted to point out that one of the cool (and frustrating) parts of Crohn's is that all cases are different, making the disease an individual in itself.

  2. Thanks, Tim!

    Interesting point! It's true, living with Crohn's is a very singular experience.

  3. Lovely post, Maggie.

    I like to think of asking for help as naming your community. But there are all sorts of factors that threaten that notion of community (capitalism, competition, etc.). Resisting those threats is just as important as resisting boxed up definitions of disease and disability.

    Write on, grrl!

  4. Maggie...this is REALLY important. Especially to me, a female teacher at a women's college. My understanding is that women are more likely to collaboratively learn...I know I experience it in my classes, both technique and theory. Yes, the individuals come to the table or studio with what they have and are willing to share, but the really juicy stuff comes when we are figuring out stuff togther. My experience is, usually, within a group of women, you sometimes don't even need to ask for help---it is being offered. Now, you do have to remember to TAKE that help... I think this is a great starting place for your residency next year. This and the idea (from the Nov 15 post) that we need to address our lifetimes, not just this current moment. (The current moment IS important, but like most everything else, we must find the balance between the moment and the lifetime.)


Post a Comment

Popular posts from this blog

Overwhelming Nuance - Dancing Crohn's Disease

Below is small segment of my Dance Studies Research Project, "Cripping Dance: Radical Representations of the Disabled Dancing Body." It's the bit I wrote about my own work, Overwhelming Nuance (excerpted below), which, as you will see, was inspired by the feelings of denial that so often accompany disease. 

Nearly four years after I was diagnosed with Crohn's, it flared massively. Lost in the idea that "my disease will not define my life", I ignored for months the signs of the looming crash. This breakdown forced me to come to terms with the reality of my disease. I suddenly understood that the idea that the mind might overcome the body just supported the willful denial of my disease. After this experience, determined to force an openness about disease in my own life, I claimed disability as part of my identity and choreographed my own "crip" coming out.

The issue with "mind over matter"

I think about this pretty constantly. Is "mind over matter" really a thing? Is it really possible to outsmart your body? If so, is this a useful tool? Or is it a harmful lie? Is it just kind of a white lie? Also, (and this is what the whole thing really boils down to for me) is the mind actually separate from the body? Are we our bodies or are we our minds? Do the two have to be mutually exclusive? Or are the mind and the body actually one and the same?

My opinion on this subject has changed drastically and regularly over the years. Early on, right after my diagnosis, I was firmly ensconced in the pro-mind-over-matter camp. Without ever thinking about an alternative, ironically. Actually, this started long before I was diagnosed. For at least a year leading up to my official diagnosis, I experienced intense health issues and paid very little real attention to them. I just kept on going as best I could, thinking these symptoms would go away eventually. This, obviously, did no…

HAWMC Day 27: Challenges and Victories

Today, I'm supposed to list five challenges and five victories having to do either with my health or my activism. Let's just dive right in.


1) ...  ...  ...

Okay, I'm having a little trouble here. While I understand the value of identifying five challenges and five victories, I'm not sure I can. No, that's not true. I absolutely can. I just think that anything I say will be kind of arbitrary.