Conversation with Dzifa Afonu – part one

This conversation was recorded in late 2019.

Click ‘Continue Reading’ for the transcript.

Transcript:

Lani: Welcome to Sideways Times, a UK-based podcast in which we talk about the politics of disability and disability justice. Through this podcast I hope to have many conversations which broaden, deepen and challenge our understanding of how to work against ableism, and how this work connects to other struggles. I’m Lani Parker, and in this edition, as part of our ongoing conversations about the politics of support and care, I talk to Dzifa Afonu about their experience of using and employing PAs, and how and why managing these relationships has changed over time.

So hi, I’m really excited to be having this [music fades out] this podcast, kind of finally, it’s taken us a while to be able to get together and do this podcast with Dzifa Afonu, a good, good friend of mine, we’re gonna talk about care and support and PAs. Did you wanna introduce yourself, Dzif?

Dzifa: Sure, hi Lani. Yeah, as you say, it’s been a conversation that we’ve had bits and pieces of over time, and it’s really nice to have a bit of space to kind of really talk about this issue, this topic, because I think there’s like lots to it. I am a disabled person and I am – at the moment it’s, in our current climate I’m already fortunate enough to have personal assistants to come into my house to help me. I also have a personal assistant at work, who helps me with kind of admin stuff and support around dyslexia. The people at home help me cause I’ve got an energy limiting condition, and they help me kind of [inaudible] my energy by just doing all the things that I would normally do but just need a little bit of help with. Yeah, that’s all. I’m a parent, so my daughter might come in in the middle of this at any time, she’s two, which is great. I work in mental health services, so that’s a fairly intense job that takes up most of my energy, and I’m a very sociable person, so my house is always full of people, and I always live with people, so it’s always quite a communal space. I suppose that’s my introduction.

Lani: I guess like your situation is different from mine, cause I have – I do have PAs, and they do help me sometimes with stuff in the house, but I don’t get a care package from social services or anything, but I do have PAs at work, so it’s slightly different things. And some of those bits of conversations that we’ve had were about like some of the similarities and differences of those relationships, so maybe we’ll explore that a bit as well, in the course of the conversation. So you were saying that you’re really sociable, and like there’s always a lot of people around. I guess that that hasn’t always been the case, when you first started using PAs and having support. How was that, sort of the first kind of what was your journey at the beginning?

Dzifa: Yeah, I mean, I think I lived in – so I think a lot of it was to do with where I lived, so that had a big impact. So when I first became really seriously unwell, I was living in a very small, one-bedroom flat. It was a housing association flat, so that’s a flat that is partly subsidised by kind of government grants, and a company that’s aimed at kind of guarding social housing at rents that are affordable. So I was living in that house, and I was becoming more and more unwell, which meant I was spending a lot of time in bed, at the time I was training, and I was trying to kind of balance working and recovering from, or dealing with a health condition. Actually right at the beginning, I hadn’t started training, I was doing – I was just at the end of doing a masters course. I kind of – I couldn’t complete that masters course cause I was so unwell, and as I got more unwell I spent less time with friends, and because of where I lived, it wasn’t – it was kind of inaccessible to everybody, actually. It wasn’t just inaccessible to disabled people, cause it was – it was at the end of like the very south of London, at the end of the tube system, and it was like you got off the tube and then there was like a 20 minute walk through, like basically different little bits of alleyways really, to get there. It was down what we call a cul-de-sac, which means just like a dead end street that doesn’t go anywhere. And it was up two flights of stairs… and yeah, I basically, for a lot of that time I just lived in my bed, and I didn’t have any support. And then it was in that house that I had my first assessment for carers, or personal assistants. Probably a hard place to be for a personal assistant, cause even for me, like my bedroom was so small that there was kind of hardly any space on my floor, it was just – it would be – it was impossible for people to actually help me out of bed. My bed was so low on the ground, and so difficult to get through, there was – even if it had been the ground floor, it was so small that I wouldn’t have fit a wheelchair, a normal-sized wheelchair wouldn’t have fit in it. So, yeah, it was quite a different situation, I think partly because of the housing, and also cause at the time the care package they gave me was, I can’t remember, it wasn’t very much. Something like 12 hours a week or something?

Lani: You can’t do that much with 12 hours really.

Dzifa: Yeah, it’s not even two hours a day. So that was… yeah. It was really tricky in multiple ways. I couldn’t really get out, people couldn’t really come to see me, and just a lot of time in bed, and a lot of time being so fatigued that I couldn’t really do anything. Getting the care and support was quite hard, when you’re like so unwell that you can’t even fill in all the forms, and do all the kind of assessment process where people come into your house and ask you lots of questions to kind of quantify how long it takes you to go to the toilet and things like that… But yeah, I suppose before I got ill, I was a really sociable person, but I was very mobile. I think we talked about it, but you did friendships like this and I was a bit more like this as well, and kind of we’d go to people’s houses, every day I’d have a friend I was visiting. I’d travel over an hour or so to friends in London, so I’ve always been sociable, and then suddenly to become ill, and not be able to see anybody, that was emotionally really hard as well.

Lani: So at the beginning like you only had two hours a day, or even one hour a day, or like a small amount of time, but what were your sort of expectations at that time? Because you did have a feeling of what a PA was. Hadn’t you been a PA before?

