HIV Transmission: No “Good AIDS/Bad AIDS”, just people

HIV-TestingAs a newly appointed HIV psychologist, I’ve been taking some time to better inform myself. I’ve been reading NAM’s Living with HIV and this in itself has provided an opportunity to examine societal (and my own) prejudices. I notice my own resistance to reading the book on the bus. Will people assume I have HIV? Will they assume I’m promiscuous or a drug-user? As a young white woman, perhaps I’ll engender pity, probably the victim of an assault or an infected blood transfusion? Why does it matter to me if people make these assumptions?

As we come to the end of HIV testing week and prepare for World AIDS Day (1st December) HIV is very much in the media. An article interviewing Silvia Petretti of Positively UK really stood out to me

“How did you catch HIV?

I find this question very judgmental. Whether I say that I got HIV by selling sex, injecting drugs, from my husband or my mother in the womb, this puts me in a category.  Either I’m an innocent victim or somebody reckless, who got what they deserved – as the coverage around Charlie Sheen seemed to suggest. It’s the reason so many women living with HIV shy away from the media. It doesn’t matter how I got HIV. It matters how I live with it.”

To me, this quote gets to the heart of our attitudes towards HIV. When we find out someone has HIV we want to know WHY. We associate HIV with sex and sex always gets our attention. Perhaps this curiosity is born out a society that devours salacious celebrity gossip and online rumours, but often there seems to be a darker side to it. Underlying the question is a sense of placing blame. Who is at fault? How did they allow themselves to be infected?

But do we really have a right to know someone’s transmission story?

Although certain groups are at greater risk of HIV, sometimes people just get it and it’s hard to pin it down to something they did or didn’t do. Many people have the virus and don’t know their status and with a late diagnosis it becomes increasing difficult to establish how it was transmitted. Many people living with HIV don’t know how they contracted it, and have to live with this uncertainty.

If a gay man contracts HIV is it easier for us to condemn his sexuality and “irresponsibility” rather than try to understand and relate to his experiences? Perhaps it is easier for us to cope with the possibility that any one of us could catch HIV, by thinking that it only happens to “bad” people.

Petretti mentions the media coverage of Charlie Sheen’s disclosure of his HIV status, which falls a bit too close to the BrassEye’s satirical sketch on “Good Aids/Bad Aids”. In the mock-documentary Chris Morris admonishes a gay man for having “bad AIDS”, the kind that’s your fault for getting.

NB – This is a very dark comedy and could potentially be offensive or triggering. 

 

Sheen’s disclosure could be a turning point in attitudes towards HIV – an image of a public figure living well with the virus. For many their image of someone with HIV was born out of 80s campaigns and they view HIV very much as a death-sentence. Many people don’t know that with good treatment adherence, viral load can be undetectable (meaning that you can’t pass the virus on, even if you have unprotected sex) and life expectancy is only a little less than that of the general population. Media has instead focused on his lifestyle, making assumptions about how he contracted the disease. With good treatment, many people’s immune system is supported so they don’t go to develop the infections associated with AIDS. In many ways, people can live ordinary lives, aside from regular medication and review appointments.

Charlie Sheen

Charlie Sheen, the most recent celebrity to speak openly about his HIV positive status

This early newsreel from 1982 is particularly moving, released before HIV was really known about. It describes a form of “cancer” that seems to be affecting gay men. This is before HIV-stigma set in and it was seen as an illness rather than a judgement on someone’s life choices.  As our understanding of the virus has increased, so too have stigmatising attitudes that criticise and exclude.

We have no right to know how people contract HIV, that is their own story to share as they see fit. Condemnation and pity are both unhelpful responses. Attitudes towards HIV limit people from getting tested and disclosing their status, which increases the risk of transmission. Although HIV is often transmitted through sexual contact, in many ways it is comparable to other infectious diseases. It’s a long-term condition and if treated appropriately, it should enable the person to live a “normal” life and not endanger any other person. There is no “good” or “bad” AIDS, no more or less deserving. When we can detach ourselves from our seedy fascination with knowing the hows and the whys, we can allow ourselves to take a step back from our ingrained prejudices. Then we can really see the person.

“Just a phase”? Freedom to be a little sexually flexible

Queer women’s sexuality appears to be having something of a media ‘moment’. The new series of Orange is the New Black has got many heterosexual women claiming they’d “go gay” for genderfluid star Ruby Rose and supermodel face-of-everywhere Cara Delevigne is on the cover of Vogue describing her loving relationship with singer Annie Clarke. A comment from journalist Rob Haskell has drawn particular anger “Her parents seem to think girls are just a phase for Cara, and they may be correct.” Having their same-sex attraction written-off as “experimentation” is an experience many queer people can relate to. Photos of Kirsten Stewart sharing intimate moments with her partner Alicia are often naively captioned as “Kirsten and friend”. Bisexuality is often treated as invisible when the individual is in an opposite-sex relationship, as though their past relationships, attractions, preferences and sexual experiences are no longer a part of their identity. People of non-heterosexual identity are keen to stand up and proclaim that their sexuality is not a “phase”, that it’s who they are and it’s here to stay.

