Tuesday, September 27, 2011

The Disability Hierarchy 6: Old Age & Treachery

An A&E nurse friend described with despair the sharp increase in elderly people being admitted to the Casualty Ward around the third week of every December. At first I thought perhaps she meant that factors conspired in the same way that road accidents increase during the week after the clocks go forward - perhaps a combination of dropping temperature and old folk scrimping on heating in order to free up cash for Christmas. But no, she explained, at this time of the year, many people would attempt to get their elderly relatives put into hospital, so they would be out of the way over Christmas. In some cases, chronic conditions would become suddenly and mysteriously unmanageable. In some cases, there would be “falls” and other injuries.

Our cultural attitudes towards older people are fantastically bad, and this cannot be divorced from our attitudes towards disability. I've always felt that the temporary able-bodied as a way to describe non-disabled people is inaccurate on two counts – the first is the problem with the term able-bodied, the second is that many people will live out their lives without disability. However, if we live long enough, eventually everyone will be treated as if we are disabled. Older people are discriminated against because they are seen as the most useless, unattractive and burdensome disabled people of all, even when they have no impairments.

And whilst this is a terrible thing for elderly people, it effects all of us who have got more than a few years life expectancy. Disabled children lose status when they become adults. The ageism that has the media favouring the faces, voices and concerns of people in their twenties and thirties in general is even more profound for disabled people. If you google for images associated with Breast Cancer Awareness, you'd think that breast cancer was something that exclusively effected young white and conventionally beautiful women (and you might think that the point of the exercise was saving women's bosoms rather than saving lives). Breast Cancer is an important cause to many people because everyone knows someone who has or has had it, but four out of five of those people will be post-menopausal. Meanwhile, while we accept most younger disabled people are capable of an active life, sometimes physically, but if not then socially, perhaps academically or intellectually, an active retirement invariably means a non-disabled retirement. I think there are a number of factors here.

First off, older people cannot play the role of tragic hero when faced with impairment. There's the obvious and understandable fact that just as death is a different thing at ninety than it is at nineteen, a ninety year old has less to lose when she acquires an impairment than a teenager. A younger person loses more aspects of their future; a younger person who becomes disabled might miss out on educational or work opportunities, even the opportunity to have children, all of which will be behind the ninety year old. This is not to say that the losses of the ninety year old are not significant – and there are ways in which it might be worse. But I think it is understandable that we consider the loss of becoming disabled as less severe when someone is very old.

What is much less reasonable is that we regard severe levels of suffering and impairment in old age as inevitable. In fact, while many of us will acquire a collection of minor impairments and health problems as we grow old, a gradual miserable decline of physical health and mental faculty is relatively uncommon. Most of us will die of cancer, strokes or heart attacks – most of us will go relatively quickly (not that these three always guarantee a quick end, but they often do). Life expectancy in the UK stands at around 80, so in the last decade of an average lifetime, only one in twenty-five people will have dementia and about half will have arthritis (although there's arthritis and there's arthritis – for some people it is a constantly agonising condition, for others it is little more than an episodic increase in aches and creakiness).

Alongside dismissing the impairments of older people as inevitable, not proper conditions in themselves and therefore not deserving of disability status, we congratulate older people who are fortunate enough to be healthy and independent as if they have wilfully defied ill health in much the same way we congratulate younger disabled people as brave and heroic just for getting on with their lives. Meanwhile, young and middle aged people feel the stigma of old age associated with certain medical conditions (e.g. memory-loss, arthritis, incontinence) and especially with medical and adaptive equipment. When resisting equipment, people who have moved beyond the phase of “I don't want to feel disabled” often have a phase of “I don't want to feel like I'm old”.

I've already mentioned mobility scooters, and the way that it is okay to both laugh about them and propose that their use should be restricted because they are associated with doddery old biddies who run amok, knocking into pedestrians and leaving damaged street furniture in their wake. Young wounded war veterans who use wheelchairs or crutches are very likely to be involved in drinking culture, but it would be absolutely scandalous to joke about our brave boys being a danger to themselves and others and proposing that their mobility aids be confiscated until they sobered up. In fact, it's much more socially acceptable to joke about old people in general than it is to joke about disabled people, in a world where these categories are conceived as mutually exclusive.

Older disabled people just don't count for anything. Their practical difficulties count for less – criteria for disability benefits and social care for older people are massively more complex and limiting than for younger people. Their suffering is often dismissed altogether. We frequently see the phrase “older and disabled people” to refer to the group who use disabled access and facilities, when “disabled people” ought to do (if older people need these facilities, they too are disabled). I strongly believe that the potent cocktail of ageism and disablism makes older people suffer more and die sooner than they might otherwise.