Dzifa: Yeah. So I… I wasn’t like this fortunate, or privileged, or it seems like a strange thing to say, because it’s a – it’s not really a privilege to – this start of what we get, as disabled people, in this kind of quite ableist world, isn’t really a privilege, it’s like some basic needs which often don’t get met. So you start to think of them as like gifts or privileges, but actually everyone should be really in this position, but I think I was lucky to have been quite an informed person about disability, before I became a disabled person, a physically disabled person. I’d worked for a disability charity. My best friend was a wheelchair user whose mum was a big part of the disability, kind of the history of disability politics, and fighting to kind of get policies, nationally – national policies to support disabled people, so I was quite fortunate to have those people in my life, that could… it helped me understand that disability is more than just about impairment, but it was about kind of the social model of disability, it was about how systems and people and attitudes and physical things can act as barriers to disabled people. So because of that, I had a great appreciation for the politics and the thinking that went into the language around having personal assistants, and I also became a personal assistant, I went on some training, I think, about [inaudible] I don’t know if I actually went on the training or maybe helped deliver some of it. And… and I was a personal assistant for, particularly for young people with learning disabilities, when I was a lot younger, and yeah, so I can remember that that was – I can remember the feeling of like that these young people deserve to have the right to have – and that these personal assistants were there to help them have those full lives, to make sure that they could do things that they wanted to in their lives – that the personal assistants were not just there to kind of look after people, but were there to help people have the lives that they wanted, such as going out, being sociable, trying to tackle some of the barriers to disabled people’s inclusion in lots of ways, whether that’s in work, at home, or in social circumstances. So I guess I was lucky to have had that experience… How did you find out about personal assistants?

Lani: I’m not sure! I feel like it’s one of those things that I’d always known about. For me, I – which isn’t true, I don’t think, but for me I – what comes to mind is probably to do with going to college, so – and kind of getting I suppose politicised around disability issues more there, and the way that they were kind of seen as – well, we had carers there, and kind of thinking with people about actually what they wanted, and fighting for people’s rights within the college, and issues around not being able to do things, like not being able to go to bed at the time you want and stuff like that. I feel like that was sort of seminal time when I started to think about it more. I probably did know about it before, but…

Dzifa: Yeah. I was fortunate to have had disabled people in my life that kind of modelled what having a personal assistant was like, or – I mean modelled it, not as in like gave me the perfect recipe of how it worked, but as in I saw people around my friend who were there to support her, but I never felt like I was – they weren’t in the way of us, which is a real possibility with a – when you’re like 15 and 16, that you can have support workers who end up kind of like making you more isolated, cause you spend less time with your friends. But I think I learned quite early about that role of personal assistants to not do that. But yeah, I think it makes me – the thing I find complicated about defining the difference between what a PA is and what a carer is, that is I think it sometimes can denigrate the role of carers, and actually carers are really… a group of people who are often at the brunt of a lot of stuff that isn’t very… that can be oppressive as well, in terms of like poverty, and class, and race, and I think that – I think that it could feel like another… but disabled people being really strong, and being like ‘No, we want personal assistants, not carers!’, because that could be taken as maybe being negative towards carers, and I think it’s not – it’s not a personal thing. It’s not about particular individuals who might name themselves as carers, to people who would name themselves as personal assistants, more about the institutional care system that was designed by people who are not disabled, to supposedly support people who are disabled, which is focused on kind of the basics of care, such as feeding, toileting, cleaning, sometimes putting people to bed, and it’s not nec – and all of those things within, even within all of those things there’s not a lot of choice, but it’s not as much about social – being a social person, being a part of society, and looking after all the needs of a person, which are more than just being clean and fed. And that’s not because people are bad doing the jobs. A lot of the time people have no time between people, they’re visiting lots of people throughout the day, and they’re paid really badly, they’re treated badly by their managers, they have to witness kind of the horrendous… the horrendous situations that many of the people they’re visiting are in. Sometimes people who don’t have any money, who are cold, who are left all day in soiled clothes, cause they don’t have enough care. People who are lonely, or depressed, or angry, and they’ve got to kind of just get through several of – several people throughout the day, so it’s a really hard job to stay like connected into, and feel like good about.

Lani: I feel like it’s a set-up, really. Like it’s a set-up, an oppressive set-up.

Dzifa: Yeah, it’s setting up two people who are quite disempowered, against each other in a system that doesn’t support either of them. Like when you mix that, when you put that in a pot, it’s not – it’s a toxic combination, to put not enough resources, when you’ve got not enough resources for disabled people in this country, and then you put other people who also don’t have enough, and probably aren’t even earning that much, like are struggling to make ends meet because the wages they get as a carer is not necessarily enough to afford the kind of rent that we’re talking about, especially in London. So it’s a really – I think it’s a really tricky position for people to be in, so I feel like it’s really important to be clear that when you’re talking about the distinction between PAs and carers, it’s not about people, it’s about the institutional stuff. And also I think it can sometimes be a bit classed in that – in all ways actually, cause I was thinking actually it’s kind of classed in terms of carers and how much access they have to information about what the difference is between carers and PAs. But then I also think it’s actually also a bit classed in terms of disabled people, because part of I think the way that PAs learn about what a PA is, is through disabled people. And disabled people who have been – had access to things around the disability movement, or disability politics, disability theory, are not a large group of people. The majority of those group of people are gonna be certain types of backgrounds, such as university educated, etcetera, or maybe from a family in which they were like supported to have autonomy, and like in some way it’s quite a hard thing for people to know about, it’s not out there. I think recent – I think there was recently a show on, was in Channel 4 or the BBC? was the first time I’d ever seen personal assistant, the words personal assistants, actually in British, like on media, and a proper representation of what that role can be. But it didn’t go into the politics of it, it didn’t tell you about like ‘This has evolved out of a resistance to an industry of – that treated disabled people as not human sometimes, and was degrading, and this is disabled people trying to reclaim what care means for them. And be able to like name what they need rather than be told what they need.’ There’s like there’s never, like people don’t know that. And even now, I was thinking about it today, that actually, the PAs that I have now, I never had that conversation to say actually this is what the history is of why we call you personal assistants. Like they just get on with it. I think they know intrinsically, because they have – with me, and they learn it, but I don’t think they know about the history or the background. And sometimes it’s like, it’s a bit weird to teach people that way.

