Niabingi - Interview 01
More about me...
Niabingi began hearing voices at university. She thought it was “telepathy” and a “natural” part of growing up that everyone knew about but kept secret. Niabingi was hospitalised and eventually referred to a specialist mental health hostel for people from Black and Minority Ethnic backgrounds. Here, she was diagnosed with paranoid schizophrenia (she disagrees with the paranoid part).
Niabingi describes hearing voices as like “a song that keeps on coming into your head, no matter what you do”. The voices tell her about life and conspiracies and advise her how to live and what to eat. She sometimes thought she was talking to God and considers her experience to be a spiritual one. Niabingi can't control these voices, and she can always hear them.
She has tried a range of antipsychotic medications but would prefer to not have to take any medication and considers them to be toxic. They cause a lot of side-effects, such as insomnia, feeling sick, and dribbling. When visiting the Caribbean, she is described as having “the nerves” and given herbs. One year, she replaced the prescribed drugs with homeopathic medicines, and found them to be “just as beneficial” for controlling the voices. She has tried to manage without any medication, but has come to accept that this usually leads the voices to become “more prominent” and “scary”, and she stops eating and caring for herself. She has been hospitalised several times.
The specialist hostel helped fill a gap in Niabingi's cultural identity by giving lessons about black history and literature. Niabingi believes that her mental distress was caused by the racism she experienced when growing up. Her white middle-class psychiatrists did not ask about her experience of growing up in white Western society and were not open to her trying alternative forms of healing (such as diet, exercise, Caribbean herbs, homeopathy). So, she sought out black mental health professionals. She believes that there should be a space for people of the same culture to meet and share their stories.
Seventeen years on from her diagnosis, she wants people to know “there is life after being diagnosed”. Niabingi lives in her own flat. She still attends a day centre, and she occasionally does some “user involvement” work.
She's ambivalent about taking an antipsychotic; although she realises she needs it she feels she...
She's ambivalent about taking an antipsychotic; although she realises she needs it she feels she...
When I get very tired on the medication, I get very tired you know, I mean you know, after I get very tired, I don't sleep well as well either, I suffer from insomnia, I have done for the whole of the fifteen years that I've been taking this medication which means that you know, I'm, quite often don't, you know, don't sleep well you know, and I'm always tired. as I think I've mentioned before I, sometimes I shake, I can't sit still I, you know, at night time I have dribbled, you know, just saliva, just you wake up and the pillow is wet and all that kind of thing if you are sleeping. You know, you get terrible side effects and the doctors don't like to, I mean I have to say this they don't like to hear, the doctors and professionals in mental health they don't like to hear you know, that the medication is, you know, there's anything you know, sort of detrimental about the medication. When not only does it give you terrible side effects but I mean seven out of ten I mean because I wanted to change my medication a while ago and I said to my doctor, 'I'd like to change my medication,' and he's very good, you know, he's not too bad for you know, a white middle class man you know, attending a Caribbean woman, well you know, second generation Caribbean you know, he can be understanding but he just you know, , you know, so you know, I give him credit where credit is due. But , so he brought in a load of information about other medications and I just surprised to hear that seven out of ten of them cause, you know, affect the heart, cause murmurs in the heart and all other kind of things and three of them actually cause you know, stroke or heart attack or something like that. And you know, they're giving you this and you know, it just, I mean you know, they're just, I mean you know, they're just, I know they're just sort of handing out death to really and I mean. And there are I think, I think people with mental health problems apart from suicide live something like that 10 to 11% shorter lives than the average person in the population. So you know, it's just, it's, it's you know, and you've got to take this knowing that it's possibly doing some good to you, giving you some kind of normalisation to your head but it's destroying your body and you know, how long are you going to live on it? And you have to take it for you know, the rest of your life, that's what people are saying. So you know, I mean you've got all this to cope with and first these crazy episodes when you're doing mad things, it's a very depressing world.
Niabingi realised that racism had played a part in her developing schizophrenia when she stayed...
Niabingi realised that racism had played a part in her developing schizophrenia when she stayed...
