(Notes) Ireland's National Conference on HIV and Stigma

[Jim Allen]

I apologize up-front for the length of this posting.

I had the pleasure of attending the HIV Ireland's 30th anniversary national conference on HIV and stigma. It was held in the beautiful and historic Smock Alley Theatre in Dublin originally the theatre had opened in 1662.

I could write a full page on this one item and same can be said for just about each subjects that was discussed during the conference, but instead I will focus on my own thoughts and take away lessons.

HIV archives
After registration there was a display of the HIV archives, showing some of the fantastic work pamphlets and news articles from last 30 years. A lot of the hard work had mainly been provided by volunteers living with HIV and NGO’s over the course of that 30 years.


HIV & AIDS in Ireland - Stigma, Social Inclusion and Social Policy Responses 1987 to 2017’ (Professor Maeve Foreman – Trinity College Dublin)

This first subject that really caught my attention and it included how policy has shaped over the course of the 30 years and what drove the changes. I noted that in 1987 the response was careful and she called the than health minister a procrastinator. This was before homosexuality was decriminalised and condoms became legal in the 90’s.

The Irish state, a 1971 condom approach for a 2017 HIV (PrEP) crisis During he middle of the presentation that had reached the early 90’s era, my thoughts got side tracked as it dawned on me that nothing has really changed. See the government and HSE today are still taking the same slow approach to sexual health, instead of the topic being condoms, this time it's about PrEP.

Recently people who have been buying generic PrEP online or from outside the state have been having it confiscated by the government (Customs officers). To me this feels like history is nearly repeating itself. See in 1971 it was the Irish Women's Liberation Movement who travelled to Belfast in buy contraceptives, and the than government and customs officers were waiting for them on return to take away any condoms purchased. It was only in the 90’s when initially condoms became legally available only on prescription through a doctor.

Basically our government is taking a nearly 50 year old approach/stance towards sexual health in the height of a HIV epidemic. Creating barriers to people taking charge of their sexual health and keeping people from making informed decisions


National HIV Survey Findings (Ms. Caroline Gardner & Mr. Robert O’ Donoghue - Quality Matters)

Press relase by HIV Ireland: http://www.hivireland.ie/hiv-ireland-calls-for-government-action-as-national-survey-finds-stigma-continues-to-impact-on-people-living-with-hiv/

Survey report:
http://www.hivireland.ie/wp-content/uploads/Summary_Report_HIV_Survey_2017.pdf

Next up we had a look at the HIV findings the survey findings, this consisted of two surveys that were conducted, one under the general population and one under the population living with HIV. HIV ireland the NGO said “The survey, one of the most significant pieces of research on stigma and HIV knowledge to be carried out in Ireland in over a decade”

Medically speaking HIV is no barrier to living a long and healthy life as long as the illness is diagnosed in managed however as the report and the day went on it also became more clear to me that getting an HIV diagnosis in today's Irish Society can be devastating and it remains heavily stigmatised resulting in fear shame and isolation.

This is reflected in finding such as that just under half of the people living with HIV in Ireland are still affected in their ability to travel, to get a mortgage or loan, to get insurance or to get a job. This is utterly disgraceful and pitiful for a relatively modern and wealthy Ireland where rights should be protected.

During the reading of the report we learned that 17% of people living with HIV in Ireland surveyed felt suicidal or had suicidal thoughts in the year previous this compared to 4% of the national average, I feel this for me was an absolutely shocking reflection of the impact stigma has, no matter what the source of that stigma. People living with HIV in Ireland desperately need better services including better integrated mental health and peer network support.


What was totally upsetting was that 18% reported they had their HIV status disclosed in a hospital setting, and 18% have also felt stigmatized by health care professionals. I find this absolutely appalling and shocking to to say the very least and we as a community need to be calling out those doing this, as it should and must be “zero”.



Finally on shame 80% of people living with HIV in Ireland agreed that members of the public believe living with HIV is shameful.