IMG_0268

But what’s wrong with having a “phase”? Tastes and preferences vary throughout our lives and experimentation is a way in which we can work out what we like, what we want. The phrase has become imbued with negativity – connotations of inauthenticity. Ideas that sexual experimentation is motivated by ideas of what is “cool”, what is expected at a certain age, being a part of a peer group where such a thing is “expected”. Sexuality is treated as a trend, a fashion. Implicit is the notion that the experience, and any feelings attached to it, is not genuine. In cold hindsight it is rewritten as meaningless.

Continue reading

Halloween and representations of mental health

ImageImage

‘Mental Patient’ costume. This is clearly inspired by Silence of the Lambs’ Hannibal Lecter. Does that make it ok? And who is to blame for the offense? The author of the book? The director of the film? Or the costume maker?

As Halloween looms closer, I’ve noticed a considerable number of stories appearing in my time-line about ‘scary mental illness’ being used in Halloween media. The best known examples being the campaign for Asda and Tesco to take down ‘mental patient’ costumes, and the current debate over Thorpe Park’s ‘Asylum‘.

Mental health service users  have been debating these issues online with strong opinions on both sides. On the anti-campaign are claims that these images of people with mental health problems as frightening are deeply stigmatising and build into the damaging discrimination that people experience. Mental health charity Mind encouraged followers to tweet pictures of themselves to who what a real ‘mental patient’ outfit would look like.

On the other side have been voices (including those of people who have experience of mental health problems) saying that these costumes and attractions are clearly based on horror movie imagery rather than real mental illness and that the campaign has drawn further attention to the attractions and made people with mental health problems appear obsessive and joyless.

I haven’t fully formed an opinion on either side. The costumes are indeed insensitive, though they wouldn’t be the only ones out there. Though I don’t necessarily support it, fancy dress is often very un-PC. Cultural appropriation is rife (think red indian and geisha costumes), as is sexism. When it comes to Halloween, I wonder how pagans/wiccans and people with facial disfigurements feel about the other ‘scary’ costumes out on sale? Everyone has the right to be offended and express their view, but if we take down these ‘patient’ costumes, we should probably do away with many of the others also.

The idea of someone with mental health problems as scary wasn’t invented by costume makers. We have a long history of characters in horror films who are portrayed as suffering for mental illness, often shown as the ‘motive’ for their behaviour. The ‘psycho-killer’ is a common stereotype. These films are very popular and the incredibly negative portrayal of mental illness has seemingly gone unchallenged. Often these ‘mental patient’ costumes seem to be based on characters like Silence of the Lambs‘ Hannibal Lecter.

Image

Mental illness and horror – a popular combination?

An abandoned asylum is often a horror movie setting (think House on Haunted Hill). Asylums have an awful history, and rightfully so. The patients who lived in these asylums were subjected to awful treatment, and there’s a reason why these places were shut down. Some horror films have used this history, portraying cruel doctors and the kinds of horrific ‘treatment’ that was given out. Unfortunately some have preferred to focus on the patients themselves, and characterised them as frightening characters. Mental health problems can cause someone to act in a way that others might find hard to understand and frightening, but these media characterisations of scary patients surely does nothing to encourage understanding.

In one of Thorpe Park’s responses to the campaign they commented that the ‘Asylum’ attraction has been running for 8 years without complaint, and has been popularly attended. Why is it that uproar is only gathering now? Similarly, the ‘mental patient’ costumes are not new this year. It may be that mental health campaigners feel more empowered to take a stand and take on companies profiting from these negative stereotypes. While I hope this is the case, I think we need to consider why we’ve let negative portrayals of mental illness go so unchallenged for so long. We’re appalled by the straight-jacketed costumes but still flock to the films that inspired them. These costumes are in bad taste and I wouldn’t like to belittle the hurt they’ve caused to an already stigmatised group, but I think amidst the uproar surrounding them we need to think about where these ideas originate and whether taking down the costumes and attractions will really get to the heart of the stereotypes and stigma around mental health problems.

Unmentionables: Talking about sex in the healthcare setting

'The Sessions', in which a disabled man sees a sex worker, draws attention to the desire for individuals with disabilities to enjoy a sex-life

‘The Sessions’, in which a disabled man sees a sex worker, draws attention to the desire for individuals with disabilities to enjoy a sex-life just as much as the able-bodied.

Doctors, psychologists and other healthcare professionals, both in mental and physical health, are used to talking about difficult subjects. Bowel movements, terminal diagnoses, suicide and self-harm, tricky topics are a standard part of the job. Yet somehow when it comes to sex, many struggle to find the words or avoid the topic all together.

