Below you can explore touch diaries, audio interviews and images created by five disabled and neurodivergent collaborators. Each collaborator kept a touch diary for 24 hours, charting episodes of touch and information such as when it happened and how they felt. Artist Amber Anderson visualises these diaries and each collaborator discussed their experiences in an interview with Invisible Touch host Jess Thom. The collaborators’ experiences of touch draw attention to the complexities and possibilities of care in new ways.
Grace Spence Green
So, my name is Grace. I am currently a junior doctor working in London. I sustained a spinal cord injury nearly four years ago now. So, I am a full time wheelchair user as well. I am 26, I am a brown-haired white woman that wears glasses full time as well. Um, yeah, I’m really passionate about sort of challenging stigma, and ableism and inaccessible spaces.
I'm really interested in how you found the experience of keeping in touch diary.
I really underestimated the amount of times I touch patients. And the amount of times I am touched by other people. I really saw the contrast between the touch I receive and give in my workplace and what it's like when I'm suddenly out of the workplace. I thought that was really interesting. I kind of had a feeling it would be like that, but the actual contrast to me, was really surprising. And I think it made me think a lot about consent as well. And not just my consent, but if kind of patient's consent through that, and how each time I touched them I'm not actually asking every time for consent. And I just yeah, that was really interesting.
One of the things that just was really fascinating and came out really strongly was, yeah, it was that difference between your experiences in a professional context, in a working context, and your experiences in public space. And sadly, lots of your experiences in public space didn't surprise me as I'm also a wheelchair user and lots of those resonated with me. But it must feel really weird to be perceived and for people to interact and connect with you in very different ways.
I only just graduated so I started working last August, and it was really jarring to me to suddenly be in this position of power and feeling like I'm slowly kind of feeling more in control of my days and feeling like I have quite a lot of responsibility. And people will like look up to me for answers. And are very nice to me. And patients are lovely and obviously want me to help them. And then I suddenly get out of work, I take my lanyard off and just a lot of the time I feel like a second class citizen, you know. I can't get into that cafe or some random man will come up to me and say something horrible, or try and push me. I just feel completely invisible. Like as I'm sure you know, most wheelchair users do.
There are a few moments in your touch diary that just made me sort of draw breath in particular ways. Some because of how tender and beautiful and intimate they were and some because of how brutal they felt. It's almost like our bodies become magically, yeah, unseen.
Yeah completely. And I remember that day it was just extra kind of upsetting to me, because I'd had a really pleasant time for my friend's birthday and felt very welcome. And you know, loved in this space. And then suddenly, it's just this reminder that no one expects a wheelchair to be here. So no one’s looking out for me. It's difficult because that is actually something I feel out of work and in work. All the staff areas are inaccessible, really, there's no disabled staff toilets and things like that. So, I don't really feel like I belong there either a lot of the time.
I was also really interested in your relationship with touch and equipment. And there was some beautiful moments where you're putting people to sleep and you talk about holding the oxygen mask over people's mouths and noses. And it's like there was something that just felt so tender about that. And I've never thought about that act to and what an intimate act it is. And also – I was interested in your relationship with different types of equipment that you sort of touch really regularly.
I only started this particular job three months ago, and I nearly cried. I think the first time because I remember it was a patient that was really anxious and he was crying. So I was wiping his tears away while I was holding - and it's not something you normally have to do as much with patients - holding their face. And that yeah, that feels really, suddenly, very intimate. And suddenly, I'm holding the oxygen over his face and I remember it felt I thought I was going to cry the first time. It still feels really poignant. I had to have eight-hour emergency spinal surgery and I remember - I don't remember much - but my anesthetist I remember so clearly. An yeah, equipment, it's a really interesting one. I use medical equipment on patients but also myself 10 times a day. To me, it doesn't really feel like medical equipment. I use catheters and for me that just sort of feels like I'm just looking after myself. I find that really interesting. I guess I've become so used to it in my daily life.