Well for me that was, that was a positive experience because I hadn't, because I think they thought, one of the diagnosis apart from anything else that had happened you know, in my life and my background they said a lot, that some, some, that my, so you know, what contributed significantly to my mental ill health, and I will use ill health rather than, or mental distress because that would be very good in this case, was, was racism. And you know, you know, you know, you know, that I, looking back I things I think that that was quite an accurate diagnosis'
Well in, in, the name calling, it was just the name calling that was just, I mean you grow up with that sort of thing you know, this, at school and all that kind of thing like coon and all that kind of thing, you know, the N word. and then there was you know, then there was you know, sort of attitudes at, well at school a lot of my friends and myself were told we were only good enough for factory jobs, oh yeah we were only good enough for factory jobs, do you know what I mean you know, things like that. I know of a lot of , males in my generation where we grew up that weren't allowed, you know, just a little bit older than me, about four or five years older than me who were told they weren't allowed to take O levels because you know, they weren't, you know, they weren't intelligent enough. And they've gone on later in life to get degrees so you know, there was that. Then you know, there was, then there was going for a job when you did leave school there was going for a job you know, you know, just never getting the job, just never getting a job you know, like a shop assistant or something where you're going to be seen in public. If you were in the back stuck in, you know, stuck in the stockroom that would be alright but not on the shop floor. sort of you know, the, and just generally knowing you know, growing up you know, you know, being told, 'Oh.' You know. I mean where I, I grew up there was only two black people on our road and that was, yeah and the other black person was the only house I went into, you know, the neighbours didn't really talk to me, they didn't invite me in, they didn't let their children play. Well sometimes some of the children played with us but in general it wasn't you know, an easy, you know, you hear about all this thing on EastEnders oh you're in everybody's else's house and everybody's else's business you know, it just wasn't like that, it wasn't like that growing up, it wasn't like that, not for me anyway.
And you know, so you know, and then you know, obviously you've got, you know, your parents sort of telling you about their experience and you grow up thinking that and you live according to that, you know, you don't overstep the mark, do you know what I mean, you live within your boundaries so you know, so you don't get attacked or something. I remember, I remember sort of like you know, sort of growing up and seeing you know, in those days, I mean now it's the BNP but in those days it was the National Front you know, having you know, and you know, growing up thinking oh don't go down there because that's an area where lots of them live or you know, or you or you know, so, you know, or you know, or you know, or they'll be around tonight be careful and all that kind of thing you know, living in fear. You know, that's just, you know, and you're a little child growing up, you've got, you know, you can't explore your world. One thing about, you know, children they need to explore their world and identify with it, you know, and, you know, and you're cut off from half of it, you're told, you know, this is n
Niabingi compares professionals with a plaster - they help people to heal. She says listening and...
Niabingi compares professionals with a plaster - they help people to heal. She says listening and...
And if, and even if you don't, if you're having difficulty identifying, just try and listen, I know you've probably heard this a thousand times but, you know, just try and listen to what they're saying. Make them feel comfortable enough to tell you what they need to heal themselves because, you know, I mean I think the service is a bit like a plaster, you put the plaster on top of a wound but really the healing comes from within the body, you know, it is, you know, the plaster might cover the wound from infection or something but the healing always comes from within the body, the plaster can't actually heal. So, so the services and the professionals are like a plaster they're, you know, they sort of sit on top and aid the healing, they aid the healing but the healing will come from within that person themselves. So remember that, you know, you're not doing the healing, you're just helping and aiding that person to heal. So listen to them, generally make them feel comfortable about expressing themselves enough to say what will heal them, what is ailing them, what will help them.
Niabingi describes being in hospital and how it prompts her to ask "what is wrong?" and often...
Niabingi describes being in hospital and how it prompts her to ask "what is wrong?" and often...
But yeah I've done art groups, I've gone on trips. Oh yeah they had video, they had video or sort of video sessions sometimes like they'd get a video or what would be a DVD now and you know, the patients would, us patients would sit down and watch a popular movie or something like that which would be good, it would be interesting you know, that would be good. games, so sometimes there would be games to play like I didn't play any games but some of the patients would play, other patients would play chess or draughts together, and at one point in the hospital they had pool so that was very good you know, and the staff would sometimes, the nurses would sometimes play pool with you. and one occasion a nurse actually helped me and did my hair and you know, told me to get in the shower because personal hygiene is something that suffers for me when I'm ill' So you know, that, that you know, that, that's generally all you do but really it's, a lot of the time is just sort of like you finding things that will pass the time till, you know, you get better. And there is a difference, I mean the voices stop, I start to think clearly again. They don't go away completely but they become less forceful and less, less prominent, less loud and you know, I start to take an interest in my appearance again. Yeah.
So what is it about being in hospital that helps you to get better?
