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Niabingi was concerned about losing her place in a hostel and appealed to a Mental Health Review Tribunal (played by an actor).
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But anyway so I went into hospital and… was there, I think about six, at least, at least six months, hated hospital for you know, you know, hated hospital, couldn't escape and started the process of a tribunal because I wanted, well I got into, I think I was there for about six, eight months or something but after about four months I said, “Oh I really want to leave this place,” and I was afraid that my, my bed at the hostel would go and I didn't want you know, to be homeless again. And well not homeless again but you know, you know, so I was sure that I'd find you know, somewhere to live but I just, you know, that was nice and clean and everything and you know, the people there, living there were good, it was you know, somewhere nice. anyway started a tribunal to get out of hospital and then, and won that, or semi won that, they had an agreement, the doctors agreed that I agreed with the doctors that I wouldn't leave immediately but they had, they said they were going to let me go in a few weeks' time anyway so if I agreed to sort of just waiting till that time I would definitely be released. So I agreed and they stuck to their word so I got released and went back to the hostel. |
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She's ambivalent about taking an antipsychotic; although she realises she needs it she feels she isn't well if she's taking medication. (Played by an actor).
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Over the years I've come to realise that it is very, I mean at first, I mean yeah I've always been trying to sort of get back to normal, like I said you know, people always you know, telling me you know, I, first of all they're telling me ill because I hear the voices, then they give me medication you know, to help me get better and to, you know, but I, and then I think to myself well but if I'm really and truly better I won't be taking this medication. So you know, I've been sort of struggling with it for years to try and come off it, but it hasn't, it hasn't, so far it hasn't worked and I'm looking at homeopathic remedies now but [Rubbing hands together] yeah so but I mean I've always, I was always sort of like trying to say well if I really do get better and I am back to normal then I won't be on the medication but that sort of hasn't worked yet…
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. |
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Niabingi realised that racism had played a part in her developing schizophrenia when she stayed at a BME hostel. (Played by an actor).
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When I got into the BME hostel and they sort of like, you know, you know, they diagnosed, as well as anything else they diagnosed racism as part of my, had affected my mental health…
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 not for you and all this kind of thing. It's, it's not, it's not pleasant, it's not pleasant at all. |
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Niabingi compares professionals with a plaster - they help people to heal. She says listening and empathy makes people feel comfortable to talk. (Played by an actor).
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Mm. [Exhales] Oh, well oh dear… oh if I had to give a message I would say… something like one in four, the statistics are that one in four people will suffer mental distress or mental ill health at some point in their life. Some will recover, that is a known statistic, I think MIND brought it out a couple of years ago, that is a known statistic. So… some will recover and some, for some it will be a one off experience, and for others it will be a, something they're battling with like a life long, a life long experience that they're battling with for the rest of their lives. If I had a message… I would say try and have some empathy, not sympathy, not pity, but some kind of empathy, try and put yourself in their shoes and most people will say, “I'm a little crazy anyway, you know, I mean I'm”, you know, most people know that, you know, nobody is completely straight, you know. So it could quite easily happen to you. I would say… try and identify in some way with your client, with your, you know, with your service user try and identify.
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. |
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Niabingi describes being in hospital and how it prompts her to ask "what is wrong?" and often leads to the "stark realisation" that she is unwell. (Played by an actor).
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Yeah well it's very boring, you sort of you know, you sort of sit around. While, and just sort of occupy yourself, reading, telly, I mean not reading because your concentration has gone but I just, in those days I smoked cigarettes so you just sit around smoking cigarettes, talking to people if you can talk. But I'd be mainly listening to my voices, just wandering around listening to the voices. And then at night, you get fed, three meals a day, and you watch television and take your medication. That's basically all it was. As time has gone on it's got a bit better. Recently not the last time I was in hospital but the time before then they started taking me out on trips you know, which are very beneficial. I did like the trips and the fresh air and everything and the little journey in town, that was very good. So you know, that was quite, quite healing, quite healing. but generally you sort of, and oh yeah and I went to a few art groups as well… but never really took to the art groups, couldn't see how you know, how, unless you know, I know some psychologists read art but you know, it didn't really help me much, the painting and things like that it didn't, and drawing it didn't really help me much.
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 conclusion that I think I do need it. But yes so I think, about hospital it gives you time to think. |
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Niabingi says all is not lost after being diagnosed, try to come to terms with your diagnosis and then try different things to aid your healing. (Played by an actor).
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My message would be… [Exhales] don't, yeah don't, all is not lost, there is life after, I've said this before and even saying it on the reports, there is life after being diagnosed mentally ill or with mental distress or, you know, mental ill health, there is after, life after the mental health system. , you know, I would say sort of… I think, you know, there is something wrong, you know, I mean if, you know, you're behaving weirdly and stuff like that or if you've done something weird there is something wrong so you have to come to terms with that I think. And I think that was my biggest thing as well just coming to terms with there is something wrong. Or something has gone wrong at some point maybe not permanently wrong but that something has gone wrong at some point. I think try and come to terms with that and then don't, and then, and then be adventurous about what will heal you or get you better or get you back to some kind of normal state and you will be a changed person, I think you will be a changed person because after an experience like that I don't think you ever are the same, not necessarily mad forever but you will be a changed person. , you know, but a, be adventurous, try , you know, try different things that, you know, that can aid, aid healing and… yeah and I'd say listen to, listen to your inner self about, you know, what, what is good for you, you know, whether it's counselling or, you know, or, or, or therapy or a group session or, you know, or whatever just try and listen to yourself about what would be good for you. |
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Niabingi was injected because she stopped taking her medication and says she felt undignified, upset and like "a passive animal." (Played by an actor).