I think that's one of the things that's really interesting and feels really exciting about having disabled doctors and healthcare professionals is that mix of lived and professional expertise. When I kept a touch diary I was very aware of like (so I need hand over hand support to do a catheter) that my PA will squeeze my hand and there's something amazing about that - they squeeze my hand and it gives me this moment of control, biscuit, that I wouldn't otherwise have. You know, in that same day that I recorded my touch, I also had my hand squeezed in reassurance. And it's like the, the idea that the same acts of touch unlock very different possibilities.
I've got a select number of people, that when they're pushing my chair, or when they're doing something for me, and I kind of lean my head back on them, it just feels like we're doing something really close together. We've got this lovely relationship, an open relationship that we wouldn’t have if they hadn't had to kind of help me with some of these things. How I feel about my wheelchair is just an extension of myself. So, when someone's pushing it or handling it, you can really sense how they're doing that and what their, what the emotion behind their actions is. I think that's really interesting.
I had a moment, I was brushing my teeth with a PA, I was out of my chair and my chair was like, you know, a few meters away from me. She got toothpaste on my wheelchair, she said - sorry I got toothpaste on you - and wiped it off. I was physically separate from my chair. But it really made me laugh. That was exactly how I feel about my chair. But she was recognizing it as part of my body, whether I was touching it or not.
Yeah, I love that.
In terms of your sort of relationship with your colleagues and perceptions of touch, do you think you have different understandings than other people or colleagues within the system?
Yeah, I think so. I think I'm much more wary when I am with a patient, and they may not be able to move, I really want them to feel in control. Because I just remember, a lot of the time that I was in hospital - I spent three months in and a lot of time I didn't feel in control. And I felt violated. I just felt like I didn't have any autonomy. And so that's something that's really, really important to me. And I think last year, my last job, there was a patient who had a muscular disease, so he couldn't move his upper limbs and his nails had been digging into his hands a lot. He just was asking if I could get a nurse or if I could get some scissors so his wife could cut his nails. And that just made me feel so horrible because I could just completely know what that feeling is like - just out of control and feeling like you have to rely on other people. And so yeah, I mean, I cut his nails, and it was just so small, but it felt so big to me. Because a lot of the time in my day like acts of care I'm doing they don't feel immediately, like beneficial. But this one, I could almost sense his relief. Yeah, I think I maybe value small acts like that, possibly more than some of my colleagues. But it's interesting to me because the touch diary really did make me think about consent. Because I thought we consent for procedures, but then there is sort of an assumed consent that will then go along – we will do a cannula and then we will put the oxygen mask on and do all these things. But sometimes Yeah, I'm not sure if it would be better to sometimes check in more.
I wondered because I sometimes feel that for people who work in hospitals, for doctors and for healthcare professionals, it must be that some of those things (because that's your job and you’re doing it all the time) must become so routine. That maybe the touch becomes invisible? Maybe the intimacy becomes invisible? Maybe how big and significant and intense something like that might feel like a really easy procedure but it’s the first or only time that's happening for someone.
Yeah, I completely agree. I remember after my injury, it took me ages (because I just had had pain and kind of medical trauma) for me just to experience nice touch again, because I felt so disconnected from my body. And I think for a long time I just sort of ploughed through. But no, I remember my therapist asking, you know, what are some touch things that make you feel nice? It was a struggle to name them because I just felt like I'd sort of disconnected from my body in a way.
So, if I if you were thinking of like things that you would want, particularly non-disabled people, either colleagues or people in public space, to know about like your relationship with touching.
Able-bodied people kind of underestimate how often disabled people are touched in a day. So that's why I'm sort of so glad that you're doing this, not just kind of touch, but their personal space invaded. They underestimate the importance of that. And so that's something I really think needs to be valued - someone's personal space and feeling in control of their environment. That doesn't mean that they don't need to be looked after in some way. But it's about enabling people to feel in control. What I’d really love for the future of the world really is just to rethink the idea of care. I see it more as a mutual understanding - a relationship between two people instead of this sort of giver and receiver. People will see my partner or someone pushing my wheelchair up a hill. And their view of it is that I'm very passive in that relationship when actually I'm maybe the one directing or the one needing to get somewhere. So that's yeah, that's something I really want to get across as well I think.
I think that's a really lovely way of changing the framing of care - what it makes possible and what good care makes possible is just transformative and it’s limitless and is huge and is gorgeous. I think that I feel very strongly in agreement with you about the need to like have more depth and range and breadth to how we think about and talk about care. Thank you so much for your perspective it feels endlessly fascinating to me.
