ADRIENNE'S HIV BLOG – Hivine's Weblog

HIVINE is written by HIV positive women but still with a sense of humour

Archive for November, 2007

SPEECH FOR THE WORLD AIDS DAY VIGIL 2007 BLACKBURN CATHEDRAL

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                                                                                                                                                                     We are gathered together here tonight in this magnificent cathedral to both mourn and honour the lives of those men, women and children who have lost their lives to HIV/AIDS and also to raise awareness in the hope that future lives will be saved.  I believe that all of us here tonight share one thing in common. We are human beings who believe in the power of the Holy Spirit and the human spirit to overcome evil and to try to prevent unnecessary suffering in the world. AIDS is an unnecessary suffering, because unlike other illnesses, such as cancer, it is preventable.  Unfortunately, it is not unavoidable.

My name is Adrienne Seed. I am 58, I am a mother, an artist – some of you may be familiar with my work. I am also a counsellor – some of you may have even been my clients.  

I am also HIV positive.                                                     

I was diagnosed as HIV positive five years ago, and as you can imagine, it was a terrible shock for me, as it is for anyone, regardless of age, gender or ethnic origin – and in some ways, saying it out loud tonight, it is still a shock to me.  

Me? This can’t have happened to me –  But HIV can happen to anyone.  Anyone at all.  You may wonder why I have chosen to speak out tonight. I could have carried on living my ‘invisible’ life as a positive woman, in hiding, as so many of us do, hence the term invisible woman. I could have carried on with my career as an artist, as a counsellor, as a mother, living my day to day life and doing ordinary things, like singing in the choir, without anyone ever knowing or ever needing to know. And that’s exactly what I have been doing for the last five years, living a secret life with the burden of shame and guilt that HIV can inflict on those of us forced to live within its dark shadow, ever fearful of the stigma and prejudice that is still associated with this particular disease.  

But then something changed for me. It started the day our HIV social worker, who unfortunately we no longer have around to help and support us, said to me, “The trouble is Adrienne, people like you don’t have a voice.”  I am sure that Geoff, our choirmaster and great leader, would be in total agreement with the fact that I don’t have a voice and probably, so would the rest of the altos that I stand next to in the choir and frequently send out of tune. But speaking out about my HIV status has helped me to find my voice – although Geoff at this point, having heard me sing, would probably advise me to go and put it back where I found it. 

But somebody has to speak out and some of us already do, although I appreciate the fact that not everyone can. Therefore, I have taken it upon myself tonight and for the unforeseeable future now, because after tonight there is no going back, to become a voice for the invisible women out there who cannot speak out, either for fear of stigma and prejudice, fear of losing their jobs, or for fear of hurting their families.  

Fear – fear is a word all too often associated with HIV. People are frightened of us; we are a threat, a danger to society, contagious, a walking time bomb within their midst. The thing is, we are not the ones who are a danger to society, the opposite in fact, unlike the alleged third of the population who don’t even know they are infected and are therefore unwittingly passing the virus on. We wear our red ribbons once a year on World AIDS day in order to remind ourselves, and the world, that HIV/ AIDS is still an ever present threat. The red ribbon has become the universal symbol for HIV and AIDS.  

Scarlet Ribbons – some of you, who are old enough to remember, might recall that particular song. I do, because my dad used to sing it to me when I was a little girl. In fact, the song was first published the year I was born in 1949 before AIDS had reared its ugly head.  The words go something like this – and don’t worry Geoff, I’m not about to break into song, although perhaps it would be a good song for the choir to sing for the next vigil. 

I peeked in to say goodnight, when I heard my child in prayer
Send, dear God, some scarlet ribbons, s
carlet ribbons for my hair.

All the stores were closed and shuttered, all the streets were dark and bare
In our town no scarlet ribbons
Not one ribbon for her hair

Through the night my heart was aching, just before the dawn was breaking
I peeked in and on her bed i
n gay profusion laying there
I saw ribbons, scarlet ribbons
Scarlet ribbons, for her hair

If I live to be a hundred I will never know from where
Came those lovely scarlet ribbons
Scarlet ribbons for her hair.

