Kiri Kankhwende talks to the editors of a groundbreaking new anthology about BAME mental health @madomasi
“Shame is so powerful. You need a whole community to tackle it.”
When I sit down to talk with the editors of the newly published anthology The Colour of Madness: Exploring BAME Mental Health in the UK it is soon apparent that Dr Samara Linton and Rianna Walcott are high-achievers. The two school friends managed to pull together this urgent, elegant body of work in just a year despite their busy schedules – Samara was finishing her medical degree, while Rianna was working on a PhD.
Rianna had struggled with mental health difficulties towards the end of her Masters degree, almost losing her PhD place. Part of the struggle was with trying to get the help she needed whilst studying in a predominantly white academic institution, with healthcare professionals unable to see past the “strong black woman” trope:
“Because I was high achieving, they weren’t taking me seriously, when I was actually in a very difficult situation. There is a difficulty of access with most universities, where they have overcrowded mental health services, and that’s been widely documented, but I felt that there was the extra step of trying to get them to believe me. You have to be performative about your mental health; you have to be just well enough to articulate that you need help but also sick enough to get help. So I would do this thing where, when I’m speaking to a white woman, I would deliberately make sure that I cried because the one time I didn’t cry she said, ‘go home, take a bath, you don’t need this’ and kicked me off the service,” she said.
The book is a startling read, mainly because it’s still rare to hear these voices, in their own words and on their own terms. This is something radical psychologist, therapist and blogger Guilaine Kinouani notes in her foreword to the collection: “Have no doubt that the traumas exposed here are collective and that they are intergenerational. Few of us are exempt from being touched.”
Putting these voices centre stage in 2018 should not be groundbreaking, but it is – a point that Rianna and Samara, now a junior doctor working on a psychiatric ward, return to often, with a mixture of surprise and frustration.
That’s how I felt when I read the book. I was startled because I realised that I hadn’t really read anything like it before.
Samara: Even when we were crowdfunding for the book, every time we were writing something and someone would tell us to make sure that we mention that it’s the first time anything like this has been done and I would think that can’t be true!
R: And we are committed to this UK perspective, that’s really important because when we talk about being a person of colour the narrative is very American-centric and we had a lot of American interest in the book.
S: When you called me, I was reluctant at first. Not because I didn’t think it was important, but because I was in my final year of med school. My mental health was really not great and I don’t think publishing a book has helped (!)
Why do you think it was so hard to get UK submissions, at least at first?
S: We knew we had to be deliberate to provide access to groups who are hard to reach. Marginalised people with mental health problems aren’t necessarily going to see the same adverts on websites.
R: We did find that overwhelmingly our contributions came from black women because we’re the first to do stuff.
R: In the same way had people who couldn’t get access to scanners for example, so to get their art to us, they had to post it to us to scan by ourselves. And we had people conducting interviews with others who can’t necessarily get their story out by themselves.
S: It’s something that we are proud of doing. We are both high achieving and able to articulate our experiences in a way that a lot of people can’t, but within the BAME community there are people with language barriers or who have intellectual difficulties.
R: It affected how we edited things as well. There are occasions where we would edit a piece and the author would tell us to take it back. We edited with a light hand to reflect how people speak.
An example is Raza’s [Raza Griffith’s] piece, a piece of art which is hand drawn, like a map [title: The Upward Spiral]. We had a lot of trouble with that because when we first got it he had taken a picture of it with his phone and it wasn’t coloured in. We couldn’t put it in the book in that form so we asked him to scan it, but he was having difficulties with that. We asked if he could post it to us and we even offered to get an artist to recreate it for him…it was a lot of back and forth about how to print it while staying true to his vision because we don’t want to mediate his words too much. The whole point is to make mental health more accessible in communities that don’t talk about it. If we then edit it to make it more palatable, more academic, more white, then we’ve failed.
So how would you describe this book? It struck me as a record, but also a resource, a piece of resistance and activism.
