Criminalisation of HIV & the SERO Project

Here are two  U.S. organisations that can sometimes offer legal help and can certainly offer advice and support for those facing prosecution for HIV transmission and/or failure to disclose a HIV+ status.
If anyone has any further links to resourses on this, especially in the UK, please post them below as a comment
http://seroproject.com/
http://hivlawandpolicy.org/resources/view/563

( Thank you to Laurel Sprague for these links)


I realise there are some, or even many , both HIV positive and HIV negative who will not like the campaigns to de- criminalise HIV. And not understand why I post so much about supporting them.

Often because they acquired HIV from someone, often a long term partner or even a spouse, who had HIV, infected them without giving them the chance to have the knowledge to know they had to protect themselves, or know others for whom this was the case.

I understand this

My husband of over 20+ years passed HIV to me. No he did not know he had HIV, but he did know he had been unfaithful and had not fully protected himself and come home to me and not had a test and had sex with me without any attempt to protect me ( just in case)  and I did not know to have a test or  have a test, not that time anyway, I had in the past.

I had not been tested for HIV and all STIs regularly for many years  because he had ever said he was unfaithful, but I was tested regularly - just in case - up until my menopause. I don't know why hitting the menopause meant I stopped feeling it necessary to get tested, I think maybe I saw it psychologically as marking us getting older and ageing together and if he had not been unfaithful up to then I simply thought it would never happen now. And I had always been faithful and knew I always would be.

But menopause held another factor in why I acquired HIV. Because I had long only used barrier contraception as I no longer wanted to take hormones or have anything inserted in my body. However when I reached menopause I no longer saw any need for condoms.

Although he did not know he had acquired HIV, it could be argued that he did not he had put himself at risk and hence me and had not informed me of that risk. And some even in these circumstances have tried to get a prosecution and indeed I was urged by some to try to prosecute my husband. Many saying to me he knew he had taken the risk and I did not and how could I be sure he had not lied to me about being HIV poz, as he was a seaman he could have been tested abroad and if he had lied about being unfaithful he could have lied about knowing he had HIV and even if he had not with a good lawyer I could perhaps have argued he knew he had taken a risk .

Very early on in our diagnosis I thought deeply about this and the suggestion I should try to prosecute my husband and met a few through my local charity, and on line, who were trying or had tried to prosecute their partners in similar circumstances.

But I decided, and of my own back as at that point I had never read any of the information re criminalisation of HIV, NOT to do this.

After careful consideration and apart from my own circumstances, the feelings of anger and betrayal and deep sadness I had at first,   I found my view were that  criminalisation of HIV is counterproductive to eliminating stigma, prevention and testing and prevention and stigma, testing is what I am most concerned about, right from the first day of my diagnosis.

And of course I love and know my husband well and as I have stayed with him, know why he did not tell me about the risk he had taken, and how and why  he felt he had no option but to not tell me, and I have known and shared the pain he has gone through that he passed HIV to me, whether he had any idea he had it or not, he has suffered .

And don't forget he has HIV too, about 4 years ago he was days from death with HIV caused PCP and other infections, he now has Prostrate cancer. He is suffering, he is not a criminal.
Nor are any of us who live with HIV

But even if I had not and even if he had known, I quickly realised that there are many, and very complicated, reasons for everyone HIV+ why someone may not disclose and a huge part of those reasons are much to do with the stigma discrimination and fear of criminalisation that all with HIV live with and that surround HIV. These are not all the reasons, but many of the reasons actually have their base in those areas.

So I decided criminalising anyone with HIV is ultimately criminalisation ANYONE of us that has the HIV virus

And that it will not help us - except on a very person level of revenge and perhaps closure for what specifically happened to us.

But on a wider level it will achieve nothing except further stigma, further infections and less testing.

Yes perhaps there is a case for prosecuting those very few that knowingly, deliberately or recklessly take risks that may lead to another acquiring HIV, and that intent, or sheer recklessness can be proved beyond doubt. There is evil in every group and some may deserve to be prosecuted? but I am not sure words like deserve, or even blame is helpful to be used in general when it comes to HIV.