Lani: Yeah, perhaps you don’t always need to know the background if you know the practice.

Dzifa: Yeah. I think it does help though. I was thinking about – I think what it can help is, is to try and challenge some of what can feel like… it’s a mixture in a way, because I think people in service industries, for example cleaners, there’s a lot of stigma around like, you’re somebody who sweeps up after other people, that that makes you less of a person, like you’re less – you’re less than the person. You’re the person who cleans up after the people who are people, so it can feel like a degrading job, and I think being a personal assistant, if you – I think some people do feel a bit like ‘oh, I’m stuck in this job because I couldn’t make it in another job’, or ‘I wanna do something else, but this is like what I have to do for the moment’.

Lani: Yeah, is it like a valuing of care, and like that skill and that like… That actually is a bit – it is a difficult job to do well, like it is a really difficult job to do well, and you can learn a lot from it, but it is like that innate sort of – not innate, but that structural kind of degrading of the idea of care.

Dzifa: Yeah. There’s definitely a lot of like degrading of it, and just about, you know, society’s thoughts about – especially when, like I say, we’re talking about carers, and when you think about carers as kind of meeting people’s kind of personal needs, of eating and going to the toilet and keeping clean, and I think so those things are particularly – and that to me is kind of disability oppression in action really, like those things in particular, the idea that like somebody might need support for eating, like being fed, is something that’s seen as kind of like, you know, disgust – like that’s disgusting, or that’s something that’s not – like people thing ‘Oh god! Like if that were to happen to me I couldn’t live’, you know, like that’s kind of the way that people talk about those things. So I think to be associated with a person like that, as somebody who looks after that person, then people are seen again like ‘Gosh, that must be, you know really hard, and you must be cleaning up after people all the time’. But, you know, like poo and eating and things are just part of life. Like in my house I’m like constantly surrounded by poo, and – and I got vomited on this morning, and then I got poo on my fingers after changing my child’s nappy, but that’s like acceptable, you know, like it’s OK to like clean up after your cat or your dog, but to an adult human being that you might have to do personal care things, somehow that’s really denigrating. That’s just disability oppression. There’s actually nothing wrong – we all poo, like why do we sometimes want to like hide the fact that we all as adults have to do the – go to the toilet? And at some point in people’s lives, whether you’re long-term disabled or not, even if you just go into hospital. If you have a baby, for god’s sake, at that point you – somebody has to look after you in terms of those things. It’s just natural, it’s like normal and healthy to have to have a society which people help people with those things if they are not able to do those themselves, and that idea that we degrade it is just a way in which we like degrade disabled people, and make them not valuable, and then by association make anybody who does that for a disabled person. not valuable. Or, on the other hand, an angel. The saint that only God can send to do such awful work.

Lani: Yeah, must be so hard. But then also like those put you in a bind, right, because they’re sort of ‘Oh, it must be so hard’, and then a lot of like politicised disabled people will kind of rally against that, say ‘Well, it’s not hard, it’s not’ – this is not – I don’t know, this is not something – and so talking about some of those dynamics, where actually the structural stuff, like we were saying, it’s a set-up, right. So actually it is hard, like some of that being a carer, being a PA, being low-waged in that kind of role, can be really difficult.

Dzifa: Yeah

Lani: And to me that part of the politics, it kind of distances that a little bit [inaudible] really.

Dzifa: Yeah. And I think that’s what actually happens in relationships as well. Like I think one of the things that, you know, that kind of spurred this conversation is that… is me kind of going on a bit of a journey around how I saw PAs, how I thought of PAs, how I treated PAs, how I still treat PAs or how I – you know, I’ve been learning as a process of how to have PAs or what that means, and the politics of that. And I think, you know, even if your intentions, on both sides, are to be as respectful and thoughtful of each other, or you even have the knowledge of all the politics and the… and the power dynamics and whatever, at the same time it’s a real intrinsic, I don’t know, like a real deep vulnerability, to be like – for example for me, and it’s a bit less now, but particularly used to be, cause at my worst energy wise, and pain wise is usually in the morning, and usually a PA has to come in, let themselves into the house, let themselves into my room, and that’s like a really intimate moment when you’re asleep, and to have somebody there. I don’t know – I mean, I know – I don’t know many people in the morning, cause I don’t spend that many time with people in the morning, but most people I know in the morning are not their best selves, and letting somebody come in and help you get out of bed, or brush your teeth, or have breakfast and something like that, it’s a really intimate thing. And so those kind of like insecurities that we have about ourselves get in there, like on both sides, in those kind of intimate moments, like I feel like it’s moment by moment sometimes, the PA relationship, it’s like – that’s what’s hard. It’s not just – it’s not about it being hard because ‘Oh God, it must be so hard looking after those people who are so disabled!’, I think what’s really hard is like you’re in this really intimate space with somebody who needs your support, but is also trying – you know, is also in a system in which they are dealing with – their – their – you know, I think as a disabled person I’m always dealing with my own balance between wanting to be independent, and have dignity, and wanting to… and that sometimes kind of rolling into wanting to appear not so disabled, or wanting to be more valuable in the world. Like that’s something – it’s really hard between saying ‘Oh, I need help with this’ and feeling empowered in saying that. That’s a really hard place to be in, to say ‘can you do this for me?’ in an empowered way that doesn’t denigrate the other person, and doesn’t make you feel like you’re begging for something that’s a basic need and makes you feel really vulnerable. I think those kind of things are the things like on a daily basis that makes the job hard, because you’re kind of so emotionally entwined. As well as you see somebody almost every day, and if – I was talking about this to my PAs recently, I was like ‘imagine if you had somebody every day in your space’, like most people can’t – don’t want that. Like the only people most people have that with is their partners, like –

Lani: And their children.