Matilda Feyiṣayọ Ibini
Hi, I'm Matilda Feyiṣayọ Ibini. I am a black woman in her 30s, I wear glasses. I'm wearing a blue African print bonnet and wearing a blue t shirt. And behind me, you can see a very bright window, posters on the wall, and maybe the corners of my hoist. I am a bionic playwright and screenwriter based in East London.
Amazing what a great intro. I'm really interested in how you found keeping a touch diary and keeping a record of your touch.
It was a very interesting ask actually, because I've never thought about a touch diary. And actually, I was kind of intrigued - what does that mean? How do you define a touch diary? And then as someone who is touched very frequently, like, every day as part of my literal existence, I was like, I imagined this is going to be a lot. There's going to be a lot to log! So, I was actually trying to figure out how could I do this economically, if I could just sum it up into what that action is, of the touch. What is the touch doing almost, I think was my focus as I was logging, it was really interesting just to see how so much of that touch is survival, like I need to be touched to live.
Yeah, it was really interesting reading your touch diary, because lots of it felt very familiar to the sort of touch I need for survival too. But I think when I first, biscuit fuck, started to keep a touch diary I was quite focused on (I have some challenging behaviors) and I was quite focused on touch around them and thinking that was a huge part of my day and my week. And actually, when I kept a touch diary, I was then really intrigued and surprised by how often I was touched, and also how much it unlocked in my life. And how and how much of that was survival. And how much of that was about the quality of my life and what touch made possible. Was there anything that surprised you about paying attention to touch in that way?
Yeah, actually, I think one of the surprising things was how often (irrespective of like, the quality of the touch, or what the touch was for) what was really interesting is how often I feel pain. So, I experience chronic pain and I manage it with pain meds, but when I was doing this touch diary, I realized like, my pain meds don't necessarily take away the pain, but they lessen it to a level where I can almost function. And so, I kept quite frequently when asked - how does this touch make you feel? Or what did you feel like? - writing pain. But it wasn't pain from the touch, it was pain that just always is there. So, I found that really interesting almost by doing the touch diary also helped me acknowledge some kind of invisible pain diary that I don't keep.
One of the things that your diary made me think of was around the sort of rhythm of pain and medication and how those rhythms (the rhythms of touch and of routine and meds and pain) all form a sort of web.
Yeah, I totally relate because actually, existing in this body I often feel unsafe. Like my body cannot do things that non-disabled people can do. So, when I have good care, and when I have that kind of respectful touch that awareness of the limitations of my body, I then feel safe within my body. When I've got carers and pas who understand my body I feel a level of kind of inner peace and safety in my body.
I was really interested in your relationship with equipment and aids. In your touch diary you mentioned a few and I was interested particularly in your feelings and relationship to them.
Yeah. I mean, it's one of the reasons why I described myself as bionic or like a bionic writer. It doesn't just describe my present situation. But my historic relationship with equipment that I've always needed some kind of equipment, adaptation, or physical mobility aid to move around in the world. To just be. So I feel like I've lived quite a bionic life. And not to say that that my relationship to that equipment has always been really clear and straightforward. No, it's been very complicated. Like, you know, not using leg splints because I didn't like their colour or not using my hospital grade crutches because I didn't like their colours. So, I went out of my way to buy crutches that match my laces. The first time that I got my power wheelchair I didn't sit in it for quite a while because I was so conscious of like, Oh no, this is another stage of progression of my condition and now I'm even more visibly disabled. I'd spent so long of my life trying to (because of internalized ableism, but also survival) appear (almost pass) as non-disabled essentially. I'm non-disabled, but with a limp or I'm non-disabled but with a crutch. And all of a sudden, now I was dependent on a wheelchair. I'd use it at home but then I wouldn't go out because I wasn't able to walk when I was out. It's almost like I had to go through these stages of acceptance. And even for example, like using the hoist, I used to hate being hoisted, not just because it was uncomfortable but just this idea that - I've got legs, they're still there - it was really frustrating. And now I love my hoist, like I can't imagine life without it, because it's what enables me to have the kind of life that I live. I know for a fact that I would have benefited from a wheelchair much earlier than I actually got one. And that might have prevented a lot of different difficulties I'd faced had the people around me not been pushing me to keep doing physio. Or you want to maintain the muscles in your legs, yada, yada, yada. But actually that was at the detriment of my mental health, because you're pushing my body to do things in it couldn't do, but my mind was saying do it, do it, just keep going. Just keep trying until it . . . until it was like at breaking point.