When I was first diagnosed back in 2002 and really sick, my mother prayed to God to help her daughter to find the courage and strength to get through it all. Somehow, I did find the strength and the courage, although, like in the words of the song, I will never know from where – and I can only presume that my mother’s prayers were answered.   

Now, I see the scarlet ribbon, the red ribbon as a symbol of faith and belief in the power of good over evil. Anyone here tonight who has lost someone, or is caring for someone with a terminal illness, or fighting a terminal illness such as cancer themselves, will know the terrible toll it takes on the human spirit, as well as the body. The difference between HIV and other chronic diseases, such as cancer, is that you cannot catch cancer, but you can catch HIV. So therefore, in some ways it is a preventable disease, which, even without ever finding a cure, could be wiped out, simply by the raising of awareness. That is the message I want to get over tonight and why I am speaking out and by doing that, by helping to raise awareness, if I can prevent even one person from contracting this terrible disease, I will feel like I have done something worthwhile with my life – and with my HIV.   

Remember – HIV is not selective. It can and it does AFFECT and INFECT anyone – man, woman or child. The statistics show that more and more women are contracting HIV and I am merely one of those women who make up that statistic – and here tonight to prove it.  

The very fact that I am here tonight, means that I am one of the lucky ones, because unlike in some countries, I have had access to medical care and medication, without which I would not be alive and standing here tonight to tell the tale. From the word go, I have received amazing support from the G.U.M. clinic at The Royal Blackburn Hospital, from the nurses right down to the secretary and in particular our wonderful specialist Dr Guyed, who have all treated me with the utmost respect, Unfortunately, people with HIV are not always treated in such a respectful manner, especially in the old days when ignorance ruled. 

There is a bright side however, to living with this disease. It has afforded me the opportunity to meet some incredible and inspiring people, who I can honestly say it is an honour and a privilege to know. People like Catherine for example, who has been and is continuing to be, a total inspiration to me and who has given me the strength to do this tonight. In fact, if I hadn’t of met her, I probably wouldn’t be standing here now, trembling and choking up before you – so, thanks a bunch Cath!  

I also bless the day I walked through the doors of Body Positive in Manchester and could thereafter bask in the inspirational glow that Phil somehow manages to radiate with her smile and her laugh – note, I deliberately didn’t describe her laugh as infectious, which it undoubtedly is, as us positive folk are sensitive to certain words like infectious, and tend to avoid them at all costs.  There is one great thing that HIV does for the people who have to live with it, and that is, it unites us, no matter from what background, sexual orientation or gender. We have learnt, by having this disease, to accept others for what and who they are and not for what they have – in both senses of the word.  By accepting each other in this way, we are able to offer each other unconditional love and support.  

Unconditional love – maybe that is a message we can all benefit from and take home with us tonight. 

Thank you for listening.

Sofa to go

 

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                                                                                                                                                                           I recently took part in the Expert Patient programme run by Body Positive North West, which is the self-management of a long-term health condition for people with a chronic disease. The words chronic and disease make it sound frightening and depressing, which HIV is of course, but the course in itself was fantastic, mainly down to the amazing people who both run and frequent BP. Far from being depressing, I for one found it totally inspiring as well as being an uplifting experience, as we spent most of the time laughing.

We also cried a bit, learnt a lot from hearing each others story’s and also dealt with practical issues such as how to cope with the side effects of the medication, fatigue and depression etc. To help us to overcome these typical HIV hurdles we were encouraged to make a weekly action plan, which was both attainable and sustainable. For example, on days when it was all just too much, and we’d all suffered from those, we came up with a list of various ways to deal with it. At the top of the list, proposed by Cath, was to have a sofa day, which included for her the watching of Jeremy Kyle.  This may not be everyone’s cup of tea and I personally would prefer ‘Vivienne Vyle’ Jennifer Saunder’s spoof version of the aforementioned ‘counselling’ reality show – but each to his or her own.

Sofas, in one way or another, have become an indisputable and necessary part of our daily lives. Philip and Fern for example, would be lost without theirs as would Richard and Judy. There is also something called the ‘Pink Sofa’, a cyberspace version of the everyday sofa, which serves as a lesbian website and chat-room. Maybe we need an HIV cyberspace sofa? I wonder if they have any going cheap at DFS?