Dzifa: And their children, but to have that with a group of people who you don’t know very well, and often changes, and sometimes with a complete stranger cause it’s their first shift, but they’re in your house every day – not the same person, but even if it’s not the same person it’s still something of like a presence of somebody other than – like watching you in your life all the time. If you’re in a bad mood, if you’re tired, if really all you wanna do is close the door, hide under the duvet and speak to nobody for a few days, like that’s not an option because you need support to just do the basics, like have food and go to the toilet, so having somebody in your life every day like that is – those are the things that, I don’t know, makes it hard. So it is a complicated job, I think, and I think that’s – that can be a bit of a set-up as well, like that sets everybody up, because the idea of it is it’s a no-skilled job, low-skilled job, that anyone can do. And that makes it hard for disabled people, because sometimes you get people coming who want to do that job, who haven’t thought about how hard it might be, or what they, whether they really have the skills. Sometimes it’s a job – the kind of job that people want to do when they haven’t had any work for like a few years, or they’ve had – they’ve just recently had a mental health breakdown and they’re trying to kind of recover slowly. That seems to be the kind of job that people think to do, and I think it’s – I’m not saying that nobody who’s recovering from a mental health crisis can ever do work as a carer or a personal assistant, like even I myself have been somebody who’s been in a crisis, and also been a personal assistant. I’m not sure I was the best at the time, I’m not sure it was the best choice for me, but –

Lani: But it’s not impossible, and it’s not a –

Dzifa: No, it’s not impossible. It’s not a thing to say like people can’t, but you have to have a kind of emotional resilience and flexibility to be there for somebody else, and put your own emotional needs second, for –

Lani: Yeah, and I think sometimes for me that’s… that’s a difficult balance, that’s quite hard, because like even at work, so I don’t have personal care, but even at work, I get really anxious a lot. Like I get really overwhelmed and really anxious a lot, and then I get angry. And like I have to explain – people know, that’s how it happens and I really try to work on it, and all of this kind of thing, and like if you work with me you’ll know I’m really smart, I can do my job and all of that kind of – but it’s kind of like, they see that all the time, and their job is to sort of be professional with that, so to step back and to step forward, but I don’t see them in that way, as well, like because it’s – I suppose cause it’s also a quite professional, more professional environment, so they expect it to be a bit more. But I don’t see that from their perspective as well. Which is not necessarily a bad thing in that role, but in terms of the relationship.

Dzifa: Yeah. I always have the opposite thing though! I always have the opposite in my PAs, which is really interesting, and I don’t know what it is. I think there’s different things that people bring out, but I always have that they are telling me about all of their emotional stuff and anxious they’re having, even at work, like recently, you know, this happened with me at work with somebody, and I’ve been working with for a long time, and I had – I did really have to take into account that she was dealing with a lot of anxiety, and really in an unstable housing situation, and he’d had quite a lot of time kind of like going from job to job, and you know, like he wasn’t in the best place, and I kind of had to give more time and more space and more understanding about when he got things a bit mixed up, or when he was a bit all over the place, and wasn’t following instructions, or didn’t feel able to talk to me about things. So I felt like I had to do a lot of like looking after, whereas I didn’t really have any space, but then also partly my work, the way that because, I think, I’m only just trying to carve that a bit out, cause I’m trying to be able to be more in myself, because I work in mental health, like a lot of the time we’re working with people in a lot of distress, so we have to take on – I think it’s a positionality thing. You kind of end up being positioned by things. So like, if I was in another situation where I felt like I was able to be like – like I felt like I could lean on the PA and worry with the PA, then I think that would probably make me a bit more that way as well. It’s just the – it kind of depends on where you are and the position in the relationship.

Lani: But I also think – I mean I also think for me,it does depend on the relationship, but there’s also this thing of… I don’t know, that people feel with me that they – so there could be many many things happening, and I could know that things are happening, because I could tell. But like how to talk about that – I’d have to bring that up and talk about that, as a sort of – not as a performance issue, cause I wouldn’t – I wouldn’t approach it in that way.

Dzifa: Yeah

Lani: But because of the profess – because you’re supposed to be professional, so I think it… it’s very different for us in terms of like the way that that happens?

Dzifa: Yeah, but maybe it’s similar like you say, cause I have to also give – I give them permission to do that. Like I say I can see that you’re struggling, or I know that I asked you to do this and that you, but let’s talk about it a bit more. And I get – there’s something about what you were saying about, you know, like it’s that kind of like – in a friendship… like in our friendship for example, if I was to be having a hard time, I could just call you up and be like ‘I’m really [inaudible] a hard time!’. And a few weeks later you’ll call me up and say ‘I’m really having a hard time’, like we know that it – I know that when I kind of open up and I’m vulnerable to you, that you also will open up and be vulnerable to me. It’s not like a tit for tat, but it’s just who we are because we have a kind of, a level of – are level on our friendship. Whereas with PAs I think it is hard for them, because they can’t – they aren’t in that position where they can equally express how they feel, and then I express, and then so in some ways you can feel… in debt – I don’t know, not indebted, that’s not like I’m in debt – it’s not indebted, it’s more like someone’s doing lots for you, and you’re not able to do the same for them, or… that they feel that they can’t – that you can tell them… This is what I found, I think actually at work, is that I can tell them what I was struggling with about their work, but they couldn’t tell me about what they were struggling with about me. And that’s a really hard – I think that is because of the dynamics, in a way that doesn’t – because of that kind of lack of level playing field, that it feels like they can’t tell me fully how they feel about me, cause I’m the employer. And that’s – that’s why I have to make invitations for people to be able to say, you know, tell me how things are going, tell me how you’re finding it, how you find the work, like am I – are my instructions clear enough? Do you need more time with it? Like those kind of things that I think, yeah, those are the set – the way it’s set up. And something about how you – how it can make you feel, kind of increase some of those feelings that we were talking about earlier, of kind of being the vulnerable one, cause you’re the one having to show your impairment, or be with them when you’re struggling. It can make it hard to feel – I don’t know if that makes any sense, like it can be hard to – to express your own needs, sometimes. Is that make – makes sense? Like –

