by Laurie Toby Edison and Debbie Notkin
Laurie: I blog with Debbie Notkin at “Body Impolitic” where we talk about body image issues in the broadest sense. I’m the mother of two daughters and I live in the Mission in San Francisco. I’ve published two books of my photographs: Women En Large: Images of Fat Nudes (edited and text by Debbie Notkin) and Familiar Men: A Book of Nudes (edited by Debbie Notkin, text by Debbie Notkin and Richard F. Dutcher).
Debbie: Along with my work with Laurie, I’ve has been an in-house and consulting editor of science fiction and fantasy at Tor Books. I help organize WisCon, the world’s first feminist science fiction convention,and I’m chair of the motherboard of the James Tiptree, Jr. Award, supporting science fiction and fantasy that explore and expand gender. My day job is as a contracts manager for a nonfiction publishing company.
We were very pleased to be invited to blog about the intersection between aging and disability, in part because we think it’s a smaller intersection than is generally perceived.
We are 67 and 58, respectively, and both of us are able-bodied, and active. Not because “70 is the new 50” but because our bodies work just fine.
The stereotypical intersection between aging and disability is the cultural expectation that they are the same thing. Whether people are saying “After 40, it’s patch, patch, patch” or just looking surprised if a woman over 50 lifts a 50-pound box, the common assumption is that age and disability are irretrievably linked, just as youth and ability are perceived to be irretrievably linked. While 75-year-old marathon runners and charmingly fragile disabled teenagers both show up as role models, old people who walk to the grocery store and people in their young 20s who are frequently unable to leave their homes because of chronic pain are equally invisible.
Living in our bodies is a day-by-day, minute-by-minute experience. In our experience, and the experience of our friends who are our ages or older, aging does entail additional maintenance time and energy. More small things about our bodies need attention than they did 25 years ago. We go to doctors more often. We have more routine tests. We have excellent memories, but we lose words more often than we used to.
These things, however, are not disabilities. Conflating age and disability is not only dishonest about the realities of aging, it is also disrespectful of the realities of disability. We can both go where we want to go, and get in to the buildings or transit vehicles when we get there. Neither of us is in the kind of pain (physical or mental) that keeps us from living able-bodied lives. To describe our minor aging issues as disabling would be to undercut and undervalue the real disabilities that people live with every day.
At the same time, the stigma of aging (which is partially fear of death and partially the culture’s definition that beauty must be youthful) puts a disturbing spin on diseases and conditions which are associated with aging. If someone over 60 has mild to moderate arthritis, almost everyone (including her) will view it as evidence of her body’s degeneration and eventual demise, while if someone under 40 has mild to moderate arthritis, it will be just something she has to live with, and not evidence that she’s falling apart. This distinction is so endemic in the culture that one of the major medical problems with aging is that people expect their aches and pains to be permanent, and thus don’t address them. One reason people disguise some of the things that happen to them as they age, just people who can sometimes disguise their disabilities, is that we are treated so differently in the world if we tell the truth about our bodies.
As fat activists, we’ve known for years that a fat person should always ask a doctor “What do you advise your thin patients with this condition?” Similarly, an older person should always ask a doctor, “What do you advise your young patients with this condition?”
Do disabled people experience the flip side of this stigma? Not being disabled ourselves, we can’t speak to that, but readers of this blog surely can. We’d like to know: Does being disabled sometimes get transformed into being treated as if you were aging? And if so, how does that work?
It comes down to rejecting stereotypes: the two stereotypes of aging are the ever-increasing decrepitude and incapacity on the one hand and the cheerful, active grandparents in the Depends commercials on the other hand. Like stereotypes of disability, or of women, or of people of color, these are not true. The truth is much more layered, complicated, and different for every individual.
13 thoughts on “Guest Post: Disability and Aging”
I have always felt that the idea of aging=disability is a fraudulent one. I was disabled at a young age, and I see my older female relatives always surpassing me in energy, strength, activity, and health. They have have some minor issues because their bodies are older, but they are, in general, healthier and stronger than almost all of the younger, disabled friends I have (mostly with chronic illnesses).
It has always bothered me that direct to consumer drug advertising for many conditions has older women in them. For example: Rheumatoid arthritis hits women in their “prime” years… 20’s and 30’s. Yet the ads for RA medications until recently only show happy white haired older women or grandparents playing with grandchildren. Why don’t they show college students and mothers of young children? Those are the people who can benefit the most with aggressive treatment at first diagnosis.
This post was timely, as I just talked to my mother this morning, she is about to turn 70, and she was listing off all the things she had just done, was planning, etc, and I once again said “you have twice the vitality I have, and I’m half you age!”. She is, for the record, a dairy farmer, and just stopped milking the cows twice a day last year. I’m lucky to get out of bed some days 🙂
I don’t really know how older people get treated differently compared to when they were younger. But I still get the idea that when I get treated differently than the norm, I get treated as if I’m a lot younger than I am, not older. Like a child, sometimes even like a performing pet. (Never mind that I don’t like seeing children OR pets treated that way either, it always makes me cringe a bit). It might depend on the kind(s) of disability people have, I don’t know; like most people know me as autistic and having generalised anxiety disorder. Most people don’t know I have chronic backpain though. I suppose that’ll get worse as I age.