That's interesting in relation to care, because lots of that comes from a place of intense care mixed in with ableism and fear and very medical understandings. You can't just understand bodies from a medical point of view, because they exist in a social and emotional world. But when it comes to disability, there's so much emphasis on medicine and on looking to health professionals for answers, which they're also really keen to give, but I don't think they’ll always have the full picture. Are there touch experiences that you really like or that you really value?
Yeah, so I'm not good at makeup or even the concept of makeup. But I have a few carers who are pretty damn good at it. So, when I feel nervous about having to go somewhere, and they're able to kind of like make me feel a little bit at ease by doing my makeup, I really like that. Or hair care treatments. So, whether it's like washing my hair, or detangling it or moisturizing my scalp, like those things often feel really soothing. They're very gentle and there's tenderness I feel through it. And again, I still feel respected when they're doing it as well.
And negative touch or not being able to move away from touch that is uncomfortable or having people in your home where that doesn't feel comfortable is complicated and challenging and can just be all consuming and it can totally destabilize things. It's something that lots of non-disabled people don't necessarily have the language to understand or to talk about. So it can feel quite lonely, I think.
And also a lack of imagination. I go on about this a lot about how society, school, education tries to drum our imagination out of us. That when we become adults, we should not dream, aspire, think outside the box, imagine, creatively problem solve. And so for me, it makes sense as to why non-disabled people feel such a fear around disability, care, the idea of touch. Like, oh my god, they clean your bum! Yes! Just like your mom or parent or guardian did when you were a child. Like, it's not that different. Like they do it in a way that's respectful and it still allows you to be a whole dynamic person. That's like the go to one I'm always hearing that - they see you naked! Yes! That's their job, but they're really good at it.
And it's their job and they're doing it every day, so it doesn't feel the same. Yeah, it's not like being on Naked Attraction or any of those game shows where there's like a spotlight and a buzzer and a load of judgement is like you are just trying to get clean!
You know! And they make sure my I'm colour coordinated!
So, my name is Charmaine and I am mixed heritage black woman, light skinned, with glasses, I'm in my late 30s now (crept up on me) and I've got short, dark afro hair, which currently I’ve got wrapped up in a headscarf. Which I tend to do a lot because my hair is messy. And I'm wearing glasses.
Tell us about who you are and what your sort of setup is.
I've started to just say I'm an artist, because I feel like that covers it all - my main disciplines being theatre and music. But I also do some visual art, and then like textile dyeing. I'm a mother to a four-and-a-half-year-old, who's very energetic. And I'm married to my husband, Ollie, who's a musician and we live on a narrow boat, quite a small space. Also, like me and my kid are autistic. I'm pretty sure Ollie, the third member of our household, is also neurodivergent in some way. I don't think he'll mind me saying that. Oh, and I'm a BSL user. So, I grew up with deaf parents. So, I feel like there's an interesting intersection in terms of my cultural identity in that I am culturally deaf, but not actually deaf. I feel like that does has a quite big impact actually on how I see the world and how I experience the world.
How do you think all those different intersecting identities shape or influence your experience or relationship to touch?
I don't really like being touched very much. I'm not one of those people that like drapes themselves over their partner on the sofa. Like in my family, me and my sister don't really hug but my mum's really huggy. And my brother is. And the only person I'm sort of okay with hugging all the time is my son. And I like him cuddling me. So often with deaf people, if you're in the same room say to get their attention, you'll maybe like bang on the floor or like, you'll tap them on the shoulder. I remember as a young person like being tapped and it feeling a bit much sometimes. I love a massage though.
Like so I like firm touch. But gentle touch, I feel like is really painful for me. So you said that sort of massage, is there something about massage, that is a different, that is a different type of experience that you think you process differently?