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Well, I've been on, yeah I've been on Depixol, I've been on risperidone, I've been on Sulpiride, I've been on oh what's the other one, Depixol, Sulpiride, risperidone, clorpromazine I think, I think chlorpromazine, I've been on quite a few. injections and I mean 'cause I was always non-compliant because you know, I was convinced I could get by without the medication they called me non-compliant because I used to stop taking it. So at first they insisted that I had the injection, I had to come in for the injection but then I'd promised them that I would take it you know, because the injection, I find injections so undignified you've got to go in and take down your pants or you know, and everybody seeing your privates and you know, not everybody but even just the one nurse is too much for me you know, and all that kind of thing. And sit there like a, a, a, a, a passive, a passive animal and just you know, have somebody, somebody inject you like an orange and I just, I really felt very upset with the injections, very undignified and belittled that I felt with the injections so I promised them I'd take the medication, you know, the oral medication. [Rubbing hands together] So that, that's , that, you know, they, you know they, eventually they agreed that you know, that you know, to give it to me. And you know, I've been on that for a while now, for a good few years, a good few years.
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]. |
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Niabingi says there should be more funding for Black health organisations, more consultation and more research. (Played by an actor).
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Okay what kind of things am I talking about, okay that's good and so I'm now quite, well I think, I think that, will for a start a very, a very sort of like basic thing that wouldn't be, you know, sort of like separatist for a start would be to fund black health organisations because even the BME hostel where I'm, I'm going, I'm doing now is struggling with funding, they've had their funding cut, they're having threats to, you know, you know, that they're not getting any funding any more so they're going to be, they have to close down. Do you know what I mean? I know of lots, you know, lots of black organisations that are sprung up, done a bit of good and because of their funding, you know, which is only sort term or not very much they've had to close down again. You know, so something like that, just generally the local authorities and the government support the black organisations that are coming up because they are coming up without all the need and they are doing the job but, you know, on the bare essentials or for a short time and then no funding and they get, you know, they, they have to close down. So for a start that would help the healing. And actually listening to what… you know, because, you know, the black community has been consulted and consulted and consulted we, you know, they say we're hard to reach but whenever they have a consultation there's always somebody who will talk, you know, and not, not just someone, some people, you know, there's always, you know, people will talk and say quite sensible things as well. I mean so it's, you know, and it's not hard to get some consultation from, you know, the BME community, they're not that hard to reach…
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's, I mean an area of interest for me at the moment but, you know, with, so with the healing you have been consulted so listen to what you're being consulted on… you know. |
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Niabingi describes what her voices say and compares hearing voices with "a song that keeps on coming into your head". (Played by an actor).
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I, you know, I thought was just you know, me sort of you know, thinking, thinking but eventually now I, these thoughts became sort of, well they felt, the felt like, they became uncontrollable and they became and they felt, and still feel like they're separate to whatever I am thinking because I don't know what happens but they sort of, well you know, I might be thinking of a cup of tea and they'll be thinking, you know, saying something completely different. And it sounds, it sounds, it's the most similar thing I can get it sounds like they're completely separate, that they're coming in from outside you know, and you know, and that's why I call them the voices because they feel like they're coming in from outside. But the closest thing that I… I've tried to explain to people what they're like, is like when you get that, that song in your head, you know, this, you know, a song that keeps on coming into your head, no matter what you do there's, you find yourself singing it or thinking about it you know, the words and that's what the voices are like a bit, uncontrollable, they're always there, you know. And you try and think about something else and yet they're always there with this, not repeated words because they, they do say lots of different things but yeah sort of always there and almost as if you know, and for me I believe you know, with a life of their own. But the closest I can say is that people get that, that song in their head or a phrase or whatever and they can't get it out of their head for a while, a few hours or whatever or morning or something and that's the closest that I can sort of like explain to people it's like to hear voices, for me anyway, yes.
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. |
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Niabingi thought hearing voices was "natural", but when her mum first took her to the doctors, they said nothing was wrong. (Played by an actor).
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First of all I thought it was thoughts, then it became stronger and stronger and I thought oh, and then I thought oh I'm experiencing sort of like some kind of telepathy or you know, or, and voices and it felt like it was voices. And that's, when, when, it got to that stage I thought oh this is a bit strange but then, oh as well as thinking it was a bit strange I also had a thought that oh everybody has this, but I'm the last one to find out you know, you know, they haven't been telling me about, this is all about growing up. 'Cause I was young then, I was early twenties you know, and I thought oh this is you know, you know, I found out on my own and everybody has been experiencing this but nobody told me. So yeah I thought you know, I thought it was natural, I thought everybody, you know, it was just a part of growing up.
