“if Ashley Gillard were alive to tell his side of the story it could be very different,”

By Andrew Goyvaerts

@PosMovingOnCIC

Having spoken before about how at times much of the stigma directed at me due to living with HIV feels the same as stigma experienced due to living with epilepsy, it is now time to point out two big differences. Personally, I have never been concerned when disclosing an epilepsy diagnosis to someone that this person might physically harm me because of it and, I have never heard of someone being allowed to die after disclosing to another that they are living with the condition.

The horrific death of Ashley Gillard, 31, at his home in Milton Keynes followed by the subsequent trial of his then partner Thomas White, 26, brought to light just how real the concerns of some people are regarding disclosure of status. After being tied to his bed during a sex act, Ashley began to fit in what is said to have been a reaction to drugs both men were taking, during this time Ashley is believed to have disclosed his HIV status to White, angered by it White did nothing to help as the young hairdresser died in front of him. Returning days later he set fire the apartment in an attempted cover up but detectives were able to see straight through it, arresting the 26 year old soon after. Fast forward to last month and the dismal sentence of 13 years handed down to White, of which only 9 years will be served.

His sentence, it will be argued, was in line with the charge of manslaughter by gross negligence and two counts of vehicle theft to which White pleaded guilty after he claimed the deceased had not disclosed he was living with HIV during previous sexual encounters, leaving the question of why were so few charges brought against him. What about arson, public endangerment of the apartment building’ other residents, tampering with evidence or the seen of an investigation?

Having read of people being sent to prison for the same length of time after an assault where the victim survived, with no longterm physical health problems, it seems to me that there is something very unjustifiable about our justice system.

Since this trial, my mind keeps reflecting on times of disclosing to someone that I have epilepsy and question, if upon disclosing it I took a seizure and that person watched me die out of uneducated anger, would they have faced a mere manslaughter charge?
My gut instinct says no, the book would be thrown at them on as many counts as possible and the ensuing trial would have received much more attention, though perhaps for the grieving family it is good this one did not, allowing them to mourn in peace, yet what little coverage there was highlighted the reality that lack of education surrounding HIV stretches beyond the general public to the courts and law of this land, which has been demonstrated in cases like this along with HIV criminalisation laws that have no place in a democratic society where all are claimed to be equal.

Finally for the sake of Ashley Gillard there is something I must note that seems to have been missing from what little coverage of Whites trial there was. The only witness to this event is a self confessed thief and arsonist who was comfortable to sit back watching someone die, if Ashley Gillard were alive to tell his side of the story it could be very different.

Advertisements

An open letter to the Minister for Health in Northern Ireland

Dear Mrs O Neill.

As the issue of a PrEP roll out continues and our Department of Health toes the line of sighting a NICE review alongside a proposed pilot scheme, I feel my only option is to write, with respect, an open letter to you and hope that my persistence on this matter is not at my peril, as well as hoping human nature, not politics will prevail in your response .

With naivety it must be admitted that on the day of being diagnosed in 2013, I had no idea a preventative treatment for HIV was approved by the FDA in 2012, I had heard how close society was to having such a treatment but to a certain degree, we always hear about being close to this treatment or that cure so at the time I dismissed it as preemptive reporting, believing when a treatment was developed it would undoubtedly make front page headlines around the world with governments fighting to get their hands on it, however that has not been the case.

Most world headlines did not herald a new era in HIV while governments have barely flinched. After learneing of PrEP’ existence, at first, hesitation by those with power to act on its approval did not make me angry for my sake, mostly I thought it was too late for me and the best thing to do was focus any anger on advocating it’s approval to prevent people from being diagnosed in future, that is still my immediate thought, yet as time passes and the NHS/HSC continue to procrastinate I increasingly feel like every person who has been diagnosed with HIV since 2012, along with those who will be diagnosed between now and a national roll out, deserve an explanation as to why this process has dragged on for so long and why it has centred around politics instead of compassion.

To some people this might seem unreasonable but as a society we endorse institutions like the HSC and allow our tax money to pay the wages of its CEOs because they exist to take care of these matters, when they fail to do so or fail to do so with the ability we expect, why shouldn’t we seek an explanation? If an employer tells an employee it is their responsibility to complete task x, y, z and they fail to do that, he or she will be expected to explain why, this is the exact same situation.

