April 19, 2012
Societies across the world will be facing many challenging situations over the coming years but one of the greatest may well turn out to be one of the most shameful; the hidden and unrecognized, wide scale abuse of our elderly. What does it mean now and what will it mean in the future for many people in the HIV generations that have been saved from an early death but may be condemned to a miserable last few decades?
Suspicious Senior Deaths Often Go Uninvestigated: Shoddy Practices, Lack of Standards Create 'Hidden Scandal': Propublica Dec. 21st 2011
Shocking Facility Elder Abuse Caught ON Tape: Hidden Camera Catches Workers Hitting, Taunting Dementia Patient: Newser.com April 8th 2011
Shocking footage shows elderly Alzheimer's patient being hit in the face, shoved into a wall and thrown over her bed: Mail Online28 June 2011
Elderly Abused at 1 in 3 Nursing Homes: ABC News July 30th 2011
Cruelty of the carers: Damning report into home help for the elderly finds neglect so appalling some wanted to die:
Cancer victim, 76, had to struggle to kitchen to heat up a meal -- because it was claimed health and safety rules meant home helpers could not operate a microwave:
Another patient, in her 90s, put to bed at 2.45pm: Daily Mail Sunday, Mar 18 2012
Caught on camera was tape after tape of footage of Norma being thrown into bed, screamed at, threatened with fists and a slipper. The video also revealed workers helping themselves to Norma's food and to money from her wallet: CTV News Canada Friday, Feb. 6, 2004
These are just a few recent headlines concerning abuse of the elderly. Believe me there are hundreds more and from every corner of the globe. At first I couldn't really believe it when I read similar stories here in The Netherlands but after a few minutes researching, I discovered that this is no local phenomenon. It happens in every country and on every continent. Even in Asian countries, where respect for the elderly is regarded as a cultural obligation, the rise of elder abuse reflects what is happening across the world. Why has society stopped caring? When did 'out of sight, out of mind' just become so much easier?
More Information: Taiwan's Elderly Suffer as Family Values Change
Historically, when times are tough, people start losing their jobs and their homes; debts are rising and there's pressure from all sides and eventually, the weakest links in society become targets for frustration. People lose patience with minorities and tolerance becomes a luxury. It becomes survival of the fittest and to hang with the rest. It seems that the best of human nature and support for our fellow man depends on stability, peace and prosperity.
It's taken me more than sixty years to realize that the human being is not a benign animal. Every day on the news the clues are there in the troubled areas of the world, for all to see. We've all seen in glorious technicolor what people are capable of doing to each other in the world's war zones and now modern media is bringing it to our dinner tables, it seems that you only need scratch away at the veneer of civilization and man becomes a vicious, snarling monster, capable of unspeakable cruelty. You just have to read a history book to know that it has always been so but the idea was surely that every new generation would be an improvement on the last!
We take some nervous comfort from the fact that it often seems far removed from our doorsteps but that's not the case; social brutality is never far away. It's in your town, on your street, maybe even in your own family and man's inhumanity to man is startlingly reflected in the way we're treating our elderly. It is nothing less than criminal behavior but fails to make the headlines every day; why not? Empathy, sympathy and compassion don't cost money, yet even those noble personality traits have seemingly been lost in the ideological struggles between corporate profits and personal survival.
As people living with HIV, we have a special interest in this area. We're not only more likely to reach old age these days but we're going to be seniors with medical problems that most of the rest of the population doesn't have and more importantly, doesn't understand! In many cases, HIV-related mental deterioration may play a role, leaving that person completely vulnerable to exploitation. If old people are being regularly abused and bullied in nursing and care homes, or by family and unscrupulous predators, how much more likely is that to happen to older people with HIV?
Statistically, we're much less likely to grow old with a partner, or a loving family, or good friends of the same age and it is more likely that we will live alone. Imagine the situation then, if you end up in a nursing, or care home. You bring with you a disease (however manageable); its by-products and a past that doesn't conform to the norms and maybe only one or two surviving acquaintances to keep an eye on you and you'll be cared for by strangers! That's an alarming enough scenario but when you then read about what goes on in more of those institutions than you would imagine, you can only shudder at the prospect.
GLBT people are notoriously reluctant to face their futures beyond sixty, let alone discuss their old age with others but with the improvement in health care for people with HIV, very many of us are going to be living a normal lifespan. Furthermore, during the past thirty years, HIV has created an enormous 'live for the moment' feeling amongst a community that was just glad to be alive and that feeling was reinforced by our narcissistic 'eternal youth' culture. Nobody ever really reckoned with HIV+ senior citizens clogging up the welfare systems but they'll have to now!
The bubble of HIV+ pensioners hasn't reached the elderly care systems yet: after all, HIV only struck thirty years ago but it soon will and then social systems across the world will be stretched even further and one may assume that the present culture of neglect and discrimination will only get worse.