How did you feel about it when it was happening?
Oh I wasn't, I wasn't frightened, I felt in a way I felt quite excited you know, oh great you know, I'm in at last because you know, you know, everybody you know, thinking that everybody, but wondering why people hadn't explained to me that this was going on. But I, I wasn't frightened, I wasn't frightened, it was just, it was just, I just thought it was natural. In some ways you know, some of the things they were talking to me about nature and stuff like that and about death and life and death and I thought oh you know, it's quite beautiful, quite beautiful things I'm hearing, yeah.
And so at what point, you said your mum came along and noticed something wasn't quite right.
Mm yeah well I got, well I got, at the end of the year when I went back home she noticed that I wasn't eating properly. She said she noticed that I wasn't eating properly and that I used to sit and stare at lot. So she then got the doctors involved then. You know, she took me to see somebody, asked me to go and see a doctor for myself which I did do. but at first they said nothing was wrong you know, nothing was wrong but she persisted and eventually got Social Services involved and they eventually insisted that I went into hospital. |
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Niabingi believes that the psychological effects of slavery, colonialism and racism have passed down the generations via genetic memory. (Played by an actor).
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You know, Dr Leary, Dr Joy Leary an African American Psychol-, Psychiatrist talks about Post , Post Slavery, Post Slavery Syndrome. Since, you know, since slavery we haven't had any psychotherapy, we've had no counselling, we've just been told you're free now, get on with it. You know, and there is a lot of behaviour and not just that but, you know, and then after slavery there was racism and colonialism… you know, and for all those experiences no one has collectively thought what has happened, you know, to, you know, the black race, you know, what, you know, what is, you know… what is ailing them because, you know, there is terrible things going on, you know, 14 year old's stabbing each other and things like that, do you know what I mean? And that's not because, do you know what I mean, they're living fulfilling, you know, that's because something is going on in their head, something psychology. You know, and I believe in what they call genetic memory where your memory is passed down from generation to generation… and I think that needs to be looked at, you know, seriously. You know, and all that, all things, all that needs to go towards the healing. |
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She says different professionals had different responses to her using herbal remedies and that the white professionals were very sceptical.
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No, but the black professionals have talked about my diet. Yeah. They haven't really, I mean they haven't really offered any alternative, although some of them I, I, yeah they've talked about my diet, they have talked about my diet and said, you know, things that can help apart from… you know, the medication. And not just that but they've been open to, so, when I talk about herbal remedies they've been more open to me sort of like trying it out and, and, and, you know, and, and, and the benefits of herbs, you know. Whereas the white, the white professionals have been very sceptical about herbs and the benefits that they could possibly have and, “Oh just take your medication [Niabingi], you know, you'll be alright, you don't want this and you don't want that.” They haven't been adventurous, you know, with, with how I see my healing, you know, to, in what form my healing could take. |
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She says her mental health has been a spiritual experience and that there should be more focus on spirituality in mental health.
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And also the spirituality in mental health, that hasn't been assessed. because I'm, I mean maybe I'm going to sound completely mad now but I could swear that, you know I… you know, that, you know, some things that have happened to me, you know, I've either dreamed before or something like that. Do you know what I mean? I think I mean, you know, or, you know, and if you try and, try and tell the doctor that something spiritual as well as, I mean I always say as well as any insanity that I, as quite, I quite positively believe that I have experienced insanity in the true meaning of the word insanity. But in so saying, in the same breath I'll also say that I truly believe what I experience has been a spiritual experience as well. I know I've experienced insanity, you can, I will admit to that but as much as that I also think I've had a spiritual experience as well. So, you know, I'd like that to be more, more looked into, more investigated, more investigation into that. |
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Niabingi read books to find out more about her diagnosis and discovered Black psychiatry; she says she now seeks a Black opinion because she can identify with it.
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Well yes, well not I've just, I just… when I, after the first time I was in hospital when I began to calm down again I grabbed a book and I thought okay look, I've been in hospital they're saying this is, you know, I've got this thing called schizophrenia because then, by then I had the diagnosis and I thought to myself well, you know, what is this, what is this mental illness thing, you know, what is this, you know. So I grabbed just any psychiatry book and I began reading and then I went onto, and then I began reading, you know, sort of black and white psychiatry and that's when I sort of realised that, you know, and the, and realising it's sort of like well this is what, and, and so the, you know, when I began to read the black psychiatry and listen to black psychiatry I thought well yeah that's what happened to me yeah I was thinking this or yeah I was thinking that and that's when it began to dawn on me that racism did have a part on, you know, on my experience, my experience of growing up here and didn't, and, you know, and, and in the mental health system I realised, you know, that it is, had a part as well… Yeah, I didn't, at first I didn't specifically seek them but these days I do. If I have an issue I will seek a black opinion because that's usually the opinion that identifies most with my, what I'm experiencing. |