In my first response from the DoH it listed off how much great work is undertaking by that department to help people living with HIV, which to a certain degree is true, but this person with HIV has to travel nearly 3 hours on a round trip for professional, dedicated support because the only centre we have in NI is based in Belfast. I would be insulting your intelligence to point out that everyone living with HIV in Northern Ireland are not based in Belfast but will ask if you realise how insulting it was to receive an email from your department that very egotistically rhymed off a list of work it does while I sit here crying out for more support in rural areas?

The Department of Health might be able to say it is doing something but from someone on the brunt end of the stigma and lack of support, it is not enough.

As our newly appointed Minister of Health I do not feel you responsible for creating a clear disparency between living with HIV in a rural area when compared to an urban area, I also do not feel you responsible for the fact that after 4 years and thousand of diagnoses, a preventative treatment for HIV is being cruelly dangled over societies head, but I do feel you are now responsible to do something about all this. It cannot be said the DoH is not aware of these issues, I have contacted the department privately about PrEP and subsequently about the personal issues I face as someone living in rural NI with HIV following which I received a very bare,apathetic response saying that my comments “had been noted”, now I am reaching out to you personally and publicly. Much of what I have said here Sinn Féin is said to stand for, accountability in governance, community, health, so it is on this basis as well as you being Minister for Health I hope you will act on this letter by responding with humanity and understanding, something that has been missing to date in the response from representatives of the DoH.

Go raibh maith agat, saol fada, agus breac-shláinte chugat.

Andrew Goyvaerts.

Rurally invisible and living with HIV

In the months after my diagnosis life was unsure with my head everywhere, the doctor said it was a “pretty bad, prolonged seroconversion”, I’v only had the one so just take her word for it but it meant work was not an option for a time, activities I usually took part in were halted (honestly not talking about the sexual kind) and the natural concern of what might happen next was a constant reminder that although I couldn’t see it or no doctor could show it to me on a scan, there was a condition inside me that could potentially lead to a lot of harm. My first concerns were, will the treatment work or do I have a resistant strain, right next to, did I unknowingly transmit it to anyone. That was a big concern, fortunately due to regular screening I was able to track down everyone who needed to be tested and this was not the case. Suggesting that I get support, my physician referred me to Positive Life, the only drop in support service in Northern Ireland dedicated to helping people living with HIV.

The support I received was amazing from counselling to free massage, you name it they have it, group support, workshops, advice on rights, anything a person living with HIV might need. In the first eight weeks this service, especially the counselling which truly was helping, became a lifeline, one that was needed far beyond those eight weeks however, living 14 miles from the only centre we have in N.I. and using public transport it was a 2hr 40min round trip, traffic permitting.

After a couple of months, traveling for such a length became unrealistic, the cost of a return ticket was then roughly £9 return, for someone who was unemployed and could not fit their appointments around the time that allows discount travel with a pass, £9 becomes a lot of money over time. Also during seroconversion my bones, as well as muscles would ache a lot which was made worse by the prolonged sitting.

When this support ceased I felt lost for quite a long time before setting up Positive Moving On, my way to support myself. I can’t explain how isolating it was to live in a house alone, with nobody in the vicinity who could relate to what I was feeling and thinking or have any form of professional support at hand. Then for a brief period funding was available to pay a peer support worker to conduct home visits, finally I felt a sense of there being a HIV community and support out there but unfortunately his contract was unable to be renewed by Positive Life, so at present for anyone living outside Belfast and in my case, the only option if I needed to see someone is to travel for several hours.

People in rural areas need support and to be part of the community as much as people in cities or urban areas but currently that cannot happen due to cut after cut to funding for sexual health services, as well as rural area funding that has had particular influence on our hospitals. Never someone to blame politicians for everything and having met quite a few in my time including a couple who are closely related, it is with great respect that I express how let down I feel by my government. Rural areas have been decimated with austerity, austerity we were told would not touch HIV services but has effectively ended them in many areas, it has sent a generation packing to other parts of the country and the world, away from people they love because there is very little to no opportunity left in rural United Kingdom and Ireland.