Yeah, I can't bear like someone just brushing up against me. It's like 'blurrggg'. And I think also the other thing I find difficult, like, particularly with my kid is the leaning. He has this thing of leaning against me and I find that really hard. It really, like puts me off balance. And it's almost like the thing he needs to feel balanced, throws me off balance.
How did you find keeping the touch diary?
Both you and Will had said it's quite an intimate thing. And I hadn't considered that at all. I was just like oh yeah sure. Because when I thought about how I interact with the world, and with touch, I got to about like an hour and a half in, I suddenly felt quite sad, because almost everything I put down seemed quite negative. I'd been like punched and I'd been kicked. And I was like, oh my gosh, I've not even been awake an hour and I feel touched out already. I felt sort of broken down. I don't think the level of touch was any different to what it is any other day. But because we were day five of isolating with COVID I had gotten to a point where it was really wearing thin and I was feeling really tired.
I found listening and reading your diary really moving. And really interesting from a care perspective, like what felt very present was the sort of strength of the unconditional love that you have for your son. Part of the care that you give is around sensory and physical discomfort in terms of your own sort of sensory requirements. And I found I saw beauty there.
Thank you. And I think also one of the things I realized during the touch diary was how many different types of touch I get with Rudy throughout the time. So like, he'll be punching me, he'll be leaning on me, he'll like scrape his teeth down my leg and then he'll just sit and hug my leg. And like remembering that some of the touch is actually really lovely. And I do find it a really difficult line to walk, putting in my own boundaries and looking after myself and then also taking care of his needs. Because he's still breastfeeding and I really don't want to be doing it anymore, but it just seems to be the only time he's truly still. Actually, sometimes he's not even still, but it's almost like I can hear him winding down. I can hear the cogs in his head. Like he'll sometimes be like, humming. I'm never that worried about what other people think, except when we're on the train, making sure like, I stop him licking someone's head when he's on the train or something, you know. Rudy loves licking my dad's face because it's stubbly, my dad like shaves quite regularly. So, he's got this like, you know, sandpaper texture face, and Rudy just loves licking his face. And my dad is like, I don't care, because it's his grandson. And he finds it really funny. Whereas for me, I find I really, really don't like how it feels. And just trying to find like that balance between what's socially acceptable, what's physically acceptable to me, and also making sure he doesn't feel shame about it. I don't want him to feel ashamed. So, it's that thing of like trying to like to put in boundaries and say, actually, you can't touch me like that. You can't touch me there.
It's such a complicated thing, thinking about how we, how we learn about touch and you know, when I was thinking about Invisible Touch, I think I was definitely thinking about like, the touch that is so routine that we don't notice it. Or the touch that is so (especially around care) that for disabled and neurodivergent people is often really unfamiliar to people who are non-disabled, and therefore they don't think about it or consider it. What I hadn't thought about that I think you've raised in a really interesting way is touch that's invisible because there are taboos around it. Biscuit, as someone with Tourettes who has some compulsive automatic impulses to touch, particularly things that I know I shouldn't touch (like things that are hot or sharp) it's such a weird and difficult thing to experience physically and practically. But it's also difficult to experience emotionally and to worry about how other people interpret or perceive it. Char, the other thing that I noticed about your touch diary that I thought was really interesting, was the role that touching textiles and fabric and spinning - the sort of repetitive touch or rhythmic touch - plays for you.
It is such an important way for me to wind down. Feeling yeah, like different fabrics, and spinning in particular because it is rhythmic. And I feel something soft, and it changes in my hands. I'm really long limbed, I was told by an osteopath that people with my body shape often need to move a lot. And what I like about spinning and knitting is that even when my energy is really low, it's a way to constantly be moving, but in a very calm way. That doesn't make me tired. It just allows me to constantly move without you know - being the person who's just like bouncing their leg next to their partner while we're trying to watch TV. Because I am a really restless person. And that's the thing with Rudy the thing that makes him so powerful is that he has my restlessness, but his dad's muscle density. So he's really strong.
Thank you so much for being involved in the project and for your contribution. And for being so open. Your perspectives, and the way you talk about them, is really important, and definitely has made me think of things that I hadn't thought about before that I think are really, really interesting in relation to touch.