But if the law in any country allows for that then it must be very clear and defined as to when a viable prosecution can be made, and perhaps like in the UK it not be under a specific law for HIV transmission and disclosure, but under laws that apply to anyone that deliberately or recklessly harms or hurts another. But even this could be counter productive.

It is about the well being of the whole, the majority, not the individual or individuals personal situations I believe we have to consider here.

Because I just do not believe the majority of people that live with HIV, even those who infect their partners knowing they have or they may have HIV, are evil, cruel or even always thoughtless people.

I simply do not believe that there are many at all who want to be responsible for passing on to anyone a potentially life threatening and life changing virus. And I certainly do not feel that those that have sex but do not pass it on, use protection, or are sure that their infection is under control i.e on treatment and undetectable yet do not disclose are evil or even criminal either.

I think like all with HIV they, like us all, are victims of the huge stigma that surrounds this virus.

All who live with HIV, however well they cope are caught up in huge and often scary, social, emotional and personal, pressure or even peer group pressure and in some cases – many woman HIV+ all over the world have faced this and men too – a fear of or actual violence towards them should they disclose or ostracisation from their communities, families, society, fear of how their life will change if it gets known they have HIV, their jobs, income, accommodation, access to their children..... the list is very long of the reasons why someone many not disclose their HIV+ status or indeed actually have unprotected sex even with a very loved one and perhaps pass HIV to them, them is very long and complicated.

And it has to be remembered that the incidence of mental health issues, depression, etc of those that live with HIV are FAR higher than the average population.

This is not that those who randomly acquire this virus are necessarily more prone to mental health issues. It is a reflection of the often constant and terrible stress, conflicts and mental strain that living with HIV involves for many people. Much of theses stresses have roots in stigma, and fear and of course living with a potentially life threatening illness. Even now, even since the newer ARV drugs, people still die

    A stigma that does not surround, any more at least,  many other illness, pathogens, conditions, and should not HIV. And criminalising all of us who have HIV will not lessen this, for individuals or us all, it will only increase it.

Yesterday I spent the day with some people who have Hep C, which may - and I did think this -  be thought to be the same in terms of disclosure and carry the same stigma. But while some cant disclose most have no problem with saying they live with Hep C, and one who is co-infected said they can and do tell anyone about having Hep C, but they can not be open about HIV.

Hep C is not criminalised. I think this is part of the explanation of the difference for many of those living with Hep C. Just like HPV , another potentially fatal virus that is sexually transmitted it is not criminalised or stigmatised in general.
HIV carried great stigma and criminalisation is counter productive to treatment, prevention, testing........just about everything regarding HIV.

I am not alone in believing this.
Much social research has been done that point to this being the case.

Also I know, online and have met many personally, who were infected by their partners and some knowing they had the virus, that may have wanted to prosecute and were very angry, wanted revenge, retribution, personal closure and wanted to do it via the law, and thought to prosecute was a way of ensuring that it did not happen to others or it happened less, that now support this campaign to de-criminalise HIV, all over the world.

I don’t ask that anyone agrees with me. And I understand all too well the personal anger and feeling that you want them to suffer or you want your day in court. For it to be publicly proved by law that you were a victim when you were infected or felt you were at risk of being infected by lack of disclosure by your partner for whatever reason, To be exonerated of all blame that society puts on you for your own infection and by the use of law. And of course many other reasons why you may want your day in court.

Just believe me I was very angry with my husband and felt all these things.

But it is my view that NONE of us should be victims of blame for having this virus, which it is a virus, not a thinking entity and by criminalisation and blame it perpetuates stigma and thus perpetuates the virus being able to thrive and be passed on. As the virus is more likely to be passed on to others in a atmosphere of stigma, fear and blame.

I won’t go on further
I don’t expect anyone to agree with me.
All I am asking is to try to put your own personal circumstances aside, leave your own pain and hurt for a while and read the many arguments for and against criminalisation of HIV.