Just as we need them, sofas need us and every sofa probably has a story to tell. Take the psychiatrists couch for example. As we approach the festive season, we are continuously bombarded with adverts for sofas. Various celebrities, usually unfashionably on their way out, lounge on them and tell us, order now and you can have this one in time for Christmas or sit on this one in the New Year – or pay for it some time the unforeseeable future. Then, of course, there is the ‘oh no, not another sofa sale’ advert to drive us all mad. Sofas are being flung at us from every direction.

I have always held a theory that when couples start looking at new sofas, there is usually something amiss, like a pending divorce, then it will be a case of who gets the sofa. When I was first diagnosed, for some reason I had to go out and buy some new sofas. Of course, now I am a  counsellor I am forced to consider the symbology of the sofa at a deeper level and I have come up with the following. Aside from being extremely comfortable as you can stretch out and rest your weary head and feet at the same time, they are usually conveniently positioned near the telly. All the better to watch, ‘I’m a celebrity get me out of here’ or the ‘X Factor’ of course. But more significantly, sofas, as a general rule, tend to have arms. This is highly symbolic as the arms are subliminally offering the equivalent of a much needed hug, something which positive people are often denied and in great need of.

We can then dig even deeper and look into the types of sofas we choose and why we choose them. A bit like breeds of dogs resembling their owners – or vise verse. Ask yourself, do you look a bit like your sofa, or is your sofa starting to look a bit like you? I know mine is starting to look uncannily like me, because it’s beginning sag and if you poke down the sides or under the cushions, I might find things I’d lost years ago. A bit like the old joke of finding a sixpence under one of your bosoms, or not being able to do the pencil test to find out if your bottoms dropped because it has already dropped too far.

Therefore, your sofa can say a lot about you.  Does your sofa actually have arms, or is it armless? An armless sofa such as a futon is Japanese, so not armless then, the opposite in fact, which means you wouldn’t want one of those in your prisoner of war parlour. And talking of wars, the chaise lounge is French and only has one arm, so say no more.

I remember my mum once bought a new three piece suite which once delivered and squeezed into her tiny house took on epic ‘Alice through the looking glass’ type proportions. When she sat in the huge arm chair she virtually shrank and disappeared and her legs didn’t reach the floor. She was so frightend of the enormous sofa, she refused to get up the next morning and we eventually we had to send it back.

A final note of caution. Beware and be very careful indeed if your action plan involves a sofa, because there is also something known as the ‘couch potato’ and we wouldn’t want to become one of those.

TRINNY AND SUSANNAH UNDRESS THE POSITIVE NATION?

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I see ‘Pinny’ and Susannah were at it again the other night undressing the nation and giving us all a complex. Who do they think they are, bossing us all around and telling us what shape of fruit or veg we resemble? They are hardly shining examples of the perfect female form themselves, are they? That Pinny is practically anorexic and her apron (or trinny) would definitely slither off her non existent hips before she even got to the dishing out the chips stage and let’s be honest, she looks like she’s never eaten a decent, honest to goodness chip in her entire life. She’s obviously got a chip or two on her bony shoulders though and was probably bullied at some posh all girls boarding school, because she is little more than a bully herself.

“You madam are obviously a brick,” she banishes some poor woman off to the builder’s yard, along with the huddled pillars and columns and leaning towers of Pisas. Next it was the grocers – “Apples and pears over here,’” she snorts poshly, although maybe she meant the builders yard but had resorted to her true origins by speaking cockney rhyming slang. 

One by one off the poor women were banished, heads hung in shame, cellos to the string section, goblets and vases to household and chinaware. Rasberry ripples, ninety nines, cornets and giant Magnums over to the Mr Whippy van. Maybe she got confused again and intended the cornets to go to the orchestra section.

But confused or not, the lines of women meekly followed her orders and allowed themselves to be rounded up and herded into their various groups. The very worst shape of all to be, according to the bossy twosome, was a bell. If you were a bell, and pardon the pun, you might just as well go and hang yourself. Although, looking on the bright side, being a bell could come in very handy as we rapidly approach the festive season. You could ding dong merrily on high to your heart’s content and nobody would notice. This particular bell woman however, was mounted on a pillar for all to behold whilst Trinny fondled her behind, practically rubbing her nose in it and describing it as ‘delicious’. What kind of bizarre behaviour is that and what message is it sending out to the nation you may well ask. Not content with merely insulting people they are then literally rubbing their noses in it.

