I know the situation you are struggling with is not of your choosing, nor of your husband’s choosing. It is what it is, and for no good or understandable reason.

It is important to remember that we are not necessarily diminished by recognising such limitations and still going on to live (and to love) as good and hard as we can within situations not of our choosing and beyone our control.

Just to live and to love, despite all, are sometimes in themselves the ultimate triumph.

Pam

Pam, I can’t give you any ready answer with this, although I do understand what may lie ahead in relation to caring, having spent ten years helping to care for my husband’s uncle, who suffered from all of the worst manifestations of Alzheimer’s among other things. It is extremely difficult to bear sometimes. Not being recognised is par for the course, and it is hard enough, but Paddy, for example, came to fear things like taking a meal I had prepared in case I was trying to poison him…well, you can imagine.

What kept me going through the hard times, and also through the strange times when people kept saying “aren’t you good to him” (which I read as code for “I can’t imagine why you would even bother,”), was this. I spent much of my feminist youth arguing for independence for women (from our caring roles, among others). But as I grew older, had children, and acquired dependent relatives by other means, I have come to appreciate the value of “family,” small “f,” as opposed to Family, capital “F,” which is what homophobic, patriarchal defenders seek to protect.

In “families” – that is, the real life close-knit connections that people build for themselves within their closest circle – whether by choice, by birth, by adoption, by fostoring, or simply by close contact, each individual matters, not because they can contribute any material benefit, but because every person has a value and a place of their very own. Interdependence, rather than independence, defines how we operate within “families.”

To me, my role as a carer in a small-f “family” falls between two strong tendencies which powerful interests emphasise – but in opposite directions. The capital-F “Family,” that I learned in my Christian childhood was part of God’s plan, is a pre-determined set of rigid roles – “wife” “husband” “son” “daughter” – which lays out rules about who can participate (not lesbians or other homosexual folk), who is in charge (the father), and what the role consists in (wife=caring/nurturing).

On the other hand, the apparent liberation of being “independent,” is in some ways the capitalist trap, which says that people only have value as producers and consumers – if they are dependent on others they no longer have any value. That striving for independence can doom us to living each on our own island without being able to reach out to one another in care and/or in need.

But no one person can spend their life without needing – in childhood we need our parents or care-givers, and in age we will again (should we be so lucky to see it), and in between, some smaller proportion of us will always need some degree of care from others. And, as I see it, during the mid-adult years, those of us who are both strong and able do owe a duty of care to those within our reach who are in need – we owe it indirectly to those who have cared for us in the past, and those who will care for us in the future.

And, although it breaks my heart to say it, because I know for some avoiding this is for all practical purposes impossible, I do feel we relegate this duty of care to the state at our very great peril.

Those are the thoughts I’ve come to at this stage of my experience – they may change, no doubt will change. And I don’t know if it is any help, so “take with pinch of salt” My very best empathy is with you in this situation.

I was completely with the article until I got to one sentence. I don’t remember it verbatim but it was something along the lines of, unlike big fat women who got that way by eating too much and sitting around, I can’t control the fact that I have big boobs. I guess this woman never heard of fat women who, you know, exercise and eat right but are still fat. omg, they can’t control what their body did either.

I know that’s not disability theory, but it has to do with not being able to control something about your body.

I am finally in menopause but I had heavy periods that got heavier during perimenopause. It really bothers me that it is defined as a disease simply to be more than two standard deviations from the norm. Given my willingness to tough it out, my doctor suggested treatment if I couldn’t avoid anemia or it limited my activities.

Slightly related to feminist disability theory, can anyone steer me to a feminist theory of caregiving? My husband has been diagnosed with Parkinson’s and dementia and I am struggling to reconcile my new role with my feminism. And also to come to terms with something that I can’t control the way I have been able to control my diabetes by food choices and exercise alone (with the help of: http://www.bloodsugar101.com/ )

Amandaw, when I first read your comment about natural vs unnatural as an ableist move, I started to do the classic defensive, No no no! (Here begins the TMI section.) But then I went to the bathroom. I am having my period for the first time since my son’s birth almost 4 months ago (Lucky me, breast feeding has never given me that long gap in periods that many women get. Last baby was 6 weeks post partum before I had one!). I have terrible, horrible periods. Cramps that knock me on my ass – they are like giving birth, no joke. And the bleeding – it keeps me in my house for 2 or 3 days. It is profuse, to say the least. So I was thinking about your comment, and wondering how this section:

places a negative value judgment on people who do not operate the way you say is ideal.
If you really want to get the same effect without the ableism, you can say, simply, my body works how I want it to.

related to me. Because it’s a game I play in my head all the time. I like to use as many natural products as I can, both because I think that they can be better for me and the environment. Not always, and I rely on medication when the “natural” route isn’t feasible. I also face the financial barrier. Like with organic food, natural remedies and treatments are VERY expensive. I have used cloth menstrual pads, sea sponges, and the Diva Cup. I love each of them, but because of my periods, I can’t use them. It is beyond messy. I feel such guilt at disposing of so many products. Also, the pads burn my skin – it is miserably uncomfortable. (We cloth diaper for the same reasons.) I could use more “natural” pads, but we run into 2 problems. First, the cost, and second, the size. I wear 3 – 4 overnight pads during the day, and more at night.

So I get stuck with NOT being able to say “my body works how I want it to.” Because it doesn’t, and on top of that, I can’t “control” it the way that I would like to. I had never thought of natural product use/shunning of “non-natural” things as ableist. Classist, yes. Absolutely. But this really made me stop and look at my beliefs in a way that I had never considered before.