I'm Sam Castell-Ward. I'm a 34-year-old autistic man. I'm an artist and I also work for an arts organisation, mostly from home at the moment. I look quite young to most people. I'm white, I have like dark brown long hair with quite a bit of grey at the front, about where my hair parting is. And I have a hoop silver earring on my left ear.
How did you find the experience of keeping a touch diary, biscuit?
Keeping the touch diary felt quite demanding. I felt like I had to write down any bit of touch. And when it happened, that was meaningful to me. For some people, if they were to read my touch diary it looks like I'm writing down every single time I touched something or anytime the thought of touch came to my mind. I think because so many bits of touch that I don't think will be important to most people are really important to me.
Is there anything that surprised you about keeping the touch diary?
Maybe it's something I hadn't realized how much I noticed - someone brushing past me - I didn't think that I'd be writing about that so much actually. It happened to be that one of the days was when I was at an open mic in a busy pub. And I hadn't been to that pub before. So I didn't realize how busy it was going to be, which was a bit overwhelming. When I was a little kid, I remember I never liked being touched. When meeting family, I didn't want to give people a hug or kiss. And I never wanted to be tactile with family members or anyone else really. Then when I got a bit older, when I was maybe 11 or 12, maybe even younger, I found that I did want to touch but I think I associated it with intimacy, like between romantic partners. But I still tend to still not want to like hold hands etc with my family members, I still think of it as an intimate thing.
And there were so many moments in your touch diary that I found interesting or that resonated with me or that made me think of something that I hadn't thought of before. There was another bit where you described a physical feeling in your mind that I was really curious about, it was a feeling that you seemed to have a strong sense of as a touch that maybe wasn't existing in a real space, but was in your mind?
There was a time when I was seventeen someone who was quite horrible and kind of quite creepy and sort of bullied me. And I think it was when I was 17 when I started to think I didn't want to hang out with him anymore. Then because I thought of him as the most sort of horrible person ever I would have this feeling of him being on anything that he touched, and I would have lots of issues with my OCD. And I would have to sort of wash my clothes if I thought I'd touched anything that I thought he might have touched. Sometimes I can have that same experience with other things as well. In my touch diary I talked about when someone was picking their nose on the train and me being concerned about trying to not touch anything that that person had been touching. And then I had that kind of feeling of that even when I was trying to eat some crisps while I was walking home. I could feel that kind of sensation based on that movement of the guy like picking his nose, which is pretty nasty. Well, I'm glad it eventually that feeling did eventually go away. But it didn't go away until I ate lunch a bit later on that day.
It sounds like you pick up a lot of detail in your environment. That means that you have lots of information but maybe that that sometimes can be quite overwhelming? I was interested in your experience of touching in relation to giving or receiving care.
I'm sometimes worried about when it's okay to give someone affection in a caring way or in any way because I tend to worry about - I guess particularly as a man - about if I'm going to be harassing someone, particularly if that was a woman for instance. So, I tend to be cautious about when is it okay to give someone a hug or touch their shoulder or their hand. I tend to wait to see what it looks like they're going to do or I tend to wait for someone else to signal like sort of affection - whether it's in a caring way or just a friendship or relationship way. I tend to wait for what it looks like somebody else is going to do. Sometimes that can give the impression I don't like touch or want touch. I remember someone who would normally hug everyone but then she didn't hug me - I was like alright - but was that just because it looked like I was kind of backing off? Like I didn't want to be hugged? But it was just that I was trying to not initiate because I didn’t want to look forceful. People tend to pick up things from body language. Certainly as an autistic person that’s something I've known other autistic people can relate to - people assuming things from your body language can be a really negative thing. Because we don't tend to give body language in the same way that non autistic people apparently do.
Yeah, I was gonna ask you about whether you thought that that line was complicated by being a neurodivergent person? Or even whether you thought that neurotypical people make assumptions about your preferences around touch?