Lani: Yeah. I suppose like with that – with the idea of personal assistance, because of the power dynamics, the idea originally – the politics of it was that, you know, if you have professional people to take care of you, open quotes close quotes, air quotes, whatever you say, that that wouldn’t be an issue so much. And I just wonder about like the conversations we’ve been having, like cause the dynamics are still there, and everybody is very different in relation to how they want their support. And I suppose like partly that’s – I won’t – that’s why I want to have lots of conversations about how people have their support, but with you, like there’s been a journey around that sort of professionalism, and not, hasn’t there, and I think for me, because most of my support is at work, I’ve been very much like I supervise you, this is what you do, I have a lot of work to do, we need – do you know what I mean? But…

Dzifa: Yeah. Yeah, I was trying to think about like what is the arc of the whole thing, because I suppose when I first started, I expected to have kind of a PA that was like how I was when I was a PA, and when that didn’t happen, or when it became real, when you really had someone in your house, what it felt like is those boundaries of professionalism were just like disintegrating before you, and suddenly you were like listening to somebody’s problems, and they were running late all the time, they weren’t doing what you were asking them to do, you were finding them like they weren’t even responding to what you were asking, you felt uncomfortable with them in your house, like I just found myself like ‘Oh gosh, it doesn’t’ – like it really is so far away from that, and I think… I think my first approach was like ‘OK, it’s the wrong people’. Just keep – I’ll hire somebody else. And then you hire somebody else, and the same thing kind of happens. Its like OK, I’ll hire somebody else, so you hire somebody else, and it’s kind of like – and I’ll hire somebody else. You know, you kind of keep going, thinking maybe it’s just, you know, this agency, or this place, or this whatever, and I think – I think – I’m not saying that there isn’t an element of like who comes – it does matter who comes to do the work. But it’s also… I think what I started to learn was about trying to set up a bit of boundaries, and trying to work out how is this relationship different from a friendship. What do I expect from this person, and how do I set it up in the beginning? I think after – once I moved out of my other old house, I suppose partly I thought I put down a lot of what was difficult in the PA relationship down to where I was living, because it was a really hard place for a PA to come into, because it was just a mess. It was so small, it was just an impossible space to make tidy and feel comfortable, and I couldn’t move, and so I was in one room and they were in another room. I was trying to give instructions, it just felt like so hard, so I thought moving would kind of resolve it, and then I also thought that making the job more appealing, or more fun-looking, would make – would also bring different kind of people, so I kind of went through a phase of kind of having these posters, being like ‘Come and be’ – almost like ‘Come along and be a friend of a disabled person’, it looked like, I think, to other people. And so I think that, again, was an approach that just didn’t really work, cause obviously you kind of – again, the boundaries become really blurry, people come with… different expectations of what the job’s gonna involve, and they expect – I think people expect you to kind of be – or did expect me to kind of be… make them feel really comfortable, be fun, be welcoming, be chatty, every day. But that’s really hard expectation on somebody that your – who has somebody in the house every day, to always be able to be chatty and fun, and… make people feel comfortable. And then also, I think the element of being an employer was something that took me a long time to be able to come to terms with, cause I never really wanted to be an employer. And I felt like a victim of the state really, because I felt like they didn’t give me enough hours, which left me in a position of like not having enough care, and like not being able to, like – it’s hard to – it’s hard, so if you’ve been given 12 hours, and it really takes at least like 28 or 30 hours a week to make sure that I can have some – just the basics, like food, bath, cleaning the house, and you’ve been given so little hours to actually do that. And you know, people are leaving you half dressed, or without any food for the day, or not able to go to the toilet, or your house in a mess so you can’t use it and cook anything for yourself. And – so that really sets people up against each other, and I felt really set up against people. I felt really like… I couldn’t do the right thing as an employer, in terms of paying them for all of their time. They were doing more time than they were being paid for. I felt the whole getting them paid thing was such a complicated system of timesheets, and making all the numbers add up, which I’m – I have dyslexia and that just doesn’t work really for me, to have that kind of, like the managerial side which means kind of paperwork, and if – you know, if one dot doesn’t – isn’t there, or one cross on the T is missing, then they don’t get paid, and that can put me in a really horrible situation, when I would get – I’m suddenly responsible for the people not getting enough money to live on, because I haven’t worked out how to do this form-filling stuff. Which felt like my fault, but actually you’re kind of left with it. You’re kind of like ‘Oh, you’ve become disabled, here’s a load of admin, that you obviously won’t need any training or support to do. Here you go, good luck, bye!’ Like it was – I mean it’s a set-up that I, you know, understandably it was – it didn’t really work. So yeah, I think those two things – so rather than what I suppose – despite coming to it knowing that personal assistance was a profession, and that there was an expectation of a professional ability of somebody to become – to come in and support you, and make sure that you have all the needs that you have met, and make sure that you have – you’re able to live the life that you need to – or you are the life that you have. Despite having that kind of disability politics, actually what I was finding was – I wasn’t in that position at all. And it took me a while, or a long time to try and work out what the recipe was, about where I was, cause you know, I think you can blame the system, you can blame the set-up, you can blame the people who you hire…You can’t blame yourself. I mean it’s not so much about blame – I don’t think I came to a kind of blaming myself, but I came to like what can I do differently. And it’s a combination, like I did things differently., but I also fought for more hours, I fought really hard for more hours, and slowly, slowly, slowly, reassessment after reassessment after reassessment after reassessment, I got kind of a couple more hours, and a couple more hours on that, and then like as my circumstances changed, and I got more hours, and Selasi came along and I got more hours, and then Lucy moved in and we started sharing hours, so I had some of her hours as well… And so eventually, now, and not having the same struggles that I had, and that has helped. Maybe that – you know, how do you ever know in these situations whether I had like a transformation of personality, and that’s why things are better, or if some of these like really real structural things, like real things that have an impact have been part of what’s changed things. I don’t know, it’s hard to always know.

