Talking about stigma’ it is a well known fact that many in our community are ‘mental about mental illness which is why the majority of carers stay ‘hidden. We talk in whispers about schizophrenia just as they did about cancer not so long ago. We are ashamed to say that we care for a mentally ill person at home. We avoid attending carers’ support groups where there is someone there you know or is from your community or is a neighbour. Relatives and friends avoid us (equally we try and avoid them) and the lives of siblings are blighted with the prospect of finding a life partner becoming a serious problem because many of us think that mental illness always runs in families.

Asian communities, you know, the language unfortunately doesn’t change in the Asian community as it does in the recent mental health services. As a worker, -so we will say ‘people with mental health problems’ rather than, ‘mad’, or whatever. But I deliberately used the word, ‘mad’, a few times in my conversation because I think someone, a professional, not within mental health services but from outside said that, you know, as a mental health service worker I might say that, Oh the English language has changed and it’s got, -it’s much better at expressing people, you know, and not condemning people with mental health problems. But he said that, if you go outside in the community people will still use words like, ‘mad’ and ‘nutter’, and all kind of derogatory terms. But to me, because the Asian languages don’t have good ways, at least in England as, -because I’m also now really far from my own culture, back in India or wherever, that maybe it has changed. But I don’t know about it, so my concept is still the same, that maybe the community still consider everybody in the term of, ‘mad’, rather than somebody having mental illness really, so.

It needs to be revamped and changed and lots of things need to be taken into account about how we view, how everybody sees mental health and how we view it, you know. Even simple things like advertisements on the TV and stuff like that just to make people be aware of things. A lot of people are not aware of lots of things that’s going on. They’re not aware of diagnosis and helping people and they’re just not aware of things and it’s about, you know, knowing that you might have a five year old and that five year old is able to see that somebody isn’t quite normal and there’s reasons why instead of it being fun or some pointer or ridiculed or whatever or they’re not knowing how to deal with it because it’s part and parcel of everybody’s every day life. We pass somebody in the street lying there whos down and out or a vagrant or whatever, or somebody that’s eating out of a garbage bin or somebody that’s, you hear on the news -and that’s the time you only hear it on the news when people have mental health problems and have done something terrible and to think that there’s thousands and thousands of people who are coping with mental health problems and it’s only when the negativity arises that it’s addressed and this should be done and why wasn’t this person in proper care and that kind of stuff. And I thought how dare anybody question that when there isn’t anything there to look after people who are going through that, there’s nothing there for the carers, for myself and for other people that every day have to go through this system and try and be heard, there’s nothing there really.

I mean, the culture that I come from, I think that is a big problem in the sense that everybody knows that if you’re here you’re here for, eh, there’s a reason you go to England and you do something for yourself and, you know, at times, as a carer, you get, you feel that people blame you as a mother, maybe where did you go wrong, or is it your fault, or did you bring him up well enough, or are you doing something wrong that’s making him do such things and I think as an African I get the blame most of the time, that people feel that it may be the way that I brought him up.

And is that within, the interpretation within African culture, that this, that the blame is put on you? Can you say a bit more about that, what is that linked in with in African culture, do you think?

As I say, the mental illness is not a sort of hereditary thing, and there’s no-one’ in that they feel, -I think my family back home feels that maybe because people know or understand that children in this country are not disciplined, they understand, and so they do what they want and they will drink and they whatever, so maybe you were not able to bring them up well enough, to be able to understand and the sort of lifestyle that has made them the way they are. So, they always say, oh you have to bring him home, you have to bring him home, but they also don’t understand that you cannot force anyone under 20 years old to say, go in a plane and go away. You know, so, that becomes hard and as I say, most of the people that I know, that come from the same background as I, or I know from my cultural background, I don’t talk to them about him, because I know that they will always have something negative about the whole situation, that hurts, so.

Yeah, there is this thinking going on that there are certain people in, you know, this is more like Eastern, Indian thinking, when there are certain people who have got the evil eye, so to speak. And they can cast, you know, if they’re jealous or envious or not happy with you, if you do something wrong to them by, maybe sometimes they come begging for food or something or the other, or whatever. And if you don’t give them whatever they want then they can cast a spell or curse on your family or on you. And, -or if they see, sometimes it’s, like a little child or beauty, if they feel, oh someone’s very wonderful and beautiful, or a little child’s so lovable, then they could cast that as well, you know, as a curse maybe.

I think it’s laughable. Because if you look in the Bible there’s a book called Job, and he was somebody that was a real righteous man, didn’t do anything wrong. And then suddenly everything went wrong in his life and he lost his wife, his children, his job, he’d got a really bad illness and his friends, four of his friends came along and sat with him for about seven days, watching him in complete and utter agony. He’s lost everything and he’s in such pain. And then after the seven days they go, ‘Well we can’t work this out but this’, they said, ‘Well it must be something you’ve done wrong’ etc. ‘And you must do this and you must do that, and that’s why you’re ill because you’re not thinking right. And you’ve obviously got problems with your emotions and you need to sort them out. And they started condemning him and judging him. And then in the end when God turns up, God says to them, you know ‘You’ve got it all wrong. So that has really actually encouraged me in the past, was I thought, these people that think somebody’s mentally ill because they’re, got a past sin or they’re not, they’ve let the devil into their lives, or they’re not praying enough or something, it just doesn’t stack up with the rest of the Bible at all. So I actually feel sorry for them because I think they’re like Jobs comforters. As I say, that where they’ve just turned it round because they can’t understand themselves. And it’s quite sad that they don’t actually want to learn about mental illness and actually help people.

If the samaj (community) laugh at you, how have you coped?

With the samaj, my samaj don’t know about this at all. I will tell you this. At the beginning -and I will not let the samaj know either, even my brother does not know. This, they way I cope, she does not do this with other people. What is happening, occurs with me not with other people. Sometimes when she does something wrong I will sort it out and cover it up, so it is not known to anyone. I am always with her. I avoid the situations where other people get to know.

What are reasons for why you do not want people to know?

The reason for letting people know is, my wife does not like it. Then she thinks more about it. She will think, ‘I am like this, I am a failure and I am like this, -is that why people are talking about me?’ So if she finds out about this and at this moment in time, in her brain, it can be damaged a lot more. At the moment, the way her mind is it will have more of an effect. You understand? So we, the way I do things is to ensure that there is less effect on her. That she remains happy and less effect on her. What happens this way is we are all well. If you ask her to stand to face this, she will feel, ‘Why me?. If you keep telling her about one thing that is bad and keep repeating that, then it will get worse. So why would we let other people know? So people can look at her in that way. You understand?