As I'm rapidly approaching the age of dependency, I found it a pretty scary thought that I may end up in just such a situation myself. How on earth have we let this get this way!
More Information: LGBT Elders: Domestic Violence / Sexual Assault Resource Sheet (PDF)
Now I'm not one for creating ghettos of any kind but I am one for creating sanctuaries, for the vulnerable. Nursing, care and family homes should be precisely that; a safe place to live and enjoy the last years of your life. The fact that they're frequently semi-prisons, where inmates (I choose my words carefully) are bullied and intimidated and physically neglected or abused makes me scared, ashamed and angry at the same time.
In our own community, you could argue that our elders, having won gold medals for getting there, are more vulnerable than any heterosexual and non-HIV counterparts. Many were forced to live their early adult lives in secrecy and became accustomed to discrimination and stigma. When you're forced to live on the fringes, you learn not to stick your head above the parapet and not to make unnecessary waves. Finally, when it seems okay to be the person you were born to be and okay to live with a disease that's not your fault in your old age, you now run the risk of being tossed into the care home closet, with all its secrecy and dangers. Shame on us too, if we let this happen without safeguards!
"Sure I'm for helping the elderly. I'm going to be old myself someday." ~Lilian Carter
However, don't imagine that the LGBT community will necessarily rush to support its weakest links. There are ostriches who bury their heads in the sand amongst us too and just because you're gay, or HIV positive doesn't qualify you for automatic sainthood or a social conscience. I suspect that if you asked the average twenty-something gay man or woman about this subject, you'd find they aren't really interested in the plight of 60-plussers -- they don't even want to think about it because that would acknowledge their own mortality! That said, I didn't either when I was that age: forty seemed like the end of the world, never mind sixty! We're going to have to educate them then, because mobilization is essential before this evolves into a sort of unofficial ageist-cleansing. Telling youngsters that they'll be old themselves someday just isn't going to hack it I'm afraid but publicizing the plight of elder abuse victims and relating it to their own parents and grandparents just might!
Let's look at the facts.
The following quotes reveal the probable extent of the problem and although these are American statistics, non-Americans will find that the figures in their own countries are generally comparable. It seems that in the societies of 2012, 'silver' has gone up in price but down in value.
More Information: Fact Sheet, National Center on Elder Abuse: Elder Abuse Prevalence and Incidence (PDF)
The American Psychological Association's (APA) office on Aging, defines elder abuse as:
"... infliction of physical, emotional or psychological harm on an older adult."
But that definition doesn't really show the huge range of elder abusive behaviors. Bullying alone can take so many forms and physical abuse and neglect are multi-faceted. Furthermore, abuse is not confined to care institutions. According to the APA, by far the most abuse cases take place in the domestic home and environment. Often the perpetrators of abuse are family members or 'close family friends'.
Now most governments rightly raise their hands in horror if children are abused and have amended their laws accordingly but at the other end of the humanity scale, there are very few regulations strict enough to deter elder abuse.
In the Netherlands, a recent small study of residents in nursing homes discovered that about 20% had been bullied by other residents and gay organisations here have long pointed out that life in care homes for elderly gay people is like turning the clock back to their closeted youth. Christopher Plummer may have won an Oscar for trumpeting the joys of coming out at a later age but the reality is often starkly less attractive!
The author of the Dutch study also points out that cut-backs in government funding mean that there are less staff available and those who are there are less motivated because of the pressure on their own time. Social activities are scrapped and personal attention becomes limited. Seniors then become bored or resentful that they are being ignored or worse and like the population in general, they themselves tend to take it out on the weakest, or 'different' within their own groups. Group behavior takes over and social isolation can result. Again, it's not a huge leap to put ourselves in this situation!
More Information: New Protocols Help Tackle Bullying in Dutch Care Homes
Okay, if this is going on under our noses and is occasionally highlighted on the news channels, why is it being allowed to continue in this way and more importantly why don't we seem to care when it's patently obvious that it's an emotional issue?
First we need to realize that in most countries, certain people are legally obliged to report elder abuse. In North America, they're called, 'Mandated Reporters' but most countries will have some sort of equivalent and if they don't, maybe they should! These people include all staff in long-term care facilities for the elderly. Equally, employees of the social services, health and law enforcement agencies are obliged to do something if they witness abuse. In the domestic situation, anybody who has taken on the role of care or custody giver for the elderly can also legally be seen as a mandatory reporter. This applies to both actual abuse and suspected abuse and again, legally there should be no sanctions against the person who reports a problem and care should be taken to maintain confidentiality. Punishments for disregarding and false reporting are generally fairly stiff.