Sex, whether defined by sexual acts, more generally as intimacy or in many other ways, is an important human need. It contributes highly to individuals’ quality of life. On Maslow’s famous Hierarchy of Needs it comes only after physiological and safety needs in terms of importance. I think I can go as far as to say that changes or difficulties relating to sex are common to the majority both physical and mental health problems, whether they relate directly to the symptoms (e.g. impact of pain and limb weakness on sex positions, hypersexuality in mania) or are secondary to medication used to treat the problem or further consequences (such as impact of taking on a sick/carer role, self-consciousness relating to skin conditions). Anti-depressants are very widely prescribed, yet often information on the (common) sexual side-effects is left to be read in the small print. I’m reminded of a quote from Ben Goldacre on SSRIs,

“ I’m trying to phrase this as neutrally as possible, I really enjoy the sensation of orgasm. It’s important to me, and everything I experience in the world tells me that this sensation is important to other people too. Wars have been fought, essentially, for the sensation of orgasm.”

Stroke for example, is a condition where sexual dysfunction has been well documented. Yet in research speaking to rehab staff, they rarely brought the topic up with clients and on the occasion when it was brought up, staff often felt embarrassed and uninformed (McLaughlin & Cregan, 2005). Reasons given for staff not approaching the topic also included fear of upsetting clients and there has been other research suggesting that (often unconscious) stereotypes relating to sex, relationships, illness and disability, play a role in this silence. Although sex problems have been particularly highlighted in stroke, there is evidence that these staff attitudes and difficulties exist in a variety of settings and in relation to many other conditions. Whilst working in a clinic for Chronic Fatigue, I approached staff about the possibility of including sex and relationships as a topic to include in a psycho-education group, and was met with quite a dismissive response. It was too sensitive, and time was needed for other important areas. However, a friend with the condition informed me that on a service-user forum, the sections relating to questions and advice about sex were by far the most used. Service-users often have to go and seek out their own information because professionals fail to provide it.

Continue reading

Rape happens to men too

  If you’ve used the London underground in recent works you probably can’t help but have noticed the posters for charity Survivors UK. Under a dark, stormy sky, it features a rugby ball, punctured with a nail. The stark slogan above reads ‘Real Men Get Raped’. 

The advert has an underniable shock-factor. Maybe that’s just because it has the word ‘rape’, displayed so boldly and publically. We’re British, we barely even like talking about sex, especially not anything relating to anal sex, and definitely not sexual assault. What if a sweet, middle-class child saw this, tugged his father’s coat and said ‘Daddy, what’s rape?‘. Now, that would be an uncomfortable conversation! But maybe it needs to be had.

Rape is horribly common. Amongst the people you work with, it’s likely that a couple of them have been victims of some kind of sexual assualt. Amongst your friends and family, it’s likely that a couple of them have also been victims. Statistics hide the large number of people who never come forward about what they have experienced, secrets that go undetected and unchallenged. And rape doesn’t just happen to young women. Perpetrators of sexual violence and abuse can be both men and women. Rape happens to women of all ages. It happens to people of all sexualities and appearances. It happens to children. And yes, it does happen to men. Survivors UK quote the statistic that every hour, a man is sexually assaulted in London. And there will be countless other crimes in other cities, and indeed all over the world.

We don’t usually get too worried about men being sexually assaulted. Men typically don’t wear short skirts, low-cut tops or engage in the other ‘provocative’ behaviour that has too-often been blamed for women’s assaults. We worry about women walking home on their own, about their getting their drinks spiked or picked up by unlicensed taxis. What about men? Are they somehow safe, immune? This article, though focused on sexual violence against men as a weapon of war abroad rather than in the UK, highlights some of the horrific realities of male rape. It’s quite graphic and intense, but worth reading. This is another very powerful article  about a police officer’s experience of being raped and the following investigations. It does happen, far more often than we might like to think.

The Survivors UK campaign has attracted some flack for their use of the phrase ‘real men’ as critics says this perpetuates the idea that there is such a thing as a ‘real’ man, or that a certain type of man may be more ‘real’ and ‘manly’ than another. This is unfortunate, but I don’t think it detracts from the impact of the posters. Their aim has been to try and dispel myths that male rape happens to only a certain subset of men, perhaps those who are gay or men who are physically weaker or more effeminate. The reality is that rape can happen to any man, regardless of whether he fits a stereotype of ‘manliness’ or not. Rape happens to ‘macho’, muscular, heterosexual, beer-drinking, sport-playing, hunting, fishing, all-round red-blooded men, as well as any other variety. On the use of the image, Michael May of Survivors UK said: “We’ve chosen to use an alpha male sport in our advertising to challenge assumptions about the type of men who get raped. It’s just as likely to be a rugby player as a librarian, a suited city banker as a hooded gang member. And we hope that by challenging our innate assumptions about the identity of male victims, we can make it even fractionally easier for a male rape victim to ask for help.” This rugby-themed poster deliberately coincides with the Six Nations, so it’s aimed at these men in particular. Maybe it’ll start a conversation. Maybe people will look at it and then awkwardly look away. If all the poster does is make someone think, perhaps for the first time ‘Rape actually happens to men’, the it’ll be a success. There is a great stigma and culture of shame around rape and this can make it even harder for men to come forward to receive support and justice they deserve. Survivors UK quote that only 11% of men ever report the crime they’ve experienced. This is disturbingly low. Would you ever know if a man in your life had been raped? Would anyone? Let’s start a conversation.

More information and support at Survivors UK