It’s different now though isn’t it, the stigma, it’s not as bad as it was in the early days of inscribed tombstones and crashing rocks? Juno Roche continues looking back over her story.
When my mum was in her twenties she had two abortions that she didn’t want to have, she wanted to keep both but pressure, the pressure of not being poor was overriding in my dad’s mind.
He judged himself by his poverty-defined upbringing and in his mind more children would mean more poverty and the stigma of yet again being the poor kid from the poor estate with scruffy shoes and a scruffy dog called Scruff. My dad was a latchkey kid who would hang about on the street until his mum returned from whatever work she was doing. The history of my dad’s family is ‘Shoreditch boot repairers and needle-women’ not ‘boot makers or seamstresses’. There is no money as far as you go back and we have gone back as far as the 1700s. No money, just poverty, the breadline and unskilled work. The stigma of poverty shaped my father’s desperate desire to drag himself up and out of the quagmire of his past. The stigma of poverty made him want few, if any children. Children, in my dad’s eyes, would be a destabilising factor in his dream to become the wealthiest man on the street, or at least not the poorest.
My mum on the other hand comes from a very good family in Dulwich, I say a good family and by that I mean in terms of money.
A family with money I should say.
My mum grew up with Harrods accounts, handmade clothes, gardens full of flowers and Mock-Tudor houses in Dulwich Village. My mum was at least ten years younger than her siblings and often left home alone as her mother worked hard to manage her own shops, an unusual feat for a widowed women in the Thirties and Forties. My mum was abused by the lodger, she never told anyone until she was an adult and she told me. Her stigma, sex, her response utter silence. She kept it in, locked inside. She never developed a way of having a healthy emotional response to pain. She locked it inside and hurt herself by other means. Food, starved, the wrong men to punish her mother for not knowing. The wrong man, my father and a bed to lie in, her rebuttal from her mother who didn’t understand because she didn’t look properly or hard enough.
The history of my dad’s family is ‘Shoreditch boot repairers and needle-women’ not ‘boot makers or seamstresses’.
My mum had two abortions and following each one went out and shoplifted items that signified warmth and security to her; Christmas decorations and steak. Both times she was caught and the second time she had to go to court. When she told me about it she said she wasn’t scared of the sentence just terrified that it would get in to the local paper. She was terrified of the stigma of being seen as a criminal. I think she is a heroine, a heroine for trying to hide all of that pain from us. She didn’t of course, how could she. Somehow I knew this had gone on, I didn’t know what she’d taken or when or that she’d gone to court but somehow the stigma she was so terrified of ended up defining our childhoods. As did my dad’s fear of poverty.
Our lives as babies, children, teenagers and adults defined in large part by the fear of social stigmas from completely different places but resulting in us having ‘limiting lives’. In being terrified of being alive. The stigma of getting it wrong, of being different, of not fitting in. Of being ‘other’.
Three of four of us have had recurrent addictions to drugs and drink and the other has lived in such silent anger that has torn them apart in a way that no one would ever notice. Thankfully in some small way being from a different time has meant that most of us have encountered talking therapies which have enabled us to access our fears and our irrational ‘vats of stigma’ and address them someway.
My parents will have lived their whole lives in a form of one pain or another. In an strange way I relate to this because of the stigma of HIV. Because of the stigma I face being HIV+, because despite my endless rounds of talking therapy, and other holistic methods of mindful wellbeing, society still sees me as an HIV positive woman who is somehow wrong, somehow at fault, somehow immoral. I am trapped by a very real stigma that makes me understand on a very tactile level the stigmas that defined my parents.
Unmarried mothers, divorce, gay sex, weakness, poverty, disability, all at certain points have (and still do) carry stigmas. There is a common thread about stigmas which have a relationship to material worth and a seeming capacity to material production. Stigma seems to be fear-based around the notion that people who can produce their share of material worth have a seamless place in society and therefore ‘fit in’, the rest are ‘othered’ and face stigma.
In its infancy HIV had an absolute link to this thing called AIDS.
AIDS meant death. AIDS meant illness. AIDS meant SEX.
It terrified people and therefore people wanted to distance themselves from it. It seemed to society at large that it was mainly gay men and MSM (men who sleep with men) who developed AIDS, this inconclusive and largely incorrect fact (Sub Saharan data) gave people a way of distancing themselves from the fear they had of AIDS and allowed them to create a stigmatised place into which they could place ‘people who had AIDS and people who might get AIDS (people who were HIV positive).
‘It’s not us’, they would say, ‘it’s them it affects, the others’.
The link between certain diseases and stigma is not new, diseases linked to poverty and sex have always carried societal stigmas but the link between HIV/AIDS and stigma came at a time when discrimination against marginalised groups was beginning to break down and freedoms celebrated. AIDS was used by society to prop up its own fallibility, prejudice and fear and reinforce an ‘other’ which has never diminished.
People with HIV are seen as being ‘not like us’, I am seen as ‘other’ despite whatever handbag I carry or whichever train I ride.
When I was a teacher I had already been HIV for about 15 years, I never told a soul in work. In fact I remember being advised not to, to actively hide it. That it could impact on my working in schools; insurance and legal stuff, people said. I changed my drug regime once and developed appalling side effects which included being sick until I couldn’t be sick anymore. To hide this I went into work early, very early, took my medication in a locked toilet and threw up before there were many people in the building. I never took time off for HIV healthcare appointments, back then I went every month, so every month I’d make up a different reason or ring in sick. When I became ill I asked my GP to not mention HIV on the sickness form, when I became visibly ill I made up a whole raft of reasons why. I used to wonder what would have happened if I had been honest but then about six years after leaving the school a note was put into most teachers pigeon holes saying that I had AIDS and had left to die. The note was anonymous but only official stuff could get into that many pigeon holes.
Many years on but still the same stigma existed.
Stigma; real, perceived or structural is terrifying and defines so much space within society. It prevents doors from opening and slams doors shut, virtual or otherwise, in people’s faces. It shapes aspiration and hope and literally dictates our physical connections between each other. How often after telling someone I am HIV positive have I watched their back walk away, becoming a dark outline that doesn’t return.
‘I’ll call you’, they say. I don’t have a lot of sex.
Somehow the disassociation of AIDS from HIV has never quite happened and despite all our best attempts to talk about it as a manageable and lifelong condition has done little to scythe the stigma from the truths and the stigma from my authenticity.
My blood isn’t dangerous, the stigma is, your view of me is.
As a footnote my mum remembers the navy blue coat she wore to court that day, she told me the details of these events and gave me permission to write about them.
As I said before a complete heroine in my eyes.