Well I think it's the stark realisation that you're, you're, 'cause you're in hospital and hospital is always this, well for me anyway, I don't know about anybody else, I presume possibly it will be the same for everybody else but for me I associate hospital with being ill, so once I'm in there I think right this, there's something is not well, 'cause I'm in this place where people are usually very ill and usually might even die because they're so ill and as I start to think well then okay something is wrong, now what is wrong? Now then I start to say well they're telling me that you know, these voices that I'm hearing are not right you know, they're not, I'm not supposed to be hearing them so then I sort of like work on trying to not hear them. So, and you know, take the medication because usually when I've gone in after the first occasion it's because I haven't taken the medication because I don't believe it helps because it's got a lot of side effects you know, that, you know, I can't, insomnia, it makes me feel sick, sometimes I dribble and sometimes I shake and all that kind of thing so you know, if I could possibly get by without it, which I have tried to do, I'd like to. But I don't think I can now, I've come to the co
Niabingi was injected because she stopped taking her medication and says she felt undignified,...
Niabingi was injected because she stopped taking her medication and says she felt undignified,...
and I've also had a stable mental health team, you know, I've only just lost my CPN, I think it's been, how long has it been now'? It's been about three or four years that I haven't had a CPN but my social worker and psychiatrist, my shrink have been with me coming up to ten years so they know me now you know. And if I say to them well I don't feel like taking the medication you know, they'll say well you know, you should, you really should but you know, you know, you know, we can't force you but you know, you could get ill or you'll go into hospital, you know, you will go into hospital. But I mean they don't sort of insist you know, it's, it's, it's you know, they don't, they, I mean now they don't call me non-compliant, they just understand, they just, they understand that I've been trying, you know, because for me to get back to normal, to really get back to normal, because what used to sort of upset me was that people would say you were well you know, but you'd still be taking these, these drugs, these drugs, these tablets or you these, or having this injection and people who are well don't take tablets and drugs so I'd say well how well am I? So what I tried to do was to get by without the medication' [Begins to cry] So because that would signify that I was properly well, so I think they understood after a while that I was just trying to get a bit better [Crying].
Niabingi says there should be more funding for Black health organisations, more consultation and...
Niabingi says there should be more funding for Black health organisations, more consultation and...
So' yeah and then yeah well that's basically it, you know, things like I'm not sure what have I heard for, you know, well sort of, and I think something that I've heard quite, quite often is a place of our own, you know, BME communities talk about just a place of their own where they can chill out, you know, like women have a women's group, children have a toddlers' corner, do you know what I mean? You know, just somewhere we can chill. And not somewhere cheap either and dilapidated, somewhere pleasant and airy and funded well, you know. And' you know, somewhere we can talk and just not that, just give them a place but keep sort of finding out what they, find out what they want. Once we've got a place to talk okay, what are we talking about, you know, what, you know, what, you know, you know, you know, what is coming out of the conversation that would help to heal'?
And but, you know, but I have found, I mean because in the small time that I've been in the mental health system I mean they're, when I first came in fifteen years ago they're talking about, you know, misdiagnosis, high numbers of this in the mental health system, you know, schizophrenia being , you know, being predominant, high medication, lots, lots of us in secure or lock up wards and that was fifteen years ago and I thought and I heard people saying oh this can't go on, this can't happen, black and white, black and white. And yet fifteen years later I'm hearing the same thing, I'm hearing, and it's even getting worse, the numbers are going up.
And then after some investigation and research I find out that way back in the 50s and 60s this was happening. So what is happening? Either they're not taking it seriously or, you know, or they're just ignoring completely, they go out and consult and then just completely ignore the information or the findings that they get. So , you know, I'm keen to do more research and find out exactly, you know, where is all this information's going then that they're collecting and why is something not being done about it. Or if something is being done about it what is being done because it's not working. So that
Niabingi describes what her voices say and compares hearing voices with "a song that keeps on...
Niabingi describes what her voices say and compares hearing voices with "a song that keeps on...
What kind of things do they say?
Yes well like I said' well they say things like the Queen is involved in a conspiracy to kill black people' they talk about good and evil' they talk about my family yeah they, they advise me on how to live you know, what foods to eat' well they would tell me to go places when I was sort of just running round, three years after the first, after, after the very first time that I left hospital I left without permission and I was sort of free for three years and they would tell me where to go and you know, and you know, and I'd go on a journey and they'd tell me when to come back and then you know, when to eat and things like that, you know'
First the voices start off all pleasant and friendly and you know, all, everything is all hunky dory and then [Laughs], and then they start getting nastier and nastier and nastier and then usually you know, they, they start off all friendly and I start saying you know, and then they get, well they tell, start telling me what to do.