Very nice post. I was thinking about the question posed a bit. My first reaction was no, I don’t get treated as if I were aging. I get infantilized and talked down to. But then it occurred to me that that’s pretty much what happens with aging, too.
The disease processes of a few of my conditions are similar to accelerated aging, and they are definitely interpreted by those around me (doctors, family) as signs that I am falling apart. There is a definite sense with each of my new symptoms that everyone saw it coming (except me), that it was only a matter of time.
I think there’s definitely a sense that if a young person is “stricken” with disability/illness, then that is a tragedy. But for an older person it’s just the natural order of things and it’s time for them to die. I have heard this from a lot by people who are in favor of cutting medicare and social security benefits for the elderly.
There’s a lot I’d like to say about this post, but I can’t seem to gather my thoughts very well.
I think one of the mistakes many people make is assuming that because there are overlaps of problems that are faced by people with disabilities and those faced by the elderly, the two groups are the same.
Some topics of discussion concern both the elderly and PWD. Euthanasia is one that comes to mind. In this case, people very often assume that to become old is to become disabled, and since disability is alwas a Bad Thing, maybe those people would be better of dead.
On the other hand, there are some needs that many elderly people have that they share with PWDs. For example, certain accessability accomodations. Having the option of sitting down would be benefitial to a PWD who has a chronic pain condition as well asan older person who tires more easiely.
So I think that on some issues, there is an overlap caused by factual comparability. In others, there is an overlap because prejudices against the elderly are also held against PWDs and vice versa.
One of the problems that is the same whether we are dealing with ageism or with disableism is that far to many people are content to see both groups as monoliths instead of acknowleging the fact that every human being is an individual. There are elderly people of every part of the spectrum from someone who has to spend all day in bed to those who run marathons. And people are not forever fixed in one place on the spectrum.
My gran was an incredily active woman. She helped my mom raise me for years, she was part of a hiking group into her mid seventies, she enjoyed crafts and cooking and was a very active participant in the lives of everybody she loved, as well as following her own varied interests. She was also a PWD, having had a hearing aid ever since I can remember.
When she got older, she also had a pain condition that became chronic. Her hearing worsened, as well as her ability to concentrate. She was tired a lot. Some of those things may have been “normal” age related changes. Others were specific to her disabilities. Both aspects were part of her life, and I don’t think it would really make any sense to try to assign them solely to on reason.
She was a person. An individual, with individual strength and weaknesses, likes and dislikes, interests and needs. She was an individual when she was seventy years old, going on regular hikes with her friends. She was an individual when she was eighty and enjoyed teaching me how to bake. She was an individual when she was ninety and needed a personal aide to get ready in the morning and at night. She was an individual when she decided to die at ninety-three.
I have two other grandmothers who are ninety and ninety.five, respectively. Both of them are completely different from each other and from my gran.
Huh. It’s almost as if the elderly are people, too.
I agree with those who said that many elderly people are being infantilized, and that this is something they have in common with PWD.
I know there is a very common memo that getting old is like “reverse growing up” The idea behind this seems to be that as people grow older, they may no longer be able to drive, to ride a bike, to run, to walk, to walk with a cane, to push themselves in a wheelchair, to get out of bed. This is regarded as the reverse of a child learning to walk. Also part of this memo is the possibility of needing help to get dresses, to take a shower or bath, to use the toilet. Again, this is regarded as an opposite of a child growing up.
The common denominator seems to be a (perceived or real) loss of independence as one grows older. The fact that the mind does not undergo this “reverse ageing” is often ignored.
This is another intersection with disableism, then. The belief that being independent in certain ways defined by society is a sign of being a grown up. And that needing assistance with any of those functions signifies a lack of adulthood. A person who, because of a disability, never learns to walk, might be seen as “lacking adulthood” from the start, whereas a person who becomes disabled later in life- by chance or ageing- is regarded as having lost some of zir adulthood. The conflation of so called “normal” abilities with essential personhood that is at the centre of so much of both disableism and ageism.
This gets into some really great issues. The conflation of aging and disability which happens in many societies is very interesting to watch, and it’s especially great to be talking about the fact that age is not necessarily disabling, and that some things stereotypically associated with aging can be seen in younger folks as well.
Commenters here have brought up great points about the devaluing of older adults and the similar devaluing of people with disabilities, something which becomes even more profound when gender and race are brought into the mix. I think I’d go for “patronizing” rather than “infantalizing” when talking about what happens with older and disabled folks, because that’s what seems to be going on, to me, the idea that we need to be told what to do and cannot be trusted to make decisions for ourselves. (Rather than the idea that we require care by society because of perceived helplessness.)