And decide what is best for everyone, the whole population of the world that are HIV+ or potentially could become HIV+.

My Tribute to an Inventor of the PC - John Reed

My brother John was part of the IBM team that invented this piece of Technology you are reading this blog through - what an achievement - so few can match this?

No one really can know why John - my brother - committed suicide today I guess

- but having grown up with him I think I actually may have some idea!
But worried to tell his family -

But probably I am wrong as no one really knows but him.

But I do not know if anyone who was not there could understand what we went through as children .
And it does not matter - what matters is his relationship with them.
His note apparently was brief, part of it was

'I love you all '


And that he loved them is all that matters in the end
_________________________

If anyone has the time to look at the videos on his site before they go down .

As he is not here now to service his site - in his memory I will see if I can keep it on

http://www.reedfamilyalbums.co.uk/


There are pictures and videos - Videos here:
This is a happy one of him jetskying : http://www.reedfamilyalbums.co.uk/ReedFamilyAlbums/videoalbums/1970/Cine1.wmv

- that site says it all really about his life from the 70s onwards.

Despite the traumatic childhood both he and I to a degree, went though, he led a full life and very useful and productive life . But I think I do have a good understanding of why he might have ended it now.

I was very angry at first - but not now.

Computer Science Degree - Cambridge 1960s

• 
  
  His life was full of achievements,
  Most I fear will never be recognised.
  
  He was one of the first modern computer scientists that EVER existed - he was a student at Cambridge on what I beleve to be the first computer science degrees ever in about 1964 - and was later one of the team at IBM that invented this 'personal computer' that we are now talking though.

He has also since done other academic courses . He was a VERY clever man. If he had cared to he could put at least 2 degrees, two PHDs and many other qualification after his name.

But my memories of him are disjointed and very much of the past.

As a young girl/youth I remember I was so impressed to find that at Cambridge his room mate was John Dunbar Marian Faithfull's first husband: http://en.wikipedia.org/wiki/John_Dunbar Dunbar was going out with her- MF - then and I met him but never met M Faithful, John my brother went to their wedding- I was very young then myself but I did grow up with him as my adored older brother and did visit him at Cambridge and remember his achievements and those he mixed with in those very interesting times .

International Times was an underground magazine of the time that he introduced to me at a 'too young age: http://en.wikipedia.org/wiki/International_Times

Reading this had a lot of influence for me and my life as such a young girl. Reading this as a woman taught me not to be a victim - so many young women of that time were victims an not proactive.

But so few remember how it was then i.e in the 50s and 60s

Basically it was hell to be young and especially female if you were alone who wanted more for themselves than was our class or destiny -

John broke the mold as his origins were as humble as mine ............he even spent some time in a Dr Bernardo's home as a young child - does anyone now remember what that was all about ? He must have gone through sheer hell!!!

Well I know he did

But we are the only ones I guess who remember - those who were there are he testimony to what we went through and so sadly he is now not now here.

But he was probably never recognized for the achievements he made and it was huge I would not be able to talk to you here on this PC if it was not for he likes of my brother .

That is huge!!!!!

Think of the significance the PC has on all your lives!!!

I will continue this when I can

Rest in Peace - My Brother, John Reed

I have not written on this for ages
As most of us with HIV say - '

'we just want to get on with our lives'

But today I learned my older brother killed himself??

Of course he did not have HIV - I am yet to hear if he had any other physical illness. I talked to only him last week on the phone. He did not mention anything then although I know he always worried about his health since having bad tosolitus and related infections severely as a child.

Apparently he left a note I have been told went something like this ..........


'I love you all'

I know he did - but my initial reaction was anger that he did this to his family

As once you kill yourself you are out of it - it is the rest of us that have to cope with what you did .

Given my own situation I can not say I have not considered it - but I will NEVER do this as it is NOT about me

It is about those you leave behind

But I know this is probably easy for me to say - I think of all of us John had it harder in many ways - and yet he achieved so much


Why you may ask does it happen to me and my family ? Well it just does!!