When we talk about general population and knowledge of HIV we still see too many people believe in myths those included 70% who believe that biting was a risk 24% through kissing and 11% believe that HIV can be transmitted through sneezing or coughing. 10% through sharing a glass and worst of all 9% through sharing a toilet seat. 

The knowledge gap is greater under young people under the age of 24 with 20% believing HIV is transmitted from toilet seats 




ActUpDublin
http://actupdublin.com/
https://twitter.com/actupdublin?lang=en

During the morning break I was approached by a member from Act-Up Dublin group, who walked up and said; You are JimDublin right? You look just like your photo, he gave me a hand and a hug and said; I’ve been meaning to email you to ask you a few questions and also I wanted to thank you for the work that you guys do on the forum, it's great.  (I didn't tell him but he nearly made me cry)

I don't consider anything I personally do on the forum as HIV support or work, it is however a fantastic online community and a great team effort from all our forum members, also I know there are some members who are truly fantastic & passionate real HIV activists, who I truly admire.

I have the same admiration for the very brave people volunteering with the ACT-UP organisation for doing, what so many of us can't do. Namely being visible, heard and loud regarding our needs, our rights and our future. I should be thanking them.

Later that day and very pleasantly surprised, I was asked to join the ACT-UP Dublin members and Doctor Patrick Murphy for Lunch. During lunch the we spoke about ACT UP Dublin’s upcoming events and the energy was absolutely fantastic. It was simply great to hear a group of upbeat people, talking passionately about things that matter to them and the wider HIV community.


‘HIV, Stigma, Social Inclusion and the Gay Community in Ireland’ (Dr. Patrick Murphy – TCD)

It was fantastic presentation and Dr. Patrick Murphy spoke in reference to a number of his studies and his presentation. In short the outcome was, poorer optimism post HIV diagnosis for the MSM community, than the Hetero sexual community. One of the call outs was also surrounding the current lack of a clear go to person in Ireland with regards to mental health awareness/outcomes, for the MSN community living with HIV.

Murphy PJ, Hevey D, O'Dea S, Ní Rathaille N, Mulcahy F. , Serostatus Disclosure, Stigma Resistance, and Identity Management Among HIV-Positive Gay Men in Ireland, Qual Health Res, 26, (11), 2016, p1459 - 1472Journal Article, 2016 DOI http://dx.doi.org/10.1177/1049732315606687
 
Murphy, P. Hevey, D., O'Shea, S., Ni Rathaille, N., & Mulcahy, F., Optimism, community attachment and serostatus disclosure among HIV-positive men who have sex with men, AIDS Care, 27, 2015, p431 - 435Journal Article, 2015 DOI http://www.tandfonline.com/doi/abs/10.1080/09540121.2014.987105

Murphy, P.J. & Hevey D., The relationship between internalised HIV-related stigma and posttraumatic growth, AIDS and Behavior, 17, (5), 2013, p1809 - 1818Journal Article, 2013 DOI http://www.tandfonline.com/doi/abs/10.1080/09540121.2014.987105


‘HIV, Stigma, Social Inclusion & Sex Work in Ireland’ (Ms. Kate McGrew – Sex Workers Alliance Ireland) http://sexworkersallianceireland.org/

During the afternoon we also had Miss Kate McGrew from the Sex Workers Alliance who presented and spoke very passionately about how the recently introduced new laws that criminalize the purchase of sex. This law actually makes things more dangerous for the people working in the sex industry and she spoke about how since the law changes she has had increased reports of rape, extortion and violence amongst sex workers. The changes in the law have also left people additionally vulnerable, as in part the change in law means additional challenges, when attempting to screen out potentially dangerous clients.