Why on earth would women be party to this kind of treatment, bullied then herded into groups according to what musical instrument or ice cream they resembled? All of the especially chosen women, the fatter ones resembling statues of washed out teletubbies, were then made to stand on pillars in their pale blue leotards and tights like those mime artists you see in Amsterdam or Barcelona who suddenly come to life and make you jump.

Maybe Pinny and Susannah could be persuaded to undress the positive nation and decide our shape and dress us according to what medicine we take.

“Now, I can see you are on Abacavir, because its all here at the back, isn’t it dear, huge arse and no tits. You, yes you over there, third pillar along, you have a delicious arse, but no tits whatsoever. I suggest you switch to a combination incorporating Tenofovir with matching accessories, but not for heavens sake from Primark. You there with the bad complexion, you must be on Zerit.  You know you can get something from your doctor for zits. And you madam, you must be on effavarinz because no one in their right mind would wear that psychedelic hippy number, all that went out in the sixties and if you don’t mind me saying, you are obviously still hallucinating. Now you my lovely are on Truvada, the colour blue so matches your eyes and detracts from the fact that you look like you might slip through a grate. Now I spy a delicious looking bottom on pillar seven, so I presume you haven’t started on the medication yet?”

God knows what ice cream, musical instrument or household item I resemble, but maybe Pinny could enlighten me, at least on how to keep my apron from falling off.

TROLLEY DOLLY

 

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                                                                                                                                                                         I woke up with a weepy eye yesterday in both senses of the word. HIV, or maybe it should be H-eye-V, as well as the other horrors it is known to inflict is also known to cause rapid deterioration of the eyes, but then, so is old age. I know that at 58 I am hardly in my dotage, it just feels that way sometimes and yesterday was one of those days and it was a combination of the two things that got to me. 

HIV and old age, or having it at any age for that matter, can cause one to feel very depressed at times and I don’t know which is the worst.  There are various ways to cope with depression and through my work as a counsellor I have found there is a common theme for women which revolves around retail therapy. Not retail therapy as we know and love it however, as in the buying of clothes and make-up etc. This is retail therapy with a difference and involves hardware shops such as Focus or B&Q. 

The trick is to choose an out of town shopping centre or retail park , preferably surrounded by depressing pylons or wastelands to all add to the gloom and possibly a caravan where you can get a greasy bacon butty afterwards, which will make you feel even more depressed.  The bigger the retail park or shopping centre the better, because this will afford you the added benefits of a choice of carparks to sit on if you choose the second option of just sitting in your car and weeping.  

If you want to go the whole hog however, you make yourself get out of the security of your car and grab yourself a huge trolley, then wander aimlessly up and down the aisles numbed into submission by the subiminal piped music.  Humming tunelessly, up and down the alleys you go at a very slow pace, looking at all the things you don’t need and unlike clothes or shoes, don’t really want. This works quite well I’ve found until you get to the storage items and this is where the theory goes to pot, because I for one, feel that if I buy some of those shoe organising boxes or sock sorters or even a tie rack and I don’t wear ties, I can some how get my life back in order. The same goes for cleaning items such as mops and plastic buckets – if I had a new mop I might get round to cleaning the kitchen floor. A new broom sweeps clean and all that.

If you are financially challenged like me, you can’t afford to buy anything anyway, so you put the various storage items or plastic buckets piled high in your trolley, walk them around for a bit as if you are taking a child for a walk in its pushcahir to give its poor mother a break, which can also cater for the empty nest syndrome if you happen to be suffering from that, then when you are fed up, you go and put them all back. If only one could have done the same with one’s children.

If you are a sensitive, considerate person, like a dear friend of mine, who if she is reading this knows exactly who she is, you will dutifully put them all back in the rightful places. But if you are more like me you will deliberately deposit them in unlikely places where they shouldn’t be. This is actually good shopping psychology as far as the shopping outlet is concerned and one which M&S for example apply on a daily basis, believing if you change things round every day, shoppers will be shocked out of their routine and buy things they weren’t really intending to. This can all add to the excitement of food shopping I suppose, but I just find it to be time wasting.