My Gran had chronic debilitating depression for years and was dismissed as a miserable old woman (which she was and one preoccupied with her health, but that didn't mean she didn't need help). I realise that many younger people with chronic mental ill health struggle to get much more help than an anti-depressant prescription, but I've never heard of any older person getting any kind of talk therapy (outside exceptional projects that make the news or journals). In general, people get happier with every decade of maturity; people acquire the psychological equipment to cope with things, they gain a better perspective on life's troubles and often move to a position of simpler needs, hopes and fears. Yet for some reason, old age is seen as a naturally miserable time. Doctors and even family members declared that my Gran was just old, despite her considerable suffering and sometimes very bad behaviour towards others.

Now Gran has dementia. She's not depressed any more. She is sometimes very frightened, but sometimes she is more jovial than I have ever known her, giggling about silly things – even laughing at what she forgets. She doesn't know who most of us are and gets confused about her closest relationships, frequently treating her daughter like her mother. She often doesn't eat without encouragement, she struggles a great deal with her medication despite having an all bells-and-whistles doohicky that dispenses her pills on a timer and makes a noise to tell her when to take them. She has falls, but she is no longer able to think to press her personal alarm when she's in trouble. But the doctor reckons she's not any worse than she was two years ago when she was still keeping rough track of her sixteen grandchildren's birthdays (those memory tests are perhaps the most unscientific diagnostic tool currently used on the NHS). My Gran was not a very nice person, but now she is fantastically vulnerable and if it wasn't for the few family members she managed not to alienate during her depression, I don't know what would happen to her. Even if she is no longer quite her self, there is a person there who is a long way short of losing the capacity to suffer.

A lot of people kid themselves that people will naturally look after those more vulnerable than themselves. Very many people operate that way; very many people have a sense of responsibility towards those around them who have less capacity to take care of themselves. But this is something we've learned and as such, it is something that some people haven't learned. As long as older disabled people are invisible to the rest of the disability rights movement, a big group of us – including our future selves – will be subject to some of the worst abuse and social isolation, at a point in their lives when it can easily get too late to make things better.

But hey, here's a positive and quirky story about an older disabled person and his owls


Indigo Jo said...

If you google for images associated with Breast Cancer Awareness, you'd think that breast cancer was something that exclusively effected young white and conventionally beautiful women (and you might think that the point of the exercise was saving women's bosoms rather than saving lives).

There was a programme that was broadcast in the UK quite recently about hereditary breast cancer, in which some young women from a family with a strong history of developing breast cancer at a young age pondered over having the gene test and the surgery. I couldn't help but notice that all the women shown were very conventionally beautiful, very feminine young white women, and the tragedy was laid on more subtly by choosing a family which produced mostly girls. Obviously, if they had chosen a less photogenic family, there would not have been the same tragic impact.

Anonymous said...

Hmmm... I have to think about this one, quite a lot to think about but worthwhile since I'm 55!
Great post!

Arno said...

Excellent post on an overlooked topic, and very well put.

Elizabeth McClung said...

Living in a retirement town, I often get caregivers (about 50%) who refuse to come back because I am not 80, I am their age and it frightens them.

I have never considered the disability of someone due to age to be 'less' in any way, though your views and societal views are ones I strongly oppose - the restirction of movement, of socialization, the limiting of freedom is not something embraced at any age, we simply rationalize that it is acceptable, in the same way we rationalize that putting older people into morphine coma's and killing them is okay, but doing it to those younger isn't because.....we are now the monsters we distain from WWII (hey, the disabled children the National Socialists 'assisted' into death has the same sort of limitations in society if not more, so why not accept that as good works?).

With the working age in my town at 70, and the 80 year old being a significant percentage of joggers, kayakers and active individuals, the idea of them not disabled was overturned in the US by the AARP, who was the group that got law in for those who are disabled (the 70 years olds, NOT the 30 year olds).

Younger disabled individuals simply don't have the economic clout a retired person with a half million does, nor do they have the social history and connections. WE, the younger disabled individuals matter LESS than an older grandfather of 22 who becomes disabled - more people honestly care, and do something.

I agree that doctors and society simply expect suffering and disability of older people, just not in THEIR family - it is a form of discrimination which shows how far from 'familia' we have fallen, and how little respect we have for those with life experience: I think of the Japanese who not only respect the 90 year olds, but integrate school children into special built high tech senior facilities. This week a group of Japanese are visiting the animal visiting program which occurs locally, as anything to improve the quality of life is of interest to that society.

So the agism isn't universal, even in Europe, just an anglo saxon cast off of the health-wealth ideals perhaps?

Mimi said...

An interesting and thought provoking post, thankyou. I've only just stumbled upon your blog and will link it to my new one, if that's okay.

My thoughts on this issue? We ALL become disabled at some point in our lives, either through accident, illness, or advancing age. How you treat and value those with disabilites will ultimately be revisited upon you when it's your turn. Call it Karma if you like, but I cannot understand this talk of 'the disabled' as if they are some alien race.

We are all 'the disabled' at some point. Fortunately for most, it'a a temporary thing...gosh that broken leg/knee recontruction/breast augmentation was incovenient, wasn't it? But YOU recovered. Most people's disabilities are permanent and they must deal with these 'inconveniences' each and every day of their lives.

Sorry...rant over. I'll be visiting your blog often.