Artists Demi Nandhra and Toni Lewis were invited by Alexandrina Hemsley to share the current thoughts and experiences that are shaping their friendship and collaboration in the form of a WhatsApp conversation thread. The pair roam between hiding, being seen, allies and the demands of capitalist working conditions on productivity and performing invisible illnesses.
Demi: So yesterday what really got me was time. I can only work a certain amount of hours but the shame and guilt I felt for not doing it really had me. I’m thinking about can we really set are own parameters and boundaries for working when working in other contexts. Simple things like someone wanting a meeting at 9 or 10am and I’m thinking “if I dont exercise this morning I will be ruined for the whole day” but still I agree to the meeting and ignore my needs
Toni: Hmmm… I wonder if this ever goes away. Or stops. I wonder if you get to a certain point in your career where institutions inherently or instinctually respect and/or expect self-care or the things you need to do to as standard. Where the question is posed “what time could we meet tomorrow? When would be good for YOU?” How flexible do we need to be… when does flexibility cross our boundaries… our ever-shifting boundaries.
Do you feel resentful when you agree to something you know goes against your needs?
Toni: How do we use the tools we’ve developed I.e disability awareness documents in these circumstances?
Toni: Interesting to me is I’m currently far too debilitated to care about others needs in a … bodily way? I physically cannot work how this industry demands – Not right now anyway. I’m emotionally and mentally exhausted which is quite literally the only space where guilt seems to not be as much as a problem because all my energy is going toward basic function. It will come later though …
Demi: I don’t feel resentful to anyone except myself. Or I do but just resent the system because on individual levels people have empathy and understanding but then that is undercut with the pace and ferocity of capitalism. I think about tools a lot though and how tools can also be used against people with invisible disabilities.
Demi: I found myself thinking about sick woman theory this weekend
Demi: Black pride.. and how so many couldn’t attend and be part of the collective protest collective joy. Because it is about being physically seen in public spaces
Toni: Can you explain your thoughts here a bit more? I’m interested in the tools against people with invisible disabilities and what that would/does look like?
Toni: Yeah I feel this keenly. I was invited and knew I would be safe w/tribe but I’m too… vulnerable to celebrate? Quiet solidarity is all I can offer atm and that has to be enough but I know that won’t make any real change
Toni: BDD, ADHD, Depression & Mixed Anxiety disorder, HSP, RSD, Mild PTSD, Aries, INTJ/EMFP (not actually but I haven’t done this archetype test In a while)
Toni: When you talk about tools it has me thinking about labels. … I think about how hard fought these labels have been for me… and others. There was a guy I was talking to yesterday… he showed me a plastic wallet sized card which details his autism. He said his mom fought for him to have it because he kept getting into trouble with police- mainly for resisting arrest or his reaction to the systems they use to apprehend people. We know this is a problem but he said it’s changed his life to be able to show that card. Then I think about the ‘race card’ and what it would mean to have this physical … thing. How much labour/harm does it save…. Is that a tool you think could be used against invisible illness however?
Toni: Just a reminder the deadline for this is today
Demi: I WOULD LOVE A CARD. But it feels like it would have to be around my neck on show all the time.
Demi: Labels still empower me though
Demi: Because before I was just dumb, or slow, or being difficult
Demi: That’s what I was told when I was young so labels give me validation of my experience
Toni: I thought maybe I could put some of the things we spoke about yesterday in here – PALS. Being an ally for others with invisible illnesses and what that means- the reality of you coming and helping me clean myself and my house because I haven’t gone outside or answered the phone or being a conduit or buffer between you or me and the institution
Toni: We’ve gotten good I noticed at saying – I’m well enough to hold this for you
Toni: I cherish this a lot about our friendship and our professional lives
Toni: I recognise what a real privilege that is
Demi: Yes I think we have but i was sad yesterday thinking about you having absolutely no state support and how you just had me offering
Toni: To not have to relive the trauma again to retell the story to someone new
Toni: But you offered! You cared enough to listen and to be responsive to what you thought I might need and really there is nothing more you can do than that. I feel much better today because I was able to let it go much faster knowing someone was on my side
Toni: Mental health feels like … micro communities even though we all are experiencing it to some degree. In reality when you’re IN it… it’s very hit and miss who’s energy you can blend yours with.
Demi: Like yes it’s a privilege and Many like many don’t have any support I saw that a lot at MIND but it still not enough. Not enough. You deserve so much more, you’re entitled to so much more. It’s your human right to receive care and support for being ill. But we are denied that, unless you can pay. That human right has been monetised if that’s the right word.
Toni: Like a lanyard? Why do we need that to be a medical thing… could we create a set of those? Or a template? It would be really lovely to have this at Edinburgh fringe for instance… like solidarity .. we wear pink ribbons for breast cancer, poppies for remembrance, what is the universal sign of mental health solidarity? If there is one is THIS visible enough?
Toni: Yes! And socially or professionally you can overcompensate to alleviate that perceived gap in your ability. It feels like starting from a point of apology which is shit when it’s your project for instance!
Toni: On race – I have never felt more keenly than I have in the last few years the stigma around “hysteria” and women of colour. Particularly as I really attacked wellness and really made it part of my lifestyle changes… I am hitting barriers I’m stunned by.