Yeah because I think there’s an assumption that autistic people don't like to be touched, which isn't always true. And I think it's all about consent really - you just might not consent to the same types of types that other people might at other times. I think even people who don't know I'm autistic, I think they just think from my body language, they'll, you know, assume things from my body language. The way that I come across to most people, I think, my body language and my tone of voice comes across, like I would rather not be touched or have affection and be left alone. That's not the case. It's just the assumptions people make often based on things like body language or tone of voice.
And I think the other thing that I was really interested in was you talked about the sort of sense of closeness that you found at times through videos and text messages and voice notes. And I think that that was something that I discovered through the pandemic - that sense of connectedness that I associate with being in people's physical presence and physical touch. That actually some of that connectedness I could get from things like voice notes.
You could sometimes feel affectionate with someone you’re speaking to even if they were in a different country. I noticed - possibly my best relationship - might have been with someone who I dated last summer and she lived in a different country. And we never met each other in person but we felt very close. And we were able to provide video messages and audio messages and texts to feel closer and feel the same affection as we would if we were spending time as a couple in person. And also, there was another interesting thing about touch with speaking to someone remotely. I remember a friend who likes to be quite tactile with people and touch people and stuff - I realized that if we both were talking on the video and we put, say our hands or fingers, both up close to the cameras close up. So, if she had say her finger, holding up in front of the camera, and then I put my finger there so it was almost touching the phone – then it will feel as if it was creating a physical sensation. Like two fingers were touching in a tactile way. In some ways it’s like it's tricking your mind because it feels like you're actually touching because of the visual thing.
I really like that. And I think it also shows the sort of creativeness and inventiveness in the ways that we find to show care and connection and friendship and love to each other. It's like through the pandemic, I felt like there was this moment of like loads of people experimenting with different ways of doing it or having to find different ways of doing it and to sort of discover something and share it with others often feels like a really powerful act of care. So yeah, thank you for sharing that. That's really interesting.
How did you find doing the touch diary? And like paying attention to when you connected with other people? How did that feel? Did anything surprise you?
Not really, but its a good experience and to reflect and really touch in because I have some things with touching. Like if somebody touched me that I don't want them touch me it really makes me feel moved by the feel of difference and then sometimes I feel sad. And if somebody give you a hug the feel that different touch calming you, know what I mean? So, it's really a good experience that you come up with this that I get to really look into really touching, that it is so important within a human being, you know, you sense a thing where, it's feelings.
And what about in your role as a carer like, have you thought about touch as part of your job?
Not in a sense that I really think about. But there is times, before being a carer you maybe wouldn't have touched certain things, but being a carer now and you're putting your heart to it. Not even just a job but it takes your heart to really take care of another human being you know. Your going to have to touch, where you never think you would want to touch and touch things that you were really never interested in touching. But that is where being a carer if you have the interest to really learn and really care for people when they really need to care, you know?
Do you think that your work and being a carer and providing care has changed how you think about it for yourself? Do you think you feel differently about receiving help or care yourself now?
Yeah, there's things where as a woman first, when you're younger, you think, Oh, you don't want that to happen. Even now getting older, I'm going to doctor regular and you have to take off your clothes, its different, because I was very reserved, and then being a carer, it really helps me to have more secure, feel more secure in myself.
It must be really hard as a carer when you know someone needs that touch and if they're not consenting to it, or they don't have it. Because I sometimes say that the times when I most need support are the times when I'm least able to ask for it. Sometimes that's fine, but sometimes I will be resistant to that and I think that I recognize that that puts the people supporting me in a really tricky situation.
Yeah, when me became a carer, I never think it was just about the pay or the hours or what have you. I want to enjoy doing things. I want to change people life, you know what I mean?
Yeah, one of the things that surprised me when I kept a touch diary for a longer period of time, fuck, was that I think that when I started keeping it, I was really doing that because I was thinking about touch in relation to challenging behavior. What was funny and what was surprising to me when I kept a touch diary for a week was actually I get touched all the time, but most of it has nothing to do with challenging behavior. Yeah, most of the touch that I experience is about moving or washing or eating or playing like, biscuit, and actually challenging behavior was a small part of it. But I think, biscuit, because of my discomfort about how I behave and the fact that I need that support –
No, you don't have to because would you believe that during my lifetime a lot of people do have tics who do have Tourettes them do some of the same things!
