What Does Stigma Feel Like?

Thought for the Fortnight

Stigma – it’s a word that we see from time to time, but I suspect very few people really stop to think about what it means to live with it in practice.

We know it has something to do with being treated differently and being on the wrong end of shame, but beyond that, it really isn’t anything most of us meet very often. It seems like it belongs in the distant past, rather than in our 21st (or 20th) century day-to-day lives.¹

Stigma also feels like it must be experienced as something major, almost Biblical. Plagues of locusts and the like. Public stonings. Or back to the public stocks. But it is not like that at all. Those who are stigmatised tend to experience small or not-so-small slights that blight their day and, if frequent enough, add up to a lot. They know that they don’t belong, that they are not welcome. Indeed, the word ‘ostracised’ is not too strong.

This post is another in a series of posts setting out passages from interviews with someone I interviewed as part of my research over the years, in this case a young man diagnosed with HIV in 1991.

Stigma was very rife during the AIDS epidemic in the 1980s and 1990s, and for readers active in that period, the contents of this interview may be all too familiar. For others, the key issue is that for a long time there was no cure for AIDS and many millions of people (over 42 million world-wide) died. HIV was the virus that led to AIDS. Here, as is often conventional, the two are conflated into the term HIV/AIDS. A diagnosis was often described as being ‘HIV-positive’ or even just ‘positive’.

The stigma attached to people with HIV/AIDS stemmed in part from simple fear. Rather like Covid, people were frightened of ‘catching’ it and were uncertain about how to avoid doing so. If they were so diagnosed, it was virtually a death sentence. But unlike Covid, the two groups most commonly diagnosed with the disease (homosexuals – seen at that time so differently from today – and drug addicts) suffered from stigma in any case. All of which made the lives of people living with the disease – already very difficult – even worse.

This interview is with a young man with a strong character, great charm and dedication to helping others. I call him Danny. The interview was undertaken in 1991, one of many with people with HIV/AIDS from around the world, all attending an international conference in London. 

Danny was 32 and from Northern Ireland. He was unemployed at the time of the interview, having just spent four years studying theology. He had hoped to be ordained as an Anglican priest, but his ordination was deferred on the grounds of his homosexuality. He was seeking to have this decision overturned.  

He raises other issues besides stigma, including the difficulty of knowing when to tell family and friends about the diagnosis, but the stigma shines through loud and clear.

Danny's diagnosis was very recent, less than a year before the interview:

I remember it exactly, probably always will. The doctor said to me, “As you know, Danny, we took some blood.” I said, “Yes, I was here when you took it.” And he said, “Well, we had the results back and I'm very sorry to tell you that it's highly probable that you are HIV-positive.”

It was as if somebody kicked me in the balls. Then I thought, hang on, what do you mean “highly probable”? It took me three times saying I wanted to know before he said, “Okay, the results of the test are positive.” Although I'd more or less convinced myself that it was possible I was positive, it didn't really prepare me for hearing those words.

I had gone for the results with a close woman friend. I went back to her place that night, to her and her partner. I intended to get totally drunk, but no matter how many drinks I downed, I couldn't quite make that stage. Who? Why? What's going to happen? 

Danny describes how very difficult it is to tell other people about his disease – friends, partners, parents and so forth:

The first people I told was the faculty at my college, because they were people I trusted. They'd seen me through the ordination being put off and stood by me. We disagreed very strongly, theologically, with God's view of sexuality, but when I needed their support they were there. I couldn't have wished for more from anyone, both faculty and fellow students.

When I was first diagnosed, I was in a relationship with another bloke. We'd been together for a number of months. And although we practised safe sex, the first thought that came into my head was, have I put him at risk? When I told him, all he did was get up and just hold me for about twenty minutes – which was fantastic.

I haven't told my mother and brothers. The three of them know that I'm gay – that caused enough problems in itself.  I went home this Easter for a week. And when it came to the Wednesday and I hadn't told them, I thought no – to dump this on my mother now and just leave would be an awful thing to do.

It's a difficult thing. What I don't want to happen is that in three years time I become ill with something like pneumonia and end up in hospital. I don't want my mother to find out that way. That would be horrendous. But if I tell her now and then go on for the next ten years being healthy, will she spend those years in fear and trepidation?