If you are the rare kind of person who is feeling energetic as well as depressed and also harbour a secret passion for Dale Winton, you can up the stakes a bit by playing your very own game of ‘Supermarket Sweep.’ Set yourself a challenge, for example – today I have to find ex number of bedknobs, doors and broomsticks in ex amount of time. A simpler version of course, would be just to watch the video of the film.

If this all sounds too much like hard work and all you really want to do is get away from everyone and wallow in your own misery, you can simply sit in your car on the car park and have a good cry. I have another friend who is also a counsellor and often indulges in this kind of behaviour, so what does that say about counsellors? It’s like the theory that all dentists have bad teeth and hairdressers all have bad haircuts. If I call him and sound depressed, he sighs and asks me what carpark I am on. Then, because he is a counsellor, he might ask me what I put in my trolley and why – and if he wants to dig even deeper he would ask what would I keep if I had the choice and what would I throw out. Like the million dollar counselling question, if you woke up tommorrow and everything was OK how would you know?

I wonder if that’s where the expression off your trolley comes from? Maybe between us we’ve hit on a new therapy to outdate CBT and TA. Ours would be known as B&Q therapy or RCT regional carpark therapy.

I heard on the news today that even lobsters get depressed and suffer from stress. Apparently, if that is the case, all the stress goes to their tail and they don’t taste as good. There must be a moral there but I can’t quite think of it. Any suggestions? 

There’s a book called, ‘Counselling for Toads’ – how about, ‘Counselling for Lobsters.’

CHILDREN IN NEED

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I have been watching ‘Children in Need’ and the amazing amount of money raised by the British public every year. Although this makes me feel very proud to be British and I know the money side of things is hugely important, another part of me thinks it is merely a salve to the nation’s conscience.

In regard to children and HIV/AIDS not enough is being done as the statistics prove and these shocking statistics alone should be enough to prick anyone’s conscience. Did you know for example that every minute of the day a child under the age of fifteen dies of an AIDS related illness and that each year 640,000 children are infected with HIV. Without treatment half of them will die before their second birthday.

Every fifteen seconds, less time than it will take you to read this, a young person between the ages of 15 and 24 is infected with HIV.

Nearly 90% of new child HIV infections occur in sub-Saharan Africa, but the number of such infections is increasing in other areas, particularly in Asia. In Cambodia, a country badly affected by the fast growing AIDS epidemic 3% of all pregnant women at ante-natal clinics are testing HIV positive. The disease now threatens an entire generation of children in Cambodia and increasing numbers are being orphaned or abandoned. A government-run orphanage in the capital Pnom Penh has become a dumping ground for many of the growing numbers of babies and young children born HIV positive.

Abandoned – dumping ground – That says it all and proves that the stigma and prejudice asociated with this disease still exists. I have a Dutch friend who frequently goes to Cambodia to work as a volunteer at that same orphanage and do you know what her role is? To cuddle the babies and children that no one else will touch, which goes to prove that it is more than money that these children need.

You can help raise awareness by signing up as a supporter to ‘The Stop AIDS in Children’ campaign run by the HIV/AIDS charity AVERT as part of its work to avert HIV/AIDS worldwide.

http://www.avert.org/stop-aids-children.php

MAGIC KNICKERS

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Barb’s comments about Magic Knickers and reading an article in this months ‘Positive Nation’ about lipodostrophy, set me off grieving once again for my lost behind. Apparently, I am not alone in this sad lament, but other positive women out there are also worrying that their lack of a reasonable sized behind may cause people to realise their status. 

Status used to mean ones position in society, or keeping up with the Jones, but now it’s the size of Mrs Jones’s bottom that is to be envied rather than the colour of her new curtains. I am not so concerned about the interior decorating aspect of the matter, rather more the fact that due to a lack of a bottom my pinnies keep falling off when I am cooking and tripping me up, which is definitely a health and safety issue, especially if I am wielding a red hot chip pan. 

Lipodostrophy, or ‘lippo’ as it’s known in the trade, is unfortunately a common problem for HIV positive women, although to me, putting on some lippo still means applying a fresh coat of lipstick – like in the good old days and in the words of the once popular song – ‘lipstick on my collar told a tale on me’.

