What’s in a label?

Cassandra* is one of our lived experience consultants. In this blog, they look at the benefits and disadvantages of assigning labels to people.

Systems seem to rely on labels. In fact, people generally seem to have a need to put labels onto other people or squeeze them into a box.  In reality, human beings are complex, but systems do not always seem to be able to cope with complexity.  This is sometimes why people experiencing multiple disadvantage find it difficult to access the support they need.  What happens when you overlap systems and don’t fit neatly into one box?  You get passed from one service to another or slip through the cracks.

I’ve received a lot of labels in my 34 years, some of them have been helpful, some, a lot less so.  In my opinion, labels are a crude short-cut to trying to explain something about you to others. However, in order to be helpful to the individual, labels need to either lead to some treatment or help from the system or allow that individual to gain a better understanding of what is going on for themselves. 

Physical health issues are an area where it is easy to see the point of labels. For example, I get migraines and it was over five years before anyone realised that this was the case.  Once diagnosed, I could finally start to receive some treatment to control them.

But other labels are a bit more stigmatising or “loaded”.  In my experience, mental health labels are much more complicated and sometimes actively harmful.  Let’s take my diagnosis of Borderline Personality Disorder for example. This label was given to me without my knowledge and with no discussion.  In this instance, the system put me into a box based on what they believe my experience to be. I was given this label because I was displaying “challenging behaviours”.  But how useful has this diagnosis been to me? Well, not helpful at all. It didn’t give me access to any treatment and gave professionals licence to dismiss my difficulties and me as a person for being “too challenging”. 

I’ve also found that services can really hold onto certain labels.  I have a history of substance abuse. Even now that I am clean and sober, I still have that “addict” label on my file.  How can the system expect people to move on and lead a more fulfilling life when your present is always being overshadowed by your past? 

In contrast, I have had more positive experiences when I have been asked for my opinion and when services have slowed down to really consider the complexities rather than a quick fix diagnosis.  You are more likely to challenge your unconscious bias if you take slower and more deliberate decisions but, the pressures on the system sometimes make this almost impossible for practitioners. 

A couple of years ago I went through the comprehensive assessment needed for an Autism diagnosis.  It was 5-6 hours of various assessments, chats, tasks as well as them contacting my family for further information.  They really thought about what they were doing and listened to my opinion.  The entire process enabled me to understand myself better and has really helped the system to respond to me in a more helpful way.

Recently I have also had some better experiences with services acknowledging my trauma and the impact this has on my life. They recognise that maybe my behaviour isn’t simply “challenging” but a response to what I have lived through.  Maybe, I am just trying to survive.

These experiences have made me more positive that we, as people of lived experience, can affect system change.  Where there is good practice, this should be showcased as an example of what can be done. Where labels and the diagnostic process are positive, let us examine why so we can help services with poorer practice understand how they can learn and improve. 

I am not saying that we should never accept or use labels but, we need to use them carefully and realise that no label sums up someone’s total experience.  Remember that when you’ve met one person with multiple disadvantage, you’ve met one person with multiple disadvantage. We are individuals.

*Name changed to protect their identity.