We have taking our fair share, the sexual health sector and rural areas have both taking there fair share, it is time to find the money elsewhere along with giving some back to us. Northern Ireland need to advance the services on offer here, with diagnoses rates rising sharply we need them, badly. Positive Life need more funding so they can reinstate and conduct more home visits than they were previously. People living with HIV in rural areas need opportunity, for housing, for employment or education, for support from family who live close by, not hundreds or thousands of miles away.
This is not just a problem for People in rural areas, currently people in several urban areas face the loss of their lifeline, but out here, we don’t even have one to begin with. Think of us as a bunch of farmers or fishermen if you like and by area to area we are few, but we are humans with needs and rights.

Console, another notch in Irish scandal

The charity module is amazing and at this stage has most likely helped billions of people through HIV/AIDS as well as other medical conditions, poverty, homelessness, domestic abuse, so many areas that for me to name them all would surely cramp my fingers and tear your eyes.

The recent events with Console that hit headlines is just another notch in Irish scandal and with it another blow in the confidence members of the public have for our institutions. While the frustration of the general public is understandable, the frustration other charities who do unquestionably good work no doubt feel is crystal clear.

For a person to put so much effort, sacrifice, consideration into their work and then be affected in the crossfire of a scandal like this would for me, be flooring. The public or other bodies are justified in asking for more transparency within the charity module yet it should be remembered that many charity workers do not get paid a cent for the endless hours away from loved ones, or any of the perks high up members of Console appear to have benefited from.

Don’t take down an industry that has benefited so many people, yes there are faults, like any industry, but mould it into something better and stronger, not into the ground.

For now there is too much investigating needs to be conducted into what has happened in the matter of Console for real comment to be given by anyone except those who were involved in it, but that investigating should reach all avenues, including any possibility of a law having been broken to reassure any loss of faith the public might have in the charity sector following this.

Having said all this, the bottom line of this blog and any media article should be that those who might suffer most are the many people at risk of suicide if alternative services are not sourced, this could even come through the expansion of Pieta House or another mental health charity.

I dislike being called HIV positive or people using the term being HIV positive

Terminology is something we use daily, it has the power to inspire or offend in equal measure. I once received severe criticism after suggesting that it was possibly time to rename HIV in the hope that a new name would generate fresh curiosity from the public to become more educated about the condition and questioned if it would also help reduce stigma in the long run, clearly I was not saying it would be the end of stigma completely but a couple of people seemed to think that was the suggestion. In my opinion words have real power to them, not the kind handed down to someone in authority, real power that can create real energy in the universe, sometimes that can be a positive energy that advances humanity and other times it can be negative energy that holds us back, they say a picture says a thousand words but when did you last fit 1,000 words on an 8 x 6? Words and writing, for me, are the ultimate form of expression that can be projected in many ways such as an article, book, poem, blog, song, script for theatre or film, the list is endless.

Personally I dislike being called HIV positive or people using the term being HIV positive. People are not called diabetic positive, epilepsy positive and so on which for me sets people living with HIV apart from others who are living with a medical condition, but that is just my personal preference. Somebody referring to themselves as HIV positive is something that appears in my newsfeed daily, do I get angry about it? No, because in a world of such a large population, with such a variety of terminology and words (Oxford just added another 1,000 to their dictionary this week) it is inevitable that someone will use a particular word I dislike. Now if someone reads this blog and directs the term at me in future knowing I dislike it, that would make me angry and I would probably not think that person to be very kind but in general I don’t believe people mean to offend me when they use this term HIV positive anymore than I would mean to offend someone if I were to use a term they dislike. Sometimes in life that is what it has to come back to, whether or not the person meant to offend because we all have our preferences when it comes to the terminology society uses and no singular person should expect their preference to be put ahead of other peoples, that’s not an equal society or sustainable.

If I ever use a word you dislike please understand, the same way as I will for you, that it is not my intention to offend or annoy you and please do not think me any less a human, as I will not you, for expressing yourself the way you are comfortable.