STIGMATISATION MUST BE CHALLENGED
This is the fifth of six blogs in the series presenting key elements from Prof Plant’s forthcoming report.
We all think we know what stigma is and have observed or experienced it.
In my work, there are a multitude of stigmatising myths, such as:
- women who drink heavily are ‘bad’ and have low moral standards
- women who drink don’t care about their babies since they think only of themselves
- only ‘certain kinds’ of women have babies affected by prenatal alcohol exposure
- women who drink will be bad mothers.
All of these are myths, not truths. Nevertheless, the stigma experienced by women thought of in these ways can seriously undermine how they are treated by health and social services.
One worry is that a woman who has been drinking, perhaps even before she knew she was pregnant, could end up avoiding regular clinic and antenatal appointments. Why? She is frightened that she will be perceived negatively, and fears being judged or blamed.
Stigma doesn’t just affect the judgement of people doing the stigmatising. It mainly affects the people who are, or think they will be, stigmatised.
For instance, it affects how openly they respond to questions. I found this out when I was developing a survey of 1,000 pregnant women to find out about their drinking, and then following up to ask about the babies. I asked one of the participating doctors whether he asked women about their drinking when they attended his clinic. He said he did. Then I watched him ‘asking’ a woman, “You don’t drink, do you?” Given the negative framing of the question, I’m not sure I would have been brave enough to say: “Well I did have a glass of wine on Saturday, but it was only a small one”. His question (inadvertently, but powerfully) reinforced the stigma.
While having coffee in the antenatal clinic one morning, we talked about some of the women who were seen there. One of the midwives said she only asked certain women about their drinking. For instance, she hadn’t asked the last woman anything about alcohol. I asked why and her answer was, “Well, she was a teacher, and she was well dressed”.
What if that teacher had been concerned about her drinking? How easy would it have been for this middle-class, well-dressed woman to comfortably express those concerns with her health professional? That encounter happened decades ago. Since then, much has changed for the better.
In the first blog in this series, I shared that many of the community nurses, midwives, and health visitors who took part in the 2022 QNIS/HPBL survey on FASD indicated that they didn’t like using standardised tools. Instead, they preferred talking about alcohol in a more general, informal and conversational way. They believed women were more comfortable and candid because they were less concerned about being judged during these conversations.
People often talk about the difference between a diagnosis and a label. A diagnosis is a medical term, while a label is just another way of making someone feel and seem ‘different’. Different usually equating to ‘less than’ others.
I experienced a good example of this in an FASD clinic in Vancouver. A six-year-old boy was attending the clinic with his maternal grandparents, as his own mum had died from alcohol-related problems. His grandmother wanted an official diagnosis for her grandson, since she thought this would help him finally receive access to some needed services and support. His grandfather disagreed. To him, FASD was just a stigmatising label. He saw it as another weapon school bullies could use against his grandson.
What about the stigma often faced by people with FASD? It’s strange, but babies and children with FASD are usually seen as worthy of compassion because they fit the category of innocent victim. Yet, as they grow older, public perceptions tend to change and their diagnosis can take on more negative connotations.
A young man I work with, who has FASD, told me about attending an antenatal clinic appointment with his pregnant wife. (Pause for a minute – does this surprise you?) The obstetrician asked this couple if they had any illnesses or problems she should know about. “No”, he said, and his wife gently said, “Well, there is your FASD”. “Oh, yes”, he responded.
When he was telling me this story, the father-to-be shared that he was so happy they were having a baby that everything else had gone out of his mind. The obstetrician looked at him with a very serious expression and said “It’s OK. I’ll just write in the notes that you’re not violent”! How did this young man go from being regarded as an innocent victim of someone else’s behaviour, to being reduced to a line in his wife’s case notes reassuring other health staff he is not dangerous?
In my opinion, stigma is never helpful. It excludes, demonises and misleads in ways that cause harm and unfair prejudices about who someone is and how that individual should be treated. Whether applied to women who drink, or young people and adults who have FASD, stigmatisation must be challenged in the short-term and eventually eliminated.
What examples of stigma does this blog bring to mind? What advice do you have about dealing with them?
Please feel welcome to share what you think at HPBL@qnis.org.uk or via @HPBL_Scot.
You can read the other blogs here:
- What is a Unit of Alcohol?
- Who is most likely to drink during pregnancy?
- FASD Across the Lifespan: Physical Problems
- FASD Across the Lifespan: Behavioural Problems