R: All of those things! I like that you started with record because the dedication is about us speaking for the first time. We hope that it will allow people to speak in future. We have 58 contributors from different backgrounds…different age ranges, sexualities and gender expressions.
S: I’d like to think that it’s unfiltered. There are things in there that you don’t necessarily agree with, that I didn’t feel I agreed with, but we weren’t prescriptive. That’s important because BAME experiences are often pigeonholed.
R: This is allowing for difference but it isn’t supposed to be put up in opposition to white experiences of mental health.
S: It’s an acknowledgment of difference but it’s not meant to be antagonistic or to say that white people can’t relate to these experiences, that’s not the point.
R: There were also a lot of stories that didn’t have happy endings or were positive. One that comes to mind is The Visitor by Rahul Mehta, in which a guy in a garden asks for help and a doctor and priest come in and won’t feed him. It’s in the violet chapter. It’s not a pleasant read or something you can easily relate to. You’re not meant to. But you’re also not meant to say, ‘Oh, that’s so barbaric,’ which is what you would do if it was written by a white author. This is someone from that culture saying, ‘This is how it is.’ It’s more of a mirror than a window for the gaze of an outsider who is being voyeuristic.
In your introduction you said: “Daring to exist and be vocal in a system not designed with your survival in mind is an act of political resistance in itself.” Can you unpack that a bit?
S: Historically, the mental health system is not designed with us in mind.
S: [It’s] designed in a utilitarian way, for the masses. It serves a purpose but it means that those who are already marginalised or disadvantaged are disproportionally harmed by it. When it comes to BAME people, the statistics show that we have worse outcomes than anyone else despite being overrepresented in the mental health system.
R: You have to ask, if we are overrepresented in the system, who is it for?
S: Even if you look at diagnostic criteria, they are so culture specific. And I didn’t want to go into the issues of labels on this because even with BAME communities it’s contentious. I look at some of these things and think, if two different doctors can look at this criteria, one from a South Asian background and one from a white British background and they come to two different conclusions about what is normal and what is pathology and what isn’t – that’s what I mean by the system not being designed with us in mind. Variance is normal. Difference is normal. Normal can’t be based purely on an American or British population, which it often is. These diagnostic criteria come from the Western world; they weren’t made by any African or South American countries, for example. The people making decisions in the room don’t look like us.
In light of this, there appears to be a breakdown in responsiveness in the mental health system.
R: Whilst we are overrepresented in the system, there is an othering going on which makes me think about orientalism or colonial thought because they are looking at an understanding of black and brown people that doesn’t exist and never existed, but which comes from an ethnographic anthropological lens. They are looking at us from the armchair role of a white person looking in on other cultures.
S: It’s something I see on the psychiatric ward at the moment. Being in East London, all the doctors are BAME on my ward. When I’m sitting with a doctor who is south Asian for example, I’ve noticed how if a south Asian patient describes certain family interactions, the doctor can respond immediately to them and put them at ease. There is an understanding and shared experience that the doctor can use that I cannot because they are also south Asian.
It shows how important it is for your clinicians to look like people they are trying to help. It seems so obvious. That’s basic, you need to be able to relate to your patients and they need to be able to relate to you. When your patients are overwhelmingly black and brown and your doctors are not, you’re always going to have this disconnect. When it comes to mental health, so much of it is about social interaction and personal things like spirituality, family relationships, identity.
There is class as well. Most doctors are middle class and a lot of our patients aren’t. They may also be struggling economically. There is a clear disconnect between clinicians and patients but they are the gatekeepers who determine whether or not you get therapy or medication. It’s no wonder that we’re being continuously failed as a group. It has been interesting and a confirmation of these things that you know as a black woman who has tried to access healthcare – to see the difference it makes when you see patients interact with someone who understands their experiences as opposed to having just read about them.
Do you think your experiences in the system have given you a greater insight as you pulled this collection together?
