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What's in a Name? My Perception of 'The Perception Syndrome'

By Mary J. Strong

I read with interest Bill George's article titled 'The Perception Syndrome' in issue 39, Autumn 2010, on the subject of lessening stigma by changing the name of the diagnosis schizophrenia to a different one, such as 'The Perception Syndrome'. I myself suffer from schizophrenia, and it's not easy being schizophrenic with the stigma. The article seemed very positive about the ability to change peoples' negative attitudes towards sufferers like me, but I just don't think that changing the name of schizophrenia to something else is going to help in the long-run.

What the article doesn't touch on is the fact that 5% of people with schizophrenia also have violent tendencies, and that's more than the national average of 1%. The only reason that schizophrenia makes the news is when someone gets attacked or killed by a schizophrenic. So what if you change the name? All that will happen is that then it will be people with 'Perception Syndrome' making the same headlines, and the general public will cotton on to the fact that it's schizophrenia under a new name. Even if they don't, they'll still associate the 95% of non-violent 'syndromers' with the 5% that make the headlines and nothing will be achieved.

Eastenders will have the obligatory 'Perception Syndrome' sufferer, as will Casualty, Holby City, The Bill, and every other crime drama going, to portray 'syndromers' in the same negative light that schizophrenics always have been. I don't hear from people who have Bipolar Disorder that stigma has been reduced significantly since changing the name from Manic Depression. There's still stigma for that, despite high profile people like Britney Spears being known as sufferers. Britney may be a bad case to mention – I'm sure some of her behaviour has only put fuel on the fire of stigma. (Don't get me wrong, I personally feel really sorry for her.) But I will concede that maybe in a few decades' time the situation may change for bipolar sufferers, through re-education of the masses and the 'coming out' of 'relatively normal' sufferers like Stephen Fry, who has managed to hold down jobs that suit his illness.

However, I don't think that the same would happen for schizophrenia, for the reasons I've mentioned. When was the last time that someone bipolar made the headlines for attacking or killing someone? I can't think of a single occasion, but I can think of dozens of schizophrenia cases over the years. Five per cent might as well be 100 per cent in many peoples' minds. Even if there was a re-education program over this, how are they to know whether you're one of the 5% or not? Is there going to be a distinction in naming the condition for the people with the violent tendencies? Imagine if that was the case – say you had 'Perception Syndrome' as a starting point for everyone and then if someone committed a violent act they were relegated to the diagnosis 'schizophrenia'. What are 'normal' people to think then – just because someone's a 'Perception Syndromer' doesn't mean they won't become 'schizophrenic' in the future?

This is an important issue to tackle, because in order to combat the stigma, the public must feel safer, and not feel that we're 'at large'. The ramifications are not trivial. In order to make the public feel safer, professionals would try to second-guess who could become violent.

I for one would not feel 'safer', because when I get ill I get agitated and can shout and scream because of it. I don't like the idea of people interpreting my agitation as aggression or a violent tendency. I know myself, and that I'd never hurt anyone – I'm only ever a danger to myself, but other people might not view it that way, because it can be quite alarming. I can't be the only schizophrenic who gets agitated. What if some high-minded professionals under pressure to make the public feel safer wanted to interpret agitation as aggression? Or what if 'concerned' members of the public felt the same way? Where would it all end? Dear, Oh dear...... I suppose if my psychiatrist was reading this he'd tell me to reach for the tablets, to combat my 'paranoia'.......

But seriously, what if concerned members of the public felt that the professionals weren't doing a good job of classifying the 'real schizophrenics'? Would the public feel safer anyway? Wouldn't it all just be a big botched social experiment?

And wouldn't the government want to use the experiment as more leverage to try and get us into work and off benefits, because they think that social stigma can be reduced, so workplace stress may be reduced, alongside the 'protection' of the Disability Discrimination Act? (The DDA is supposed to give people the right to have their job stress aligned to their abilities if they suffer from a disability, such as schizophrenia, as well as protection from general discrimination.) Well, in order to know whether the stigma has been reduced, you actually have to put people in the experiment of being the first to brave the world of work under the wings of the 'Disability Discrimination Act' – another botched social experiment. I worked for a while, was discriminated against by management, took my employer to tribunal under the DDA and lost. That's because as the complainant, the 'burden of proof' is with you to prove discrimination on account of your disability, not for your employer to prove that you weren't discriminated against for any reason related to your illness.

It's not beyond the bounds of reason to imagine a case where you were being discriminated against, and needed witnesses to back you up, but they won't do that for whatever reason – fear of reprisals from management being one. But you know that you are being discriminated against.......But wait, the professionals and everyone else tell me I might be just paranoid.......but how do they know that?......I'm being told I'm getting ill again......wait, wait, I was told it was all going to be okay now......but I know things at work just aren't right.......

....OH SH!T, now I'm under section again and too ill to be holding down a job......Is this really what I was promised? Was it all worth it? Do they expect me to go through all that again, because now 'Everything's going to be okay'? The point I'm trying to make is that the Disability Discrimination Act came into force, but you can't really make a law against peoples' attitudes, plus it can be difficult to prove that their attitude towards you is because of your illness. And little things can add up. After the tribunal, when I sometimes had time off work to get suited to medication or to see doctors, people only moaned that I was having the time off. If you're different in ways that mean you get treated differently for reasons you don't want to talk about, guess who gets the fallout from colleagues? It all just adds to the stress of work. I don't want to repeat the process.

And yes, after losing my tribunal case, I went on to get seriously ill again from stress and had to give up work. I couldn't face work again after being sectioned. Even if I'd proved discrimination on the basis of my diagnosis, I was going to have to fight to prove that schizophrenia was actually my diagnosis, so that I was ill enough to be taking them to tribunal under the DDA in the first place........Don't get me started on the subject of the Disability Discrimination Act!

But maybe I'm wrong about trying to rename schizophrenia. I'd love to get a discussion going about it, and see what other people think. In the meantime, I think it's a situation fraught with difficulties, and just don't see a way of squaring the circle, with social justice for all.