This is a really terrific point. And, speaking of flipping questions around; people with disabilities are constantly being given “helpful advice” on how to manage their disabilities…I imagine that a similar thing happens with older adults? (“You have to take this supplement!” “Go to taichi every day and your joints won’t feel so stiff!” etc.)
.-= meloukhia´s last blog ..The Jasmine Project: Growing Through the Fall =-.
I appreciate how thoughtful the comments have been about our post. The issues of patronizing/infantilizing reminds me of an experience I had at a BlogHer conference a few years ago. The panel asked the audience what part of who they are they felt they needed to be the most silent about. I said my age. I make a point of telling it because I think its important. I don’t “look” my age (67) so it’s often unexpected. And it sometimes makes a real difference in how I’m perceived. And often people, even people I know fairly well have trouble holding on to how old I am.
After I spoke at the conference, a number of women came up to me and talked about how brave they thought I was and about all the ways they used to hide their age. The vehemence of their reaction really surprised me at the time. (It wouldn’t now.) Among other things, I think there are some parallels between folks who hide invisible disabilities and the way many people work to hide aging. I think this a a piece of the issues of invisibility that Debbie and I hope to write abut in the future.
To answer the question at the end: yes, I suspect I do, as a young not quite 30 disabled person, get stereotypes that are similar to stereotypes of aging.
A lot of them are around death in some way. If my body slows down, becomes unable to walk, needs to lie flat a lot, people treat this like the stereotypical progress of aging towards death. If I have to stay in bed a lot I hear people act like I am dying. And people are always saying things like “I bet she won’t live to forty”. Few of them realize how insensitive or downright offensive this is. But old people get it all the time in similar circumstances.
Very thought-provoking post.
It brought to mind some comments I’ve received that were hurtful to me: “You’re too young to have all these problems,” my awful boss said to me, when I tried to ask for accommodation.
How am I supposed to respond to that? That’s such a judgmental and useless thing to say.
When I’ve brought up health concerns to a family member, she said, “Well, you are getting older,” as if my symptoms were a normal part of aging, which they definitely are not, and that I should therefore just accept these symptoms and not complain.
I’ve sometimes had the experience of being grouped in with older people during activities. I remember very distinctly at functions like wedding receptions and the like, being given a seat off to the side with some of the older guests who (it was believed) would not be participating in the dancing or mingling that was going on, even though I was in my 20s. It truly never occurred to anybody that I’d rather be with members of my generational peer group. And what made it worse was that the older women often saw me as someone to take care of. So there was a kind of co-mingling of ableism and ageism on the broader level, and then ableism within the group to which I was assigned.
My neighbors decided that because we have a spry elderly man in his 90s who could manage with them obstructing the block, I (a mid-20s PWD) should be able to manage, too.
It was worse than just conflating disability with aging, I thought; it was making that conflation and using it to say that my accomodation needs were invalid because an aging man didn’t need the same accomodations.
But then, on the whole my neighbors are a relatively prejudiced, closed-minded lot. I tried to explain some of how my disability creates access needs, and they listened just well enough to try to poke holes in what I told them. Needless to say, I do not like most of my neighbors.
These comments on disability/aging are really interesting. There is clearly a lot to say here and very possibly for us to write about.
Wow, great responses!
Ms. M, yes, that’s exactly what we were getting at.
Norah, yes. And your back pain might or might not get worse as you age. Heck, it might get better.
Gossamer, really good points about the different ways disability is viewed at different ages. And the phrase “falling apart” is a key one which we didn’t think to use.
Lauren, yes, especially about aging as reverse growing up. There’s a famous Shakespeare soliloquy which makes precisely the reverse-aging point, and underscores just how long this has been “common knowledge.” (For those who don’t feel like clicking the link, it ends “Sans teeth, sans eyes, sans taste, sans everything.” And of course it can be true; it just isn’t necessarily true.
Meloukhia, in my experience that kind of unsolicited advice goes to everyone who is perceived to be “in need” or “in a special condition.” Pregnant women and women with newborns also get a huge dose of it. It’s one of the basic manners lessons I wish was taught everywhere.
Amanda, I want to punch out the people who predict your lifespan in your presence and I think you’re dead right that older people get that relentlessly. (I’m not old enough yet to have experienced it myself.)
Sasha, one snarky/polite answer is, “How old would I have to be for them to be appropriate?”
Mia, I wouldn’t have thought of that aspect of the issue, and the minute you write about it it seems obvious. I’ve had an opposite experience, being seated with the young people because I’m not married, and the “adult” tables are for married people. I enjoyed it more than I would have enjoyed being with my age peers, and I was also rather taken aback and a little offended.
Kali, that is completely ridiculous, and makes our point all too well.
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