I suppose I should begin this with an introduction: My name is Mary. I'm an almost 56-year-old woman with cerebral palsy. That makes life in this body at least interesting, often frustrating, and occasionally instructive.
The interesting--For as long as I can remember, my body has required creativity. As a child, I learned to get up stairs sideways, holding on to handrails, or alternatively, to sit up stairs, using my arms to push myself from one step to another. (My arms and my mouth get me through life, at least in the physical realm.) My body and soul are distinctly different (Is that redundant?)--I find the interior, spiritual world much easier, even fun, to move through--yet they mirror each other in that almost nothing about me is conventional, a fact of which I am proud but I hope not arrogant.
The frustrating--Contrary to stereotypes about people with disabilities, I am an impatient sort. Actually, I am the most impatient person I know when it comes to my body. It drives me crazy that I can do almost nothing physical without having to be careful, vigilant, and aware. Mindfulness is a wonderful thing, but I would very much appreciate some mindless moments which did not have consequences ranging from moderately annoying to disastrous. This is not a particularly PC thing to say, but I don't care. Having cerebral palsy is not tragic. It is not something I'm ashamed of, but it's not a picnic either. I would not choose it given the option.
The instructive--The above paragraph notwithstanding, I have learned some important things in and from this body. The other night, as I was struggling to address yet another of its demands for attention with some degree of compassion, this thought dropped into my head:
We are put on this earth to learn to love that which is imperfect.
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That covers a lot of territory--everyone and just about everything I know-- and bodies with disabilities are ideal vessels in which to at least begin to try to learn this, though I'm sure I'll be trying for a lifetime and beyond. (Similarly, families were created as places for us to learn about unconditional love--Receiving it if we're lucky, but giving it definitely.)
Some closing thoughts, for now:
Blogs are perhaps unavoidably self-absorbed things. They carry the danger of being narcissistic. That is not my intention. If the personal is political, I hope it is also at least in some way helpful to other people. And I hope it encourages a dialogue between us, whoever the "us" turns out to be.
One of the most oppressive realities I have experienced is the expectation that because I am a person with a disability, I can only talk about having a disability. I am blessed to say I live a very rich, full, and nuanced life. I am interested in many things, as my book collection will attest to; I love and am loved by many people. It is my hope that this blog will reflect the fullness of who I am and the life I live--a life which, like my body, is interesting, frustrating, and instructive. I welcome your responses.
My first response is, Wow, do you write well, I'm going to enjoy following this blog. (Back in the days when I did more reading, I loved reading the NYTimes for the simple pleasure of reading well written prose. My dream day off then was arising late and reading the Times over hot English Breakfast tea with lemon and eating a bagel with cream cheese. That was also before I was a vegan.)
ReplyDeleteI think you used the word 'nuanced' -- your writing is so carefully nuanced, as I think the writing would be of a woman who finds her inner life easier and more fun than her physical reality. There were several periods of my life when my spiritual life and communicating with God were my greatest focus and more fun and rewarding than anything else, most recently before I got back into relationship. I'd love to hear about that fun inner life of yours, and I'd also like to hear about living with a disability because it interests me and I don't find it easy to ask about. I've sometimes thought that we all have disabilities of different kinds, but I wonder if that's disrespectful of your disability or even a kind of denial. My own disability would be living with almost constant fear as a result of events in my childhood (if you're familiar with the Enneagram it won't surprise you to hear that I'm a Six with a Five wing). I so often hear people talk about fear as the enemy, and it's hard for me to imagine life without it.
Thanks for starting this, Mary, I look forward to more.
Oh, and by the way, I didn't know there was a stereotype about people with disabilities being patient, I would think it would be very difficult to be patient. Ta for now.
ReplyDeleteEnglish Breakfast tea and a bagel with cream cheese. . . Can I come to your house for breakfast?
ReplyDeleteI have mixed emotions about the idea that we all have disabilities. On the one hand, if I take the word dis-abilities apart, it means, literally, inabilities. Yes, we all have those and it is important to recognize that in many ways, those of us who are called "people with disabilities" are not that much different from so-called "able-bodied" people. Much of the discrimination and even cruelty that people with disabilities have had to endure has come to us because people have labeled us "freaks", insisting that we are something other than human--sometimes less than; sometimes more than ("Angels unaware"). On the other hand--and it is a big other hand--people with disabilities usually find certain tasks difficult to a degree that able-bodied people do not. Often those tasks are essential, and often we find them impossible to do without assistance. Disability is also as much a social reality as an organic one. That is to say, because I am recognized as and labeled a person with a disability, I have to deal with attitudes and prejudices that non-disabled people do not generally encounter. These attitudes have nothing to do directly with my particular impairments, and often result in a denial of opportunity, all of which makes my life experience profoundly different from that of someone who does not have certain impairments, and is not recognized as or labeled a person with a disability.
And since I said this would not be just about disability--I do know about the enneagram but it's been a while since I worked with it, so I forget what all the numbers mean. I'm a four. All I remember is we don't like being ordinary or doing mundane stuff. True enough in my case. What's a six?
Sorry for the delay reading your comment and second post, which I'm just getting to now after a hectic few days. How delightful that you've heard of the Enneagram! Yes, for most Fours a sense of being unique is crucial. Sixes are sometimes called the Loyal Skeptic, or the Questioner, for me it's crucial to feel safe in the world, and rooted and connected to those around me, both of which increase my sense of safety. What you say about disability makes sense, and though I'm not very attached to my thought that we all have disabilities, if I were to continue along that line, I would say it depends on what you might consider
ReplyDeleteI'm glad you're loyal, and we share the questioning trait. I also value being connected, although I'm an introvert on the myers-briggs Type Indicator, so I like time alone too. Being a 4 doesn't go well with having a disability. The disability requires way too much time on ordinary tasks! It helps when I remember that much of the ordinary is also sacred.
DeleteOn what you might consider essential tasks, I think you probably mean staying-alive-related tasks, and I rarely have to worry about staying alive (though had many periods of depression when I was younger). For me one really difficult thing is staying self-confident. As a Six friend said recently, it doesn't matter how many times I'm told I've done well at something, I still doubt my abilities. Not a staying-alive-related task unless one is in a depression.
ReplyDelete"Essential" is a broad category, covering basic functions such as walking, bathing, dressing, seeing, hearing, and processing. Processing difficulties would be considered an intellectual disability, which can range from a learning disability to something like Down syndrome. Depression would also be considered a disability, as would various forms of psychiatric or mental illnesses. When I say "would be considered ", I'm thinking of the kind of conditions that would be covered under the Americans with Disabilities Act.
DeleteAnd doubting your abilities is not unique to a 6!
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