Lani: Mostly it’s – I don’t know, there’s always a combination of things.

Dzifa: Yeah, exactly. Yeah, it’s like, it is a combination. It’s easier to be more relaxed about stuff when you know that you’ve got at least enough to do some of the basics. And also one – my health now is at the stage where I can kind of support the PAs a bit more, in terms of supporting them to know what to do, getting up and out of bed to show them what to do – it is, that does make it easier. Much, much harder trying to help a PA when you’re so fatigued you can’t get out of bed, and you can’t give many instructions, and you need them to kind of get up to speed and figure out what to do. Yeah, so I feel like I’ve gone on for a lot – on a lot at the moment, but I think I still haven’t really got the – what changed. And one of the things that changed was kind of becoming a bit – actually a bit more professional myself, and not shunning away from the employer role, and having to try and just embody it, and not run away from it. And that meant getting – figuring out what the admin was, and back and forth emails, and working out like what I was expected to do to make sure that everybody was getting like timesheets and all of that was all kind of running OK. I ended up making like a spreadsheet with all of the times on to help me with the – and yeah, I had to do quite a lot of that kind of stuff. And then also about employing people, making sure that they can go for a contract, and they sign a contract, and making sure that it looks [a prayer? 00:47:55], like it’s like from the beginning, the first impression is an impression of professional, but also like welcoming as well, like being friendly, and having an informal chat not an interview, but still being like professional by having the admin. Like the bureaucracy makes you look more professional, and I think people then take it a bit more seriously. Putting the advert out there and being like really clear about what I want, somebody who can be on time, somebody who can – who’s got some skills in kind of housework, somebody who’s willing to be in a house full of lots of different people, and lots of diversity, and I’ve been a bit more straightforward about it when I’ve advertised, and a bit more straightforward about it when I meet people –

Lani: Like who you are and –

Dzifa: Yeah, who I am –

Lani: how you live and stuff.

Dzifa: Yeah. And a bit more – a bit less trying to advertise it and a bit more trying to be like ‘Actually, I’m a little bit tedious about some things’. There’s a little bit, there are a little bit things that I am quite rigid about, and punctuality is one of those, and you know, being able to do some basic housework is one of those… and being able to – not be inhuman or in… not be not emotional, but to put my needs ahead of your own emotions no matter what. And that doesn’t mean that you can’t have hard days, or have days off or things like that, but it’s the – most of my PAs now, that they do sit and cry with me, or they do tell me about their problems, or I can see when they’re struggling. But most of them can still make me a cup of tea, and make sure that I can get out of bed, and help me get Selasi ready in the morning, and not just come in and ply it, at best, I guess. Not just come in and just kind of splurge all of what’s going wrong in their lives on me, and make me feel uncomfortable emotionally in my own house. And that is a really hard thing – I just think I’ve worked out how to detect it now, because I’ve been through so many PAs. I’ve worked out like almost how to tell from the – from the application to the first phone call, to the first meeting. Usually I can kind of get a feeling for it ready, and I started to feel a bit more able to say no to some people, and that’s been really hard, because I’ve never wanted to be an employer and an interviewer, I’ve never really liked competitive things. I don’t want to reject people. But it’s worse than – it’s worse to not, when you know in your gut that this isn’t going to work out for somebody, it’s much worse to employ them and subject the two of you to something really uncomfortable and unhappy, than it is to just be really straight up front in the beginning. I think that’s a lot of what – a lot of what kind of being on the left side, and wanting to be kind of anti, like… authoritarian, can sometimes end up being harmful, because you’re also not being clear about what you want. So…

Lani: And also laying down those needs is really important.

Dzifa: Yeah, yeah. They need that – so there was that element of like learning to kind of take on a role of manager or employer, in a way that works. And also getting help with stuff, like nowadays I have a PA that helps me with my – the kind of stuff that I find harder, like the admin and stuff, and that works a lot better. And just having somebody else to help me think a – like to remind me it’s coming up every two to three, every four weeks and things like that, is really helpful. And then yeah, so the other side of it was – so on the other side, I think there’s a tendency for disabled people who have PAs to expect PAs to act like robotically. And I think it’s a tension, because there is – it is difficult, like we’re talking – or even just today, of having the PAs that I’ve had today, there are things I ask them to do, and they just don’t do it. And there are things I asked them to do and they do it in away that seems like obvious to me that it’s the wrong way. And those kind of like interactions, I think some disabled people get quite angry, because it feels like oppressive, it feels oppressive if someone’s not listening to you, not giving you the power, doing it the way they want to do it, not giving you the kind of power and dignity to have it done the way that you want to do it. So there’s like that element, but on the other hand, like people are people, and just because they’re able-bodied – people are able-bodied, doesn’t mean that they’re tireless [laughs] – they don’t get tired, they understand every instruction the first time it’s said to people –

Lani: I thought it did! [laughs]

Dzifa: You know, like doesn’t mean, you know, there’s things that seem really obvious to you, like if you say to somebody, you know, ‘can you clean up the kitchen?’ That means such a different thing to so many different people. What ‘clean up the kitchen’ means to like Anna versus John versus Tim is just like a totally different things, like someone for ‘clean up the kitchen’ means get down on your hands and knees and scrub the floor, and somebody else ‘clean up the kitchen’ means show it a little bit of a – [laughs]

Lani: This just – is just like swash the surfaces and put everything on the floor basically, or something.