What follows are disjointed memories of my brother which I will edit at a later date when I have got over the shock
______________________
In his memory here is his web site where he stored our family pictures and videos of him and his children and their life: http://www.reedfamilyalbums.co.uk/ReedFamilyAlbums/videoalbums/index.html

I am trying to download the videos as fast as I can as he is not now around to maintain it so I fear it will go down soon

Here is a video of my older brother with my dad in the 1970s: http://www.reedfamilyalbums.co.uk/ReedFamilyAlbums/videoalbums/1970/Cine1.wmv

My dad was VERY small and my brother VERY tall.

Ironically John was always regarded as the OK one of the family!!!!

A very successful computer scientist, businessman and a 'man of means' in fact if you add together all the property he owned in Cornwall and Windsor and London, it must have amounted to a lot more than I realised , so to my mind he must have been failrly well off compared to me and most I know .

But obviously your financial situation this is not everything

And as far as I knew he had reasonably good physical health for someone in his 60s ( although I know we share a very traumatic childhood and that probably I know more than most why he did this very final act.

Whatever his life has been since I know his reasons are in the past
A past I partly shared

He has two birth children who each recently had children, his grandchildren and his foster daughter that he later adopted has children that he loved.

So this has been a complete and utter shock to us all.

Trying to Live

I now have to try to live, to treat today as the first day of my new life living with HIV.

But how I hate that phrase, 'living with HIV'
Right now, for both of us, to live with it seems an impossibility .
And totally undesirable.

This is not because we do not understand that people do and can live quite a few years with HIV with medication. We can and have read the information, listened to everything everyone has had to say and tried to take it in..

And we know it is thought that some may reach a 'normal' lifespan i.e 70 to 80 years perhaps - others of course will not, seems to be just random luck.

But for us having got to our 50s without something like HIV we simply lack the desire, energy or willingness to live with HIV or want too. I think if we had got this our 30s or 40s our attitude would have been quite different. But thank god we did not for Caja's sake as had we, she would have probably been born to a mother with HIV - and so she may have had more chance of having it to.

But we just lack the will to want to 'bother' somehow with what living and trying to stay healthy and alive with HIV will entail and the constant fear that your health could break down as well has having to be on medication which will have side effects.

All just too much bother!
Quite honestly, both of us would rather die than live with it and die quite soon.

But neither of us want to die ill, so we have seriously talked about joint suicide once we have sorted out our affairs for Caja.

This is so different from how I have ever felt before, and certainly Barry.
Barry has always had robust mental health.
But I have gone through many things in my life including emotional and mental ill health.
Yet the one thing I have never truly been is suicidal.
Things have felt desperate as I am sure they have for everyone now and then, but I love life and always have too much of a sense that if you can just get through your latest challenge, something else better will be around the corner.

And of course for Barry suicide is as alien to him as joining the police force would be - he just would not even consider it under any circumstances - except this one.

The suicide option was/is not a cry for help or even considered on any emotional basis.
It seriously seemed a very practical thing to do and one that would solve the situation for both of us.

But of course the one thing that makes it not a good solution, is our daughter.
And I am only writing about this here because we have decided that this is a way out we can not take, because of our daughter.

If we had decided to do it we would not ever have mentioned it to anyone - you would never have heard about it.

But we have decided against it - and whatever the outcome of Caja's HIV test as she deserves as much life as she can get, and with support.

We have had a lot of our life, so it would not be a big loss to lose the last 20 or so years we had left - lets face it we are both in our mid 50s, the average lifespan is 80 in the UK, so this really was the last phrase of our life anyway

But it would not be fair for Caja and we have a responsibility to her to live as long as we can and support her for as long as we can and in anyway that she wants us too.

Even if she is HIV negative, she is an innocent victim of Barrys actions and even mine in a way. Because I knew he went to sea and where he worked and that there was always a possibility and I also knew that he would not tell me if he did.

So should really have insisted on regular trips to the GU clinic when he came home and not had sex with him until we knew he was OK.