And one effect of telling people was that relationships could change. This could come from just being homosexual, because of its association with AIDS:

Three years ago my brother wouldn't let me see his kids. That tore me apart. I'd arranged to meet him at his home, to be there for the evening. He met me in the middle of the road and said his wife didn't want me near the kids, she's afraid of AIDS. He said, “You're a queer – queers get AIDS, don't they.” I left him, went into town and just got totally wrecked.

But this became more common, once the diagnosis was public:

Some of my close friends suddenly wanted to wrap me up in cotton wool. It was as if I became some china doll that had to be treated gently.

I was known at college as being one of the more controversial figures. I revelled in that. I'd be forever challenging people about issues to do with unemployment or race or sexuality. I loved getting into heated arguments at times.

Two people in particular, I noticed that their whole tone towards me changed, they wanted to “care for” me. I didn't need to be cared for in that way. I said, “Listen, I'm still Danny, I'm not ‘Danny-HIV-positive’, I'm Danny.”

On one level, it was good to know their desire to shield me from other people's ignorance and fear. On another level, I'm a fighter, born into the civil rights movement in Ireland and brought up with protest almost running in my veins. It was the possibility that that part of me could have been lost. They became like the parent and I became the child.

But I was able to say, hang on a minute, I'm still me. I still enjoy stirring things, I've spent my life breaking out of closets and I'm not about to be shut into another closet called HIV.

There was always a fear of prejudice and rejection:

I get paranoid on occasion, I think I overhear or see the odd kind of look, as if people are talking about me, people who I'm not close to particularly. I refuse to keep my HIV status under lock and key. I'm not broadcasting it from the rooftop, but one of the things about HIV and AIDS is the stigma and the loneliness and isolation.

I used to run a play school. I really love kids. Often, the mums would be a bit harassed and they'd say, “Here Danny, take this little so-and-so off me hands.” And I'd take the child and look after them, while mum went for a walk. Which I loved. Sometimes, when the kids were coming through, before they'd get from A to B they would have to crawl all over Uncle Danny. You'd see me crawling under the tables chasing the kids.

One day, just after my diagnosis, I was doing that with one little kid and the thought hit me ­­– how would his parents react if they knew I was HIV-positive? And I froze, it was a horrendous thought. Then I thought, no, I'm not going to let this child suffer. He's used to me chasing him around, he looks forward to it and I enjoy it as well. As for the parents, I don't know how they'd have reacted, because they didn't know.

And sometimes nothing happened:

There is a married couple who I'm very close to. I told the husband I'd been diagnosed HIV-positive. The next day, his wife came with her child Jim around the corner and she said “Look who's here, Jim,” as she did every morning. And Jim came tearing round, “Danny, Danny, hug”, arms in the air. There was nothing out of the ordinary. Just this woman being the same with me as she'd always been. I walked away feeling twelve foot tall.

Danny found he needed to come to terms with himself:

When I was first diagnosed, I felt very angry at myself, that I had been stupid enough to pick up HIV. I should have been practising safe sex for at least five years.

In one of my counselling sessions, the counsellor piled on top of one another five telephone books. She gave me a piece of wood and said, “Anger doesn't have to be a negative thing, it can be healing, but only if you express it.” I started to hammer into the telephone books – and it was frightening, the rage that was in me. It was directed against me.

My feeling about myself has changed. Overall, I am a wholer person today than I was this time last year. HIV brought out all kinds of issues – things that happened as a child – I've been able to look at them. I like being me. The God I believe in doesn't make mistakes.

The Jesus of the gospels and the Jesus of the Church so often seem two different people. Some parts of the Church even go as far as saying that AIDS is a plague sent by God. But those who think that haven't met my God. That's blasphemy, to say that God is a despot, playing germ warfare with sections of humanity, it's blasphemy.

I'm going to go ahead with the ordination. I've been on the road to ordination for eight years and I'm not about to fold up.

As far as I know, Danny died a few years after this interview, as did almost everyone else we interviewed.

If you want to read more about people with HIV/AIDS, see my book, Wise Before their Time: People with HIV and AIDS talk about their lives, first published in 1991 and re-lauched in 2017. It has a Foreword by Sir Ian McKellen in which he states “This collection of stories is as powerful as any great classic of fiction.”

Did you ever have any experience with people with AIDS? Have you or someone you know experienced stigma for some other reason? I would love to hear your thoughts on this interview and on the nature of stigma.

1. By coincidence,

Nan Tepper

wrote about her experience of stigma this week, in the context of childhood epilepsy.