Dzifa: It really really is different!

Lani: Yeah

Dzifa: You kind of – everybody’s got, you know, we all have a kind of bias, a kind of bias to our own way of doing things, especially if you’re like a home-owner or like the person who pays the rent. I think that – that’s something that I’ve noticed as well, is that a lot – a lot of the PAs that you – that I end up employing are younger. They live at home, or they live maybe at uni, but even if still, they’ve never really been in the position where they are responsible for the whole building, so their experience of what it’s like to kind of clean up or run a house or whatever, it’s different. And I do tend to find that PAs who’ve got – who are a bit older and have got experience of owning their house or their space, and being responsible for their space, have a bit more… I don’t know…

Lani: That’s with experience, isn’t it.

Dzifa: Yeah, they know when you say clean up a kitchen, they understand some of the ideas about why you want to clean up the kitchen. It’s not just cause you want it to look nice, you know, I think that’s also like what’s behind it for some people, it’s like ‘oh, you just want the washing up done’, cause that’s what I do at home, wash up, you know, but actually to look after a kitchen and make sure it’s like in a fit state day after day, you have to clean the stove, you have to wipe the surfaces every day, you have to clean the sink, you can’t just kind of let it get all groggy. Yes, you have to wash the dishes, but then you also have to put the dishes away, and you have to organise the dishes so that you can find the dishes, you have to make sure that all the things are in the right place, cause if they’re in the different places then they get lost and nobody knows there they are. You need to make sure that the fridge – you know, those are things that take time and experience for people to have. So the expectation that people who come into your house, answering a job advert often people who have to have… they might be economically poor, but they’ve got to be time-rich, because I – for me, I mean, I need them to come in for what, an hour and a half a shift, an hour and a half in the morning. Like how many people are free for an hour and a half, like 9 til like 10.30? Like not many people. Like if you’ve got another job, then most of the time it’ll start at 9, if you’ve got kids, you’ve got to take them to school, if you’ve got – like there’s so many people that just won’t, so the type of people that you’re gonna get are people who are maybe materially poor, but they’ve got time rich – I don’t mean materially poor like they’re really impoverished, like most of my PAs are not, they live at home, but they don’t have a lot of money and they’d want to earn a bit of money. So yeah, so the expectations I think that disabled people have, I understand that because it kind of comes from a disability space, of like actually, this is ableist –

Lani: I want that –

Dzifa: for you to not do what I ask.

Lani: Yeah

Dzifa: But we have to do that in the context of real people.

Lani: And also over time, I guess like as you build relationships, right. So there’s like other dynamics around the relationships, in terms of, yeah, we haven’t talked about…

Dzifa: Yeah, no, that’s true, and I think that’s the third element of my kind of change in my way of doing – working with PAs, and that was kind of… And I thought – I have started to think about it, about you know, what is the boundary – what is the boundary between PA and friend, and I’m finding at the moment that the best thing is to start in it as in a – on a – in a kind of middle ground of professional, as professional as possible, and over time, then you can kind of start to test that relationship, and to kind of open things up to see if that’s manageable, if the relationship can cope with it. So for example, like you say, like people who maybe don’t – like they come for the first time and they seem – feel really overwhelmed, I don’t know where everything is, it’s kind of supporting them with like showing them where everything is, and helping – kind of give really clear instructions, and then at some point having a conversation with them to just say look, there’s this balance between instructions and you taking initiative, and I think you could take more initiative if you want, like maybe try and do some things, don’t worry so much about getting it wrong, cause you probably will get it wrong, or right, like it’s not quite a wrong or right situation, you’re not in my head, so you’re not gonna do it exactly right. But it’s still better that somebody comes in and thinks ‘Oh, the floor’s dirty, I’d better wipe this, mop that’, rather than keeps having to ask me for everything, like ‘What should I do now, what should I do now, what should I do now, what do you think I should do now, what should I do?’, which is quite exhausting. So those things are like things that you kind of like evolve over time, and also I think – I think I’ve kind of tried to tune in a bit more to what PAs are, in – like who they are and what their skills are, and what their strengths are, because I think I’ve always wanted to have more than just one, because I think that helps it. So if you’ve got three PAs,one who’s always really punctual, one who’s really good at cleaning, and one who’s great at like being sociable, or cooking and kind of doing things that are kind of a bit more chaotic in our household, like cooking is a quite chaotic experience. [laughs] Then, you know, it works really well, cause then you know to make – you know, you know to – you can plan things on the day when the person who’s really punctual’s coming, so that you know that you can get stuff done on that day, you can plan to do your cooking when that person who’s really good at cooking is here, or –

Lani: Yeah, Michelle was talking about that as well, like the… having a team of PAs and like what you can do with that, versus having one.

Dzifa: Yeah, no, it makes a difference. But I suppose, so – on the one hand it’s like OK, that’s my experience, but also for them, like to feel like they feel confident in some – in one area – in some area, it can feel like really – I think it can make people feel really unconfident, because they’re not in your head, they don’t know exactly how you want a cup of tea. You ask them ‘Can I have a cup of tea?’ They go away, they come back and they bring something, and you’re like ‘This isn’t what I wanted!’ And that’s so hard, like on the one hand it’s easy for you to be in that position, cause you’re like ‘It’s a cup of tea, how do you get a cup of tea wrong?’ I’m sure like – but it’s everyone has their own cup of tea a different way. Some people like their tea really black,some people don’t, some people just like show the teabag a look – yeah, just take the teabag out. So I think it’s, you know, it can fe – make somebody feel really stupid, disempowered, unsure about what they wanna do if you’re constantly – and which – but that is part of the job.