I also don’t think we talk enough about resilience. I feel incredibly vulnerable – I think Bréne Brown said it- ‘vulnerability hangover’. For years. I feel bruised and embarrassed which stops me going back to any institutions I feel have seen me in a less than perfect state of readiness. A lot of this is my own imaginings but do I feel safe sharing these thoughts with individuals within organisations? I’m not sure I do. Because ultimately. Capitalism.
Demi: I’m just going to eat because I haven’t yet. I’ll be back x
Toni: Ok babs x
Toni: Would you like to share some? I’d like to see them … I was thinking about invisibility
Toni: I sent child photos because they remind me of you helping me to remember my inner child
Toni: (I also realise I have such a fear of being seen I don’t have enough photos with you. I’m going to do better ah that)
Toni: Also I was thinking about what allyship means – good memes, quotes and silly photos of us in nice places
Toni: I’m going to be quiet now and give you space to reflect/respond/ etc I have spoken a lot just because it was “there”
Toni: I hope it’s not too overwhelming xx
Toni: Oh man I didn’t even see your comment under at first and I was literally about to type back “personal attack 101” lol
This too kinda feeds into institutions and performing Invisible illness because it feels as if performance is sometimes the only way there is an acceptable level of illness. If it can be galvanised into something. Sometimes it can but sometimes that process is not visible or is days where we have to go to the cinema instead of working because sitting in a dark room not speaking but being stimulated and together helps.
I remember when my friend passed. Me and another friend who also knew her went out on a massive bender. We got drunk as fuck and danced in one of our fav clubs and pictures were taken of us by other people and posted on Facebook. When I returned to work the atmosphere was hostile and I didn’t understand it. My manager mentioned that they had seen me on Facebook and I just lost my shit. I remember standing in the office screaming “how dare you tell me how I can grieve” .. that company was shit anyway and since liquidated but I was hurt because the people I was friendly with also treated me with coldness because they read my getting wankered as me not really being sad. Who has a monopoly on sadness? I am still to this day cautious of sharing anything on social media when “I’m supposed to be ill” because one moment of joy seems to shift peoples perceptions back into – she’s well = well enough to work.
Toni: That’s a really good question – what do they NEED to know?
Invisible disabilities – it’s so loaded because it’s the constant need to PROVE it. It’s like evidence in court – how much do you need till I’m believed and I can breathe again?
With my ADHD it more comes from that- I have this overwhelming need to be believed and I will keep talking and giving examples and and and until I feel like that person believes me or usually there’s a moment in which I’m outward looking down at myself watching myself tout my traumas for “likes” or validation (even in a professional context) the need for someone to say it’s okay you don’t need to do anything. And I hate it. I really hate that. It hurts my soul. Not only because I am reliving the traumas I am talking about but because I’m back in that inner child space of either having to suppress and get on with it for fear of not being believed or the extreme of telling too much and fearing I’ve ruined it all anyway and that person/institution now thinks me unstable or ridiculous or dramatic or or or or …. I’m very intuitive and I can often sense when things are going west in a meeting for example and I just shrivel inside. I put on a brave face and go into a mode of acceptance and salvage. People pleasing to redeem whatever I’ve lost in the efforts to communicate my ‘insides’.
Toni: I feel at this moment and I’ve said this to you over the last few months- that I will never work again. It strikes me in this moment doing this that if I never did- nobody would really know why. So many quiet deaths … so many silences yet I feel so loud. My disabilities are so loud when I’m trying to heal or confront them. They’re right there! So how can they not spill over from time to time in professional contexts? Esp. In the context of us making work about it.
Are there organisations or institutions that have wellbeing training as well as first aid training? Are there dedicated people within institutions who are trained to work with neurodiversities and disabilities… from a care/wellbeing vs just medical perspective? How much responsibility does the institution have to ensure your wellbeing? Do sick notes mean anything here? Am I currently self certing? Am I “calling in sick”?
Toni: “She’s visible = well enough to work”
I wonder what it would like to be visibly ill with my invisible disabilities and that be absolutely okay. With no expectation or assessment of what my being there meant. Maybe I am creating that but it’s an experience I have had and maybe I’m not alone in that….
Toni: This goes back to your tweet I think about “privileged presentations of mental illness”…I don’t look like that. I’m a mess. It’s messy. It’s often not quote or meme worthy content. Soundbites of trauma. Idk why but I have that system of a down song in my head, the lyric is “my dick is much bigger then yourssss, my dick reaches to the floor” or as Louisa would put it- oppression Olympics. I feel out trauma’d so I often feel defeated before I’ve begun to explain. It’s all very exhausting
Demi: listen I feel this so much. I can’t articulate my shit like peeps can in a tweet thread. Like its smart, considered and clever. all I’ve got Is “its shit at the moment” and that’s ok but then you’re like it’s not ok. I’m an artist and can’t even make my illness a little sexy
Toni: That is EXACTLY it!
Toni: Sexy is SUCH an apt word. It’s not at all sexy but it somehow needs to be cute images of me looking flawless with no make up and artfully messy hair in Egyptian cotton sheets next to a potted yukka plant with a stack of self help books in disarray and a heartfelt outpouring. The comments section always soothes and alienates me and I feel guilty about that. It’s an amazing tool to give voices where there cant be one but my voice is so lost in it that I’m in a silence again.
Demi: I’m going to take the dog for haircut
Toni: Oh no. She’s going to scalp my little Yokie