They couldn’t write those words nowadays. It would have to be lip gloss or lip plumper on my collar, which wouldn’t have quite the same ring to it somehow, or the same implications I would imagine, as plumper would need a different type of detergent or stain remover to get rid of of it completely, signifying, as my mother always told me, that your sins will always find you out.

Anyway, Barb enlightening me about the wonders of ‘Magic knickers’ was a complete eye opener for me, because I’d never even heard of them. I’ve heard about magic mushrooms and the magic roundabout of course, but magic knickers?

“Haven’t you been watching Trinny and Susannah?” she screeched down the phone in total disbelief. 

Well, no actually, but I thought I’d better keep myself informed for the purpose of this blog, so I sat through ‘Undressing the Nation’, which tonight centred on the fascinating subject of Man boobs. In the name of further research I then felt justified in typing ‘knickers’ and ‘bum enhancements’ into the google search bar and you can imagine what came up in relation to bums. I then made matters a hundred times worse by typing in ‘HIV bottoms’ and predictably was offered a lot of advice for safe gay sex.

I quickly refined the search back to ‘underwear’ and ‘bottom enhancers’ to find this – ‘If you’ve always dreamed of having a J-Lo styled derriere, why not try these silicone buttock pads, less painful than an implant and moulds to your body’s temperature.’    

All very well, but what if you are going through the menopause as in, ‘is it hot in here or is is me?’ and they melt – or cooking chips and they slide off into the chip pan.

Aside from Magic knickers, Trinny and Susannah  also advocate something called a bum lifter and I quote – ‘Like most of us, Trinny’s bum sometimes needs a lift.’

Why only sometimes one wonders? Is it variable like the weather. Does she sometimes have one and sometimes not, or is it like how I feel due to the medication, sometimes high and sometimes low? I will have to look at her with new eyes in the future. If she practices what she preaches and wears a bum lifter, I’ll bet she doesn’t have trouble with her pinnies falling down, in which case,  maybe they should change their names to Pinny and Susannah.

Surfing on the worldwide web there seems to be a lot of competition where buttock enhancers are concerned. One wholesaler professed that their product would lift your buttocks sky high. Well, I wouldn’t go that far. However, the prices to ship them from New Zealand were exactly as they professed – sky high.

Anyway, for those of you who wish to benefit from my lengthy research, I did chance upon a nifty little number called the ‘Wonderbot’, which seemed to fit all requisites. However, any positive women out there in need of such an item of underwear due to the dreaded ‘lippo’ can at least console themselves with the fact that they are a lippobottomus as opposed to a hippopotamus and can take heart in the word’s of Freddie Mercury’s encouraging song – ‘Flat bottomed girls you make the rocking world go round.’

Or maybe it was fat – in which case forget it!

LEST WE FORGET

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Today is Remembrance Sunday and as usual I sat watching those brave men and women proudly marching through London with a huge lump in my throat, remembering my dad and my granddad, who were both awarded medals for bravery. My grandad was awarded the Military Medal for bravery in the field in the First World War and my dad was a navigator on the Lancaster bombers in the Second World War. How brave they must have been and I hope I have inherited some of their courageous genes in regard to fighting for a worthy cause, which in their case was freedom from a terrible dictator.  

I know I cannot compare the two issues, but in regard to HIV/AIDS, a Hitler-like dictator in its own right, there is still a war to be won in that it is determined, if it has its way, to wipe us all out and not only the ‘undesireables’ in Hitler terms, as was once thought, but the whole planet.

If AIDS is not controlled or a cure is not found, it has the possibilities to do just that, so we can’t sit back and be complacent – and neither is it any good only dragging the subject up once a year on World AIDS Day. It has to be an issue that is regularly addressed and brought to public notice, especially in regard to our young people, who need to be constantly aware of the dangers.

In the old days, sex for women was often thought of as something that they were obliged to do and even if they didn’t want to, they were told to lie back and think of England. In terms of the law, witholding sex from their husbands was not complying with their marital duties and therefore judged worthy of a divorce. In some countries these laws and beliefs still apply today and thus the spread of HIV/AIDS is rife. 

The red poppy is a symbol to remind us not to forget – and so is the red ribbon .