‘HIV Ireland – our experience of HIV related Stigma & Discrimination 1987 to 2017’ (Ms. Rebecca Seery & Mr. Richard Boyle – HIV Ireland)

The day ended with Miss Rebecca Seery and Mr Richard Boyle from HMV Ireland who spoke about their experiences working with the HIV community in relation to counselling and support in cases of stigma and discrimination. Its seems that things that we want to believe issues from the past are still happening today in Ireland.  People having difficulties with accessing support, services, employment and being treated unfairly. These challenges seem to still exist and are continuing to be a challenge.


Robbie Lawlor U=U
@Robbie_Lawlor

https://twitter.com/Robbie_Lawlor
HIV advocate. Sex educator
2016 https://www.youtube.com/watch?v=K6tprzKnndA

The day ended with Mr Robbie Lawlor spoke up and politely and elegantly hijacked the stage to talk about the U=U messaging. Robbie stressed that this is a is really important message for people living with HIV but also its a key message to get right and to get out to the general public. Robbie highlighted that some key Irish websites and businesses are currently missing this messaging and he called them to action to change this. In addition he asked for people to incorporate U=U when talking about HIV transmission prevention.

My conclusion
Very insightful day however sadly a lot of work remains for people living with HIV in ireland.

In Irish Society HIV is still heavily stigmatized not only at a social level but also at government level in terms of basic Health Care, prevention and treatment. This  concern seems to extend even further with actual stigma and discrimination occurring also in the commercial, banking and employment sectors for those living with HIV and their families. People who otherwise could live a normal day to day life, are heavily burdened by this stigma.

Jim

[paintedroom]

My conscience tells me i really should have gone.Your notes Jim,say it would have been a very rewarding experience.

I guess i`m a product of that which was central to the conference -Stigma and self stigmatising. Suffice to say Ireland and further Dublin is very small and suffocatingly gossipy place - bad news has lapped the world and sitting in an arm chair with a brandy.. before good news has had a chance to get out of bed..just tack catholic Ireland  on to that and you have a very toxic mix.I chose not to disclose my status to a soul and will stick with it for a multitude of straightforward,practical reasons,foremost being the knowledge that my hiv status in the eyes of the other would form the totality of my identity before any other consideration was given.They`d never let you forget,and in the eyes of many,if not all,you would be as per the conference,a deserving deviant.
I`not sure about the possibilities of ever shaking stigma in the public mind,anybodies mind, in that we are deeply irrational creatures.Not to be trite but we would need a huge,progressive and sustained public relations campaign to win hearts and minds..and expect a huge ideological pushback by rising reactionary and ideological forces.There is an increasingly promoted and accepted mode of thought that legitimises our sense of "disgust" as an evolutionary psychological reaction to the risk of pathogen infection.It does not matter that Ev psych has numerous fundamental problems,it only matters that a rationale is available to those very hungry forces of reaction..and they now have significant momentum.

I think by law Doctors in Ireland dealing with STD`S have to ask whether or not we have heard about Prep and know what it is.I certainly had no idea when it was mentioned to me the day of my HIV diagnosis.This probably attests more to my solo like wanderings and habits but it seems clear it should be as available as condoms are today.That prep is removed from those getting it abroad is a disgrace.Ireland continues to shock with its buried lies,dark secrets and official policy.It`s why i left the place at 21 - the old sow that eats her farrow.

Not sure how my relationship to HIV will change in the next year.Currently it`s a F******G curse as i still cannot shake this now month old head cold which has me feeling week and shitty(Docs Appoint tues).This on top of the Testosterone replacement therapy(mine was that of a 70 year old man and HiV related) which can take a year of a roller coaster to get your levels right - from weepy tart to priapic god in the course of a week and back again.I had kind of contracted with myself that when i got above 250 for 6 months and dumped the bactrim,felt a little safer, i would have a closer,harder look at my relationship to this thing.In the mean time i`m mostly swallowed up with keeping roof over head and food in gob.

Thanks again Jim,and while it maybe the community that motivates your efforts,it is not beyond many people here to recognise that it takes a not insignificant amount work and patience to do what you do.I only hope you have provided yourself with the necessary delightful distractions when that last repetition tips you over the putative edge and the desk seems like most obvious home to smash your head through.