Lani: Yeah

Dzifa: It’s finding a way to do it gent –

Lani: I think part of that sort of uncertainty, and dealing with that as somebody who can – could also like… I don’t know, for me I find that difficult, cause I sometimes find it difficult to express how I want something, and then somebody feels – finds it difficult to like deal with that uncertainty of actually I have a lot of uncertainty in my head sometimes, especially when I’m like kind of overwhelmed or whatever, and it’s like some of that’s actually quite… so dealing with that uncertainty is like one of the –

Dzifa: I think that’s really true, and like what my brain – I think I probably have to grow a section of my brain, when I became a wheelchair user, that requires multiple step – making multiple steps, plus also describing things. So someone’s like – I say ‘can you make me a cup of tea’, and then they go into the kitchen, and they’re like ‘where’s the kettle?’ And you’ve got – and it’s a certain type of skill to be able to explain where the kettle is. I know that seems really silly, but for somebody who has no idea where your kettle is, and you’ve got a kitchen full of stuff –

Lani: Or even what it looks like in your case! [laughs

Dzifa: Yeah, my case it doesn’t look like a kettle, so I don’t even know what to call it, a hot water dispenser, but some people don’t know what a hot water dispenser is. So kind of like ‘It’s on the side, next to the kind of tea stuff, so you go into the’ – like to have that in your head, that’s a lot of work actually, I’m not very good at that. I know exactly where things are, but helping somebody else when they can’t see, they’re not in your head, to help somebody else working out what everything is, is quite hard. And when they finally find the kettle, and then you’re like – and maybe you don’t tell them how to –

Lani: What kind of –

Dzifa: how do you – how do you even make it work? I was like there’s a button in the middle. Which button? There’s three buttons. You know [laughs]

Lani: Yeah

Dzifa: But like those things can – they’re small things, but they’re not light. They just don’t feel light between people, in a relationship with somebody else, cause that person feels stupid that they don’t know where your kettle is, or how to use your kettle. But why do they – it’s a crazy thing, how could you feel so stupid, you’re in somebody else’s house, using a machine before in your life, and you do it slightly wrong, like – it’s funny for me, because I’m like – kind of like it’s funny to watch somebody do it wrong, but it’s not – I’m not on a higher ground of being like ‘well, I know, so all you should really know’, but I think sometimes it feels like that’s the dynamic that happens, and it’s not – I don’t mean it to happen but it just happens. So I think those kind of – looking out for those, and trying to work on the relationship’s really important. Making sure that I kind of connect to the people as people, and know bits about them, and that they can feel they can tell me stuff and share, like, achievements, and some people I know most of their family members, and know – hear all about the stories about them, and we’ve negotiated it so it’s not like they just come in and tell me, they wait for times when they know that they’ll be able to talk about those things, and… yeah, so I think those – I think that type of human relationship has changed things. And it is tricky, cause I think in the beginning I didn’t want to have those kind of relationships, because that felt like work. And I think it is work, I think it takes some energy. And when you’re someone who’s got an energy-limiting condition, you kind of have to preserve your energy. But most of the time what you want is that person to come and help you preserve your energy. And so it’s really hard to feel that you’re in a position where you’re having to use energy to make that person. feel comfortable, and build a relationship with somebody that you don’t know, that you haven’t chosen as like – and not – if you had to choose out of all the friends that you would have chosen, it wouldn’t be that one, but you’ve got to make a relationship with somebody. And… and you do, and it’s a different kind of relationship to a friendship, but it still can be really close, and sometimes from it I’ve gained friendships. Much more now than I used to, because of the way that I treat it, I think, that I do tend to like have more positive relationships with people after they finish working here, or even while they’re working here they become more friends. For example at the moment we’ve got two PAs here at the moment, one has come to a party with my neighbour, and is just hanging out, even though she’s not supposed to be working. And that has happened, it hasn’t happened overnight. It didn’t happen on day one, cause that would have made it not possible. It happened over like building a relationship over time, and starting in a very professional way, but not a kind of like ‘strictly professional, you must be a robot!’ way, and then gently building in that relationship over time seems to work better. But I mean it’s so easy to talk about a story and an arc as if I’ve somehow reached the end point. I am definitely not there, I’m not enlightened, I haven’t figured it all out, I’m sure [laughs]

Lani: Really, Dzif! [laughs]

Dzifa: I’m sure all of my PAs would complain about me forever, and I moan about them as well. And you know, like looking at my house at the moment it’s a mess, you know, I haven’t got like – everything’s not shipshape, and everything’s not working perfectly, but I’m a happier person, I suppose, because it – it was exhausting and miserable sometimes, so whatever’s happened has made me happier, and hopefully it’s made my PAs a bit happier. But I can’t speak for them.

Lani: And I think we’re coming fairly close to the end now, so we wanna – is there anything else you want to raise, around like class, race, disability oppression, queer stuff, anything?

Dzifa: [inaudible] I don’t know.

Lani: If not that’s fine, but –

Dzifa: I think we probably could talk for a whole other podcast about those things! [laughs] Yeah, I think those are really important, and about the power dynamics, I think they have an impact on it, but yeah, I think probably [music starts] we should stop cause we’re probably overrunning into two podcasts. [music continues]

Lani: I hope you enjoyed this podcast. I would love to hear your thoughts on it. I would also just love to hear from you in general. This year, Sideways Times will be focusing on the broad theme of care and solidarity, and I’d like to hear your thoughts on if there is anyone you think we should be talking to. You can contact us on Twitter @SidewaysTimes or email at sidewaystimespodcast@gmail.com. I would like to thank Marlon Nirenda from Dis Art You Know for the music on this production.

One thought on “Conversation with Dzifa Afonu – part one”

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