Breaking the Stigma Lessons Learnt from Caring for People with HIV and AIDS

January 2021 saw the screening of Russell T Davies’ “It’s A Sin” – a drama about a group of young people in the early days of the HIV epidemic living in London during the 1980s.

One character develops HIV-related dementia (not named at the time) – he is locked up alone on a ward – this shocking incident is based on a true event, as are many scenes during the series.

People living with HIV at that time faced huge levels of stigma and discrimination, given labels like:

  • Sufferers
  • Dirty
  • AIDS victims
  • Riddled
  • Perverts

Some of the conditions caused by damage to the immune system were disfiguring, such as Kaposi Sarcoma (a type of cancer, causing lesions on the skin, including the face); thus, making the person’s condition impossible to hide.

This often led to rejection, discrimination, a sense of isolation and being ostracised.  The series vividly depicts the physical and emotional pain of the time – people dying, abandoned by their families, an overwhelming sense of death and helplessness.

So, what has this to do with dementia?

Growing up at an ‘old people’s home,’ I remember, aged 8, one resident packed up to leave. Confused, I asked why. A care worker explained the woman was going to ‘’Whitchurch’ – as an adult, I learnt this was the local asylum.

The stigma of her dementia meant she was being sent away somewhere to be forgotten (not dissimilar to those with AIDS in the early days). This was around 1976; dementia care has improved greatly since those times. However, I was struck by the comments of a colleague some years ago:

“Care homes shouldn’t be islands of the old.”

It could be argued that people with dementia in 2021, are ‘forgotten in care homes,’ just as they were ‘forgotten in asylums’ back then. Has the stigma truly gone away?

I still visit care homes or hear staff during training refer to people living with dementia as:

  • Victims
  • Sufferers
  • Demented/dementing
  • Wanderers
  • Biter/spitter/kicker
  • Not all there
  • Aggressive

These labels often unintentionally cause harm. They serve to characterise a person by their condition or their behaviour. Indeed, what should be supportive care, is described as: feeding, toileting etc.  – almost as if we are ‘doing to’ an inanimate object.

I once overheard a staff member say: “Room 12 needs to be dressed.” Where is the humanity in this? Where is the person?

One label I particularly dislike is “dementia people,” for, like “AIDS sufferer,” it puts the disease before the person, focussing on the negative. A person will have been many things in their life before dementia came along. Why is it still not universal that we use the term: ‘person living with a dementia’?

Language is important. The labels we use to describe others often increase their sense of stigma and shame. Indeed, I would suggest that people often internalise that stigma and it affects their well-being, self-image and self-esteem.

Most stigma comes from a fear of difference, of illness and our own mortality – a way of avoiding our own human sense of vulnerability. However, once we start to ‘other’ people and focus on difference, we risk failing to connect as humans.

Stigma comes in many guises, one of the most obvious is the language that we use to describe others. We can either ‘other’ them and dehumanise them with labels, or we can treat them as equals with dignity and humanity, always remembering that we are working person to person.

In other words: labels are for parcels; not for people.

MIKE PHILLIPS
Associate Trainer
MCM
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