We live and learn and grow..so the theory goes.P.

[Wade]

Good work Jim !

From the sounds of things loud voices are needed there and I am proud of you.

Wade

[leatherman]

thanks for the great write up Jim! with infographics no less!

condoms were illegal?!? Are they still by prescription only?
one thing here in the States that I have always been proud of is the work many ASOs and HIV advocacy groups do in free condom distribution. Because of the intersectionality of the causes, I've worked with several HIV, STD, women, and pregnancy groups across several states passing out condoms since the beginning of the epidemic. Condoms are nearly the "cure" to quite a range of issues and a great tool that shouldn't be keep under lock-n-key

[Ptrk3]

Great write up Jim, with great links!

Thanks very much for all the work you continue to do for us all.  Your work is much appreciated.

[Jim Allen]

condoms were illegal?!? Are they still by prescription only?

Thankfully condoms are legal nowadays and without prescription. 

The state was reflecting at the time Catholic teachings and the Church wishes regarding sexual policy.

Until 1979 condoms were full out illegal and until 1992 it was highly restrictive. 1979 to 1985 only with a prescription, and from 1985 to 1992 only on sale in limited settings, so though a family planning office.
 
I am sure we can all appreciate that despite 1992 sounding a long time ago, it actually means that even the generation born in the 80's and 90's who are now in their late 20's and late 30's were effected by the tail end of this ban, and restrictions. The image of condoms and the total lack of education all helped result in a slow uptake in usage and correct understanding of them during a critical time.

Education even today remains a problem for the next generation, in 2016 an estimated 97% of the schools in Ireland are still directly owned or run by the religious orders (The Church). Let's be honest condoms and sexual health has never really been the churches thing, so its just another Irish generation "bare backed" before they even know it.

https://en.wikipedia.org/wiki/Contraception_in_the_Republic_of_Ireland

[Jim Allen]

I guess i`m a product of that which was central to the conference -Stigma and self stigmatising. Suffice to say Ireland and further Dublin is very small and suffocatingly gossipy place - bad news has lapped the world and sitting in an arm chair with a brandy.. before good news has had a chance to get out of bed..just tack catholic Ireland  on to that and you have a very toxic mix.I chose not to disclose my status to a soul and will stick with it for a multitude of straightforward,practical reasons,foremost being the knowledge that my hiv status in the eyes of the other would form the totality of my identity before any other consideration was given.They`d never let you forget,and in the eyes of many,if not all,you would be as per the conference,a deserving deviant.
I`not sure about the possibilities of ever shaking stigma in the public mind,anybodies mind, in that we are deeply irrational creatures.Not to be trite but we would need a huge,progressive and sustained public relations campaign to win hearts and minds..and expect a huge ideological pushback by rising reactionary and ideological forces.There is an increasingly promoted and accepted mode of thought that legitimises our sense of "disgust" as an evolutionary psychological reaction to the risk of pathogen infection.It does not matter that Ev psych has numerous fundamental problems,it only matters that a rationale is available to those very hungry forces of reaction..and they now have significant momentum.

I re-wrote my reply to you about 5 times, I could probably write a book in reply to your thoughts. 

Fully agree on the toxic mix in our society, in part due to Church ethos and its hold over the state past and present.  I wish I could tell you that living with ones status open in the public is easy but that is not always true.

I do firmly believe that someones HIV status is deeply personal and not something that should be public as its simply nobody's business. That said I hope that we can fight, challenge stigma and educate people so that stigma is no longer a factor for people when making the choice of disclosing or not.

Thanks

Jim 

[Jim Allen]

Great write up Jim, with great links!

Thanks very much for all the work you continue to do for us all.  Your work is much appreciated.

thanks for the great write up Jim! with infographics no less!

Good work Jim !