S: I probably have a bit more empathy for professionals who feel stuck. Sometimes you can feel complicit in a system which you’re not always sure is helping people, and sometimes you can see the benefits and that’s what keeps you going. Being on the other side, having gone through the mental health system or knowing someone who has, also changes how you approach others who are struggling. Sometimes you hear doctors joking about mental health patients in a way that lets you know that they haven’t experienced anything like that.
R: When you’re a patient, you know your doctors are people and for them to pretend otherwise is dishonest and alienating. My current counsellor is a Caribbean woman and every now and then she will code switch with me and lean in and say something that lets me know she really understands. It’s been so important for me because there are so many cultural things that I wouldn’t feel comfortable disclosing to a white professional because they’re judging me. When I had a racist counsellor previously, I had specified that I wanted a black counsellor and she said that it shouldn’t matter because we’ve got a good rapport and we’re both women.
It felt very obvious to me that if I had been a woman asking to speak to another woman it wouldn’t have mattered because to her, race was not a thing, but gender clearly was. But when I’m in a position of vulnerability in an institution and my health is in her hands, what can I do?
Who needs to read this and what would you like them to do with it?
R: I would like for this book to have a tangible effect. There is the effect that comes with being a person and being seen, having your experiences seen and reflected in it and realising that you’re not alone. That’s important for people finding their voices. But more than that, I would like for it to have an effect on the practitioners that we’re talking about because we would like everything we have said to be obvious for everyone. People don’t always realise that the narrative changes when you’re BAME, that it becomes different when your gender or sexuality is part of your mental health and wrapped up in that. When it comes to funding bodies and people putting money into mental health systems, the people who decide how many counsellors we hire at university for example, I hope they look at their staff, the intake of students or patients at their hospital and that they would make sure that this diversity reflects in the care they are giving.
S: Theresa May. The Health Secretary. Someone with actual power. We’ve always said that we want this book to be in the hands of those who have influence. Hopefully that influence will be distributed to the masses one day but at the moment it’s tied up with a few key people and we want this book in their hands.
R: That’s why the proceeds have to go towards those who are already doing the ting, BAME services that are user-led, so that we can make a tangible difference.
S: It’s very important to us that this is not an academic work and intellectualised venture. I want to see this book in the hands of people who are on in-patient wards, in libraries, available to people who may not be able to access support groups outside, who feel like they are the only one. There is one piece in the book about an Asian man in Yorkshire on a white ward. The book is for people like him who do not have patients like them in their immediate vicinity. I want people who feel isolated and alienated to have access to this book. I can think of patients that I’ve seen in the last few weeks that I would want to show a story that they may relate to; they may think that I don’t get it and I probably don’t, but this person in this book does. People like that may not be able to order it off Amazon. I would want to get it on in-patient libraries.
How do you want our communities to respond?
S: Our communities need to realise that these are our conversations. Sometimes the mental health conversations they see are very white and don’t seem like our conversations to have. You don’t have to have them out there if you don’t want to. You can have them within your safe space, in your community, where your language won’t be misinterpreted. We need people to realise that this isn’t just about them labelling us, though there is an aspect of that that you can’t ignore. We go through a lot as people of colour living in the UK and it has an effect on our mental health. That needs to be acknowledged and talked about and hopefully the shame will dwindle away. Shame is so powerful. You need a whole community to tackle it.
This interview has been edited for length and clarity.
The Colour of Madness: Exploring BAME Mental Health in the UK is available for purchase in bookstores now. The launch event will take place on 5 October in London. Dr Samara Linton is on Twitter: @Samara_Linton and Rianna Walcott is on Twitter @rianna_walcott
Kiri Kankhwende is a Malawian journalist and blogger specialising in immigration and politics. She has a background in French and Chinese language studies and holds an MSc in International Political Communications, Politics and Human Rights Advocacy. An accomplished public speaker, she has also written for the Guardian and the Independent, and has been a contributor to BBC TV and radio, Al-Jazeera and Fox News. Find her on Twitter @madomasi
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