Yeah. I was starting to really think deep and what me realizing is that a lot of people who don’t have Tourettes, who don't have tics, them do even worse than what you do and then say sorry or them say Oh, I didn't mean to do it that and then will go back and do the same thing. You see what I mean? So that is understanding the difference between those people and you. And another thing is that is to realize without somebody have to tell you - because you know me - I will observe anybody around, even the cat me observe!
I noticed that the cat made it onto a touch diary.
Yeah, even the cat because me just observe everywhere. I know if you wake up you know, I can tell whether you're in a good mood - even talking to me on the phone - me can understand if your voice don’t sound right to me, or whatever, that’s how deep me observe.
Yeah, you're really thoughtful and really attentive and I think, biscuit, sometimes when people say oh, what makes a good carer people would automatically think of things like patience and calmness and kindness. And of course, those things are good and those things are useful. But actually, the thing that for me makes someone a really good person to spend loads of time with and to provide care for me is someone who is thoughtful and attentive and able to think for themselves and able to challenge me if I'm doing something that isn't sensible.
We all need a space. Even when we don't even know why we need a space. A special space where me and you know with different space what space we need. So, when you go in somebody's space like your space, you have to give you space to make you feel comfortable within yourself.
Yeah, it's intimate being in someone's home and it's intimate to accept someone into your home. One of the things that (because you've supported me for a long time and we know each other very well) I feel like for me that support goes in both directions in interesting ways and we know each other.
I really appreciate it and you've done a lot for me in the same way and you show me what’s love because, you know, people talk about love and sometimes me say what is this love? But you show me what is love.
You show me what's love.
You don't have to be telling somebody - Oh I love - that is not it. When me really moved that’s me I can really trust you and me like to know that you trust me.
And when you're in my home, it feels more like my home when you're in it than when you're not. You bring a laughter and an energy and a love to my home that I really value and some of that is because you support me and care for me in a way that isn't clinical. You take care of the sort of medical requirements but you do so much more than that. Taking time say to think about touching this way feels important because it is something that is a big part of my life and that’s a big part of your life and it's easy not to give time to. And if we don't give time to things and we don't learn.
Yeah, and you know, this bring back a memory to me and I never realize it. I'll always remember - I don't want to go into big detail - but I remember one time maybe I was about maybe nine or ten and my mum give me a hug and I never forget it because, you know, when me small, when me alone - not that I’m jealous because me love me brother and me sister - but you know children after she start having children that affection gone so far because me becomes the mother. So, she never give me no form of affection she mostly abused me but that hug she gave me is like. And there was a second hug when I think it was when me brother died. And she was in somewhere and I never get on for too long when my brother died she come out and I went down there and she hugged me. Those hugs come in like the world to me until now. So, know that you really bring me forward for me really realize about torch. I realize it long time how important it is but never as deep as what you letting me know. So now we will be thinking about - I've always been a person I don't like some people, some people in Jamaica them talking and them man are all over you and people like that me keep far from them because me keep having to the move. Yeah, so you really bring me to realize how important that touch is. But I will tell you I never forgot those two hugs, like she never hugged me all my life I can never forget how me feel. You know I mean?
Thank you for all the care that you give to me and thank you for being up for this chat.
I thank you too because me learned so much and the love you show me and, you know, you teach me faith, to have more faith in the human race you know what I mean - because sometimes me lose it. So now working with you I really really get into myself better.
Yeah. Should we end with a cuddle?
Love you Jess.
I love you Joyce.
About the contributors
Artist, activist and part-time superhero, Jess Thom co-founded Touretteshero in 2010 as a creative response to her experience of living with Tourette’s syndrome. She has written in the mainstream and disability press, including the Guardian, the Observer and Disability Now, and has been a Wellcome Trust Engagement Fellow.
Amber Anderson is a multidisciplinary illustrator and designer with a passion for bringing people's ideas to life through visual language. Amber specialises in live scribing, a skill where visual notes are taken for workshops, meetings, events and conferences. Using visual communication, ideas, discussions and feedback are recorded in an engaging and illustrative way. Some of her past projects include published books, hand-drawn murals, apparel design, wayfinding maps, illustrated board games, activity booklets and more.