From the sounds of things loud voices are needed there and I am proud of you.

Wade

Thanks guys, really appreciate it.
Its was just attending and being visible, I wish i could do more.

Jim 

[Jim Allen]

My conscience tells me i really should have gone.Your notes Jim,say it would have been a very rewarding experience.

Well I noted down the recording links this afternoon if you want to watch anything back. (If you look closely on the right hand front, you see the back of my head, its the shiny one in a suit, that's me)

Welcome and Opening Remarks and Formal Launch.
https://www.youtube.com/watch?v=UpS7HyZ44V0

Session 1 Part 2: ‘HIV & AIDS in Ireland' Professor Maeve Foreman
https://www.youtube.com/watch?v=wuMtgFyly9U&t=11s

Session 1 Part 3: ‘HIV, Stigma, Social Inclusion and PLWHIV & National AIDS Memoria’ Tonie Walsh
https://www.youtube.com/watch?v=8HPFvfAph00

Session 1 Part 4: 'National HIV Survey Findings.' Caroline Gardner & Robert O’ Donoghue
https://www.youtube.com/watch?v=Pr4sNdMGSyc&t=1559s


https://www.youtube.com/watch?v=TMhhMPE1zKY
Session 2 Part 1: HIV & AIDS Stigma, Laws & Policy. Sebastian Kohn

https://www.youtube.com/watch?v=GrSblxyD-mY
Session 2 Part 2: People Living with HIV Stigma Index, the UK Experience, Mr. Alastair Hudson

https://www.youtube.com/watch?v=dcgzZtgCgVc
Session 2 Part 3 HIV Laws and Policies in Europe, Ferenc Bagyinzsky

https://www.youtube.com/watch?v=Wur2eZ3YUWc
Session 2 Part 4: AIDS Quilt Presentation Mary Shannon

Morning Q&A
https://www.youtube.com/watch?v=sXIyQ4JXTtA&t=76s

Session 4 Part 1 'HIV, Stigma, Social Inclusion and the Migrant Community in Ireland’ Dr. PJ Boyle
https://www.youtube.com/watch?v=TAwaCj1Uumc&t=1s

Session 4 Part 3 ‘HIV, Stigma, Social Inclusion & Sex Work in Ireland’ Ms. Kate McGrew.
https://www.youtube.com/watch?v=up1Rk7ktn40

https://www.youtube.com/watch?v=ydA96nJZKcI&t=2s
Session 4 Part 2: ‘HIV, Stigma, Social Inclusion, Gay Community in Ireland’ Dr. Patrick Murphy

[paintedroom]

Making my way through this series of videos and am marvelling at the commitment and integrity of those directly involved.
I can see how important it is to put some flesh on the bones of the institutional and civic approaches to the various challenges we all face and the implicit responsibilities therein.I dare say i feel like something of a moral coward for my timidity to date and can see a road forward for a more mature and intimate engagement.At the risk of sounding like an authoritarian,these videos should  be required viewing for anyone who has brushed up against this still crisis issue.That historicist approach mentioned by both Professor Foreman and Tonie Walshe has been something i have been studiously avoiding..as if a deeper understanding and knowledge of the HIV struggle might push me forward to a confrontation with a moral imperative.

I remember  reading the great James Baldwin and being so struck by his moral courage,strength and intelligence(who hasn`t ?) and what he said about " Who is the Nigger ?" and how it relates to the world of stigma. -

https://www.youtube.com/watch?v=L0L5fciA6AU

I`ll continue to make my way through the videos.

[OneTampa]

Thank you Jim.

The Courage and Faith of Everyone There is Heartwarming and So Admirable.

It Really Does Take a Village to Remain Vigilant and Attain Victories (Large and Small) Along the Way.

Thank You.  Thank You. Thank You.

Best,

OT

[Jim Allen]

To be honest, few months on and reflecting this week I only now realize how much energy and confidence I regained from attending this.

Jim