That said, realistically the real world is a different place and 'whistle blowing' has never been a popular means of disclosing information. In these days when keeping your job is absolutely essential, it may not be such a surprise that very few care workers voluntarily expose abuse in their workplaces. Many care homes are run by private companies who will almost certainly find ways of removing staff who betray their colleagues or administrators. It's morally wrong but when you consider that many care workers are paid the minimum wage and have to work long hours in a difficult environment, it's a big ask to demand that these people should be responsible for the crimes of others.
More Information: Elderly Care: Expert to Review Quality and Regulation
Very often, the pressures on these people are such that, they only have time to clean up, make the beds and issue the food. Social interaction with the residents, which should go without saying as being essential, becomes an unpaid, voluntary activity and unless you are devoted to your vocation, you're not going to put in the extra effort. So employees are frequently disillusioned, under-paid and over-worked. I'm not saying that this is an excuse for brutal treatment of the dependents in your care but there are a few mitigating circumstances.
"If wrinkles must be written upon our brows, let them not be written upon the heart. The spirit should not grow old". James A. Garfield
I'm still trying to imagine myself in that situation; as someone over the age of 65 with HIV, secondary illnesses and few surviving friends and family. It's frighteningly easy. Of course, the way of the world dictates that if you have enough money, you can buy the right sort of care. However, even this option is no guarantee of safety. More and more cases are coming to light of pensioners being conned out of their cash, belongings and savings by unscrupulous people. You must be able to trust those who have your medical and social care in their hands and very often people don't have a choice. Isn't it tragic then that this trust is so frequently abused!
More Information: Finding Them Easier Prey, Scammers Target the Elderly
Can we detach ourselves from this cycle of abuse and take people with HIV out of the equation? Realistically, probably not but we must do our best to see that bullying in care homes on account of someone's sexuality becomes a thing of the past. Too many seniors with or without HIV are ending up in situations where they have to deny who they are and maintain secrecy to survive socially. For them the circle is ironically rounded.
The ideal solution would be for HIV organisations and Gay groups to look into the possibilities of creating senior communities of their own, where safety would be more or less guaranteed. Many people will disagree vehemently with this idea of segregation, which we've fought against for decades. I maintain however, that people with HIV have been through enough by the time they reach old age and deserve to live in a caring and secure environment. I'm pretty sure that given the choice between that and ending up in a heterosexual nursing home, most people would be happier living amongst like-minded people.
The elephant in the room is of course, finance. In these days of financial crisis, it's not likely that local authorities or businesses will subsidize HIV/gay only nursing homes; they just don't have that sort of investment cash, especially when there's a functional system already in place. Apart from that, selling it to their voters means supporting a sort of positive discrimination and voters are just not going to buy that. We need the Elton Johns, Bill Gates and other wealthy gay-friendly philanthropists to start the ball rolling.
Protected living communities for gay people do exist in various countries but they can generally be counted on the fingers of one hand. Surprising considering that gay people are a better financial risk than almost any other social catchment but it takes a leap of faith for a housing complex owner to cater for one small group only. Then you have the HIV factor to take into account and the odds of finding such social benefactors are lessened even more.
Gay and gay health organisations need to push the agenda as hard as they can and that means pestering the media with stories of specific abuse based on sexuality or health status until they take notice. It sounds cynical beyond words but the more tragic the story; the more likely something will be done about it. Again, you can present the strongest case possible and it still boils down to who's going to pay for it all. Look at famine in Africa: Live Aid rightly got all the attention and all the support for Ethiopia in 1984 but the well was dry when it came to the next few countries to suffer. There's always a cash and sympathy limit and when one or the other runs out, the next deserving cause will suffer.
Nevertheless, what is happening in the world's care facilities for the elderly is nothing short of shocking and unacceptable: we shouldn't need to press for action, it should go without saying. However, people with HIV are well used to the sympathy game and know that nothing can be taken for granted when it comes to a fickle public. That's why, change and planning for the future of our HIV-positive senior citizens needs to come from within our own communities.
How to achieve the right sort of conditions for people to grow old gracefully is an organizational headache. The individual just doesn't have enough information, influence or money to even begin to implement change. Yes at 62 I may have a vested interest but the headlines from across the world don't lie. If it's not going to be you, it may well be an elderly relative or friend, who is forced into this sort of purgatory. I'm not fanatical about family (you can't choose them!) but it seems to me that there's a need for a return to the sort of culture where old age is cared for, admired and respected (however cantankerous grandma can be!). If we don't, we'll be tossing a generation of brave men and women onto the rubbish heap of history and leaving them to fend for themselves.
Finally, let's hope that these two Homer Simpson quotes never stop being funny because they've become bitter reality:
"Marge please! Old people don't need companionship. They need to be isolated and studied so it can be determined what nutrients they have that might be extracted for our personal use."
"Aw, Dad, you've done a lot of great things, but